Punkin Toes

Gone

2005-11-14T22:41:00.000-06:00

To the people who are so precious to all of us:

We have been very cautious in the past few weeks to abide by Shelly’s wishes regarding the situation at hand. We will continue to abide by those wishes, no matter how hard they seem to us right now.

This morning, shortly after nine, we watched Shelly be welcomed into the arms of God. Although our hearts are beyond repair right now, we know that Shelly is rejoicing in being with the people she loved more than life itself.

Thank you so much for the support, prayers, words of encouragement and friendship over the past several months. It is greatly appreciated and certainly carried us through our ‘wars’.

During the past four years, we have learned so much from each of you. We are glad you have shared in our journey, but our grief will be private. Thru Shelly and before that, Shar, you all have been welcomed into our deepest trenches. We couldn’t have made it without all of your thoughts and prayers. Now, we ask that you continue to pray for those that love Shelly so much as we try to figure out life without the four people who made it worth living for.

It is with great sadness that I tell you this will be the last posting. Shelly took great pride in leaving Shar’s page untouched by anyone else and we would like to honor Shelly in that same manner. Her words and feelings will remain here, untouched by our sorrow in losing her.

God bless you all.

Upholding

2005-10-06T16:39:00.000-05:00

Shelly has asked me to post whenever she's not available to. She's unavailable at the moment, and I apologize for not posting sooner. I never know what to say other than uphold the family in prayer. If Shelly could ask anything I am sure it would be to pray. I know you are. I know what it is like to feel helpless and not know what to do other than pray. Maybe just pray for strength (physically, mentally, and emotionally) and peace. I am not sure what else to say.

Zip

2005-09-28T01:53:00.000-05:00

It's late/early and I can't sleep. No one is awake and I'm afraid to wake anyone. If I do, someone will worry that something is wrong. While something IS wrong...right now, I just needed to know I'm not sitting here alone. I want my loved ones to sleep, however, so I shall sit here and type to the cyber world.

I am sobbing, silently, as Tessa sleeps in a recliner not far from me. I can hear my Dad snoring in the den, with the sound of Hannity in the background. He has once again used that show to bore himself into sleep. While I cannot hear her, I know that Sophie is directly above me, probably curled up next to Orange, awake in her own thoughts. I know that my Abu is sleeping within distance to hear me, but yet, I still feel alone, too worried to wake anyone else. They need sleep, too, right?

I don't know where I am going with this. Just that I'm scared. Scared of living and scare of dying. Scared of staying and scared of leaving. Scared of holding on and scared of letting go. It's not important, I guess.

Ria gave me a couple of ideas to post when I couldn't post,but still wanted to write. For the past hour, I have been working on this. I think I am going to continue this as time permits, I learned several things about myself while composing it. Look for more postings this week, if a guest blogger is needed, there will be one. Someday, I can explain to you all what is going on here. As I said earlier...for now, just trust that I am being well cared for.

1. What time do you get up? Moments after the nightmares wake me.
2. If you could eat lunch with one person, who would it be? Abu and George. Yup.
3. Gold or Silver? Silver.
4. What is your favorite TV show? Gilmore Girls. I’m a sap.
5. What was the last film you saw at the cinema? Um. I have no idea. The Wedding Date?
6. What did you have for breakfast? Ice Chips
7. Who would you hate to get stuck in a room with? My Aunt Bonn. There would be blood loss.
8. What/who inspires you? Creative flow inspires me. Who? My family.
9. What is your middle name? Not on your life will I publicly share this.
10. Beach , City or Country? I am my mother’s daughter...beach. Always the beach.
11. Favorite ice cream? Cherry Garcia. Is there any other?
12. Buttered, plain or salted popcorn? Plain with Ranch Dressing powder on top.
13. Favorite color? At the moment...clear.
14. What kind of car do you drive? In America, a Navigator. In Germany, a Volvo.
15. Favorite Sandwich ? Tomato on white bread with salt, pepper, and dash of low-fat mayo.
16. What characteristic do you despise? Lying, to others and to yourself.
17. Favorite flower? Calla lilies and French Tulips
18. If you could go anywhere in the world on vacation, where would you go? Canada
19 What color is your bathroom? Here, it is black and white. Sara did it, I can’t change it.
20. Favorite brand of clothing? Anything made for the giant in me.
21. Where would you retire to? Somewhere with water and peace.
22. Favorite day of the week? Any day that doesn’t end in Y.
23. Favorite sport to watch? Football. Have you seen the tight ends of the Titans????
24. Where were you born? Newcastle, WY
25. What did you do for your last birthday? I cried with Kay. Christmas really sucks lately.
26. What fabric detergent do you use? Tide, Clean Breeze
27. Coke or Pepsi? Diet Coke with Lime
28. Are you a morning person or a night owl? Both, I think. Sleep isn’t nice anymore.
29. What is your shoe size? It’s in the double digits. Way up there.
30. Do you have any pets? Zin thinks she owns me. Bella hates me. Orange bites me.

Meme

2005-09-27T09:06:00.000-05:00

A longer update at some point in the future. For now, just a note to thank you for your prayers, concern, and support. Someday, I will be able to bring myself to tell you what has happened in the past few days. For the moment, please know that I am being well cared for, we all are. I am in awe of the love that has been expressed for this family.

I wish this post could be longer, but it can’t be, point blank. Instead, I am taking Ria’s lead and posting this little get to know me entry. More to come later, I promise.

University: Duke (Go Blue Devils!)
Song: Let It Be, The Beatles
Album: Smell the Color Nine, Chris Rice
Movie: Sweet November
TV Show: Gilmore Girls
Actor: Vin Diesel (JD is so wrong!)
College: Wellesley
Cook Book: Any book that has a number to the local take-out.
Shampoo: Nexus
Store: Bed, Bath, & Beyond and/or Bath and Body Works
Starbucks Drink: Carmel Apple Cider
High School: Any school that I don’t have to teach in.
Bookstore: Barnes & Noble
Clothing store: AE
Smell: Romance, by Ralph Lauren or Angel Heavenly, by Victoria’s Secret
Sport: Soccer and tennis
Food: Sugar-free French Vanilla pudding
Form of art: Contemporary Abstract
Decade: The 00's haven’t been great...but I wouldn’t go back to any other decade.
Time to go to sleep: When I’m not alone.
City: Where my heart is...
Magazine: Cosmo or Redbook
Boy: Boy? Think Man.
Band: Casting Crowns
Doughnut: Krispy Kreme New York Cheesecake
Record Store: Sam Goody
Beatles Album: Yellow Submarine
Method of Birth Control: Abstinence?
Kind of Computer: At the moment...Dell. Yesterday? Sony. Next Week? Toshiba
Little brother: Nada
Room: Sara’s room upstairs.
Writing utensil: PaperMate™ Liquid Expresso Extra Fine
Bag: Coach Pocket Satchel (The best money ever spent!)

Support

2005-09-22T21:18:00.000-05:00

I am struggling with what words to say as I sit here and beg for prayer for my second mother. I don't think words are enough right now. I am sure you have read the comments on the previous post that Jane left. We need to be in prayer for Shelly. I am not at liberty to say much more than just to pray. The family needs our support, and if the only thing you can do it pray, please do.

Verizon

2005-09-18T22:24:00.000-05:00

Thank you all for you patience and well wishes during this past week. While I have not been able to respond to the many e-mail messages sent, nor have I have been able to return any of your phone calls, I have been made aware how many of you are watching over me during this time. I can’t promise when I will be able to respond to each of you, just know I’m trying and I will at some point get back to all of you.

Life isn’t going so well here. My Dad and Sophie are hanging on with help from the mass of people that love us so much. We have daily visitors here that are helping to keep the house together and to keep those two fed in my absence. As for me . . . well, I can’t share what is going on with me, but I can ask you to please continue to pray for strength, not only for myself but for my Dad and Aunt Sophie as well. God is breaking us, our spirits are broken already, our hearts are shattered, but right now, we don’t have anything left to hang on for or to.

I wish I had more to say or the energy available to say it. I have spent the last few hours searching thru Mom’s computer looking for something. Instead of what I wanted, I found dozens of photos that brought me to my knees and many more things that flooded my eyes with tears. I miss my Mom so much. Right now, I need her more than anything. I need my sister. I need my Aunt Kay. I need to know I’m not alone on my path. I keep trying to remind myself of my Mom’s words that we are so blessed . . . but I can’t. Blessings do not seem so clear right now.

Again, just as last week, I cannot promise when the next one will come either. I will update as I can and again, if need be, a guest blogger is in place. As stated above, I am not doing many of the return phone calls, but they have been handling everything. Just as it was last week, if you need something, please feel free to call my Dad or Aunt Sophie’s cell phone(s).

As some of you may have noticed, there is a secondary post under this one. That is because I wanted to share two separate songs with you this evening. The first (listed in this post) is a song that describes exactly where I am tonight. The second (listed below) explains how much I just want this to be over. To listen to both, just press the forward arrow button.

Please listen. I need you to hear me.

Powered by Castpost

True

2005-09-18T21:08:00.000-05:00

as my memory rests
but never forgets what I lost
wake me up when September ends

summer has come and passed
the innocent can never last
wake me up when September ends

ring out the bells again
like we did when spring began
wake me up when September ends

(press the play button to hear it)

Petrified

2005-09-11T21:57:00.000-05:00

Never in my life have I felt more loved nor more alone than I do at this time. The past five days of my life haven’t been the toughest that I have dealt with, but they come very close in ranking at the top in the list of toughest times of my life. Thank you for all of your prayers, visits, calls, e-mails, and mail sent during the past few days.

Due to being so loved, we ~~have~~ had a houseful of company. Tessa, Denver, and Dustin made a flying trip here from Boston and will be returning home tomorrow evening. Jane, Ellie, and Rush made the four hour drive to be with us and left for home this evening. Our neighbors have once again showered us with thoughtfulness and love by doing simple chores for us, stocking the freezer with easy to prepare meals, and taking care of the animals during our absence. As my Mom would say, we are so blessed.

Our lives are upside down right now. I can’t share with you the trials we are currently facing, no one could understand. I miss my child, my husband, my life. However, my child is safe right now. My husband is doing what he loves, and my life? Well, my life as I once knew it is over and will never be the same again. I am hurting physically and as Jane stated in a comment left last week, I am hurting emotionally as well. I am trying to hold on to everything I can, but truthfully, the only thing that brings me joy is hearing from my Abu, knowing that someone is fighting as hard as I am, for me, simply because they care about what happens to me.

Tonight, my family and extended family attended a memorial service held at FPBC to honor all 9/11 victims. I had planned on going, had my tribute written, put on the waterproof mascara, but at the last minute, became unable to attend. Everyone else went instead at my insistence. I took the time to draw a bath, turn all the lights off, and cry while sitting in a tub of bubbles. I sat there until they came home, found me sitting in a tub of cold water with no bubbles remaining. As Sophie helped me to blow-dry my hair, she just let me cry and didn’t try to tell me everything is going to work out, that this will not destroy us any further. She knows enough by now to know that nothing is ever going to be all right, never again.

The posts will be erratic this week due to things that are beyond my control. There may even be a guest blogger if life demands it. I can’t control when the next post will be, just know I am aware of how much I am loved and thank you for the prayers.

Four

2005-09-11T21:12:00.000-05:00

Four years and it seems like a lifetime.

Four years since Alex woke me from a sound sleep shouting the words "Our Country, Our Country."

Four years since I received an emergency phone call from Peter who told me he was about to call my parents, Karen was on that flight.

Four years since the last time I felt safe in my homeland.

Four years and it seems like yesterday.

Inexpressive

2005-09-07T00:01:00.000-05:00

I promised a post tonight and it's not happening, I'm sorry.

It isn't a matter of not wanting to post, but rather a matter of not having the right things to say. I could try to come up with the words, but nothing could even come close to what I am feeling right now. While the post from yesterday was not intended to scare anyone, I am now aware it did. Please know that I am safe and be taken care of by the people that love me. While I am falling apart inside, I know that there are people standing here ready to pick up the shattered remains. I am safe from myself tonight, please don't worry.

I will be unavailable for posting, returning calls, or responding to e-mail until late this weekend. If you need anyone, someone will be available on Dad or Sophie's cell phone(s). I can't promise when the next post will be, just know it is coming. If something should happen that extends my absence, I am sure there will be a short update from Ria if need be (thanks in advance, Ria).

Alerts

2005-09-05T23:05:00.000-05:00

We interrupt the regularly scheduled broadcast to bring you this late breaking news.

Shelly has cried herself into a state of emotional exhaustion and can’t find the strength to type a rational post. A normal post is expected by tomorrow.

We now return you to your regularly scheduled broadcast.

Dissimulate

2005-09-04T14:32:00.000-05:00

It’s been so long since I took the time to write a post, but one has been brewing in my head for days, if not weeks. I have so many topics to speak about and don’t have any idea of where to start or where to end. First topic? Betrayal . . . a funny word. Webster’s defines betray as the following:

Betray >verb 1 act treacherously towards (a person, country, etc.) by revealing information to or otherwise aiding an enemy. 2 be disloyal to. 3 unintentionally reveal; be evidence of.

I can define it in a much more simple manner. My Dad has had a long standing quote that sticks out to me at this very moment . . . "One lie will cause doubt to 1000 truths." In this case, it’s so fitting. Life will never be the same again and at my lowest, I was kicked in the gut by someone who loved me. I know now that I had mistaken love for misguided intentions of personal gain. There has been betrayal in the highest form and I am too weak to do anything about it. I don’t know who to reach out to, I don’t know what to ask for. What I do know is that we need help. I need someone to hold me and promise to never let go, even when I want to just drift off. We need help, not more hurt.

Life is full of curve balls and another has just been thrown at us, achieving a bull’s-eye hit upon impact. The last two weeks have been full of days that have been hard . . . Mom’s 61st birthday and the one month anniversary of Kay’s passing among the biggest . . . soon will be the anniversary of Karen’s passing and shortly after that, my Dad’s birthday.

I know most of you are wanting to know what was the cause of my sudden and unexplained absence. If only it was that simple . . . please know that I was safe and well-taken care of. So many of you called to check on my safety and became concerned upon not being able to reach anyone in the family. Please know that the remaining three of us are as safe as life will allow and we were together.

I would like to take a moment and thank all of you who left comments, instant messaged, or called in regards to my absence. My thanks to Ria who did a fine job of keeping the updates current as life and circumstances allowed.

I have so much left to say and not one more drop of energy to type it in. I promise, another update tomorrow.

Reconnaissant

2005-08-29T23:30:00.000-05:00

Hi, another post from Ria, filling in for Shelly for the moment. Please continue praying for Shelly, Ben and Sophie. Your prayers and concerns are greatly appreciated. At the moment, Shelly wanted me to let you know that she will be posting as soon as time allows. There have been a few obstacles including storms that cut of the internet connection, that keep her from posting. As soon as things get sorted out she will be back. She realized that many of you would be concerned of her whereabouts, that is why she left me in charge of letting you know that she will be back.
Thank you from the bottom of my own heart (and I am sure I speak for the rest of the family as well) for your prayers and best wishes.

Proxy

2005-08-27T00:34:00.000-05:00

This is just a short note to let you all know that Shelly will be posting as soon as she can. She asked me to leave a post letting you know that things are alright. Please keep her and the rest of the family in your thoughts and prayers. Another post is coming soon.

Borrowed

2005-08-21T21:38:00.000-05:00

And the hits continue . . . day #? in what closely resembles hell.

Today’s subject other than the ever flowing tears? Today we are going to learn about trust and faith. Stay with me. I’m onto something. This week I have been given a huge lesson in both. A large many of you are aware that my reserve is nearly empty of both trust and faith.

I have learned this week that is okay to trust in the unknown, the untouched, and the unseen. It is okay to not know where to turn or what to do, but it is okay to trust in something you feel, but cannot see. Realizing of course that not all unseen things are real, I have learned to take the giant leap and open what remains of my heart and trust the untouched.

Faith? Faith is hard to come especially right now. However, I have been blessed enough to have someone love me enough to hold onto me when my faith is gone. They have faith for me, have instructed me on blind faith. (I thought long and hard about that phrase . . . blind faith. Isn’t all faith blind? No. I have learned this the hard way.) I am holding onto faith right now, blindly, but still holding on.

For more than 24 hours, I have been camping out on the sofa in the den, unable to sit up straight because my headache is ever present and a powerful one, to say the least. I’ve had a lot of time to think about this. I’ve also had some time to just be quiet and still and to listen to my heart. Throw in a few times that I craved noise and attempted to listen to music before the throbbing started . . . well, you can see I’ve had time.

I heard a song today regarding borrowing faith. That is what I have done to those who surround me right now. I have borrowed faith from them. I don’t have enough of my own right now. I have learned to accept help this week, or at least try to accept it. I am at the lowest point I have ever been in my life. Losing my sister was hard. Losing my Mom was hell. Losing Kay was horrendous. With that said, this is still the lowest point I have ever been in my life and I’m scared. I am reaching out and grabbing onto borrowed faith, so thank you for offering. I don’t have any other choice than to accept because at this point the only place I know to turn is death, my own. With that said, I accept.

I’m only hanging onto one thread of borrowed faith.

Please don’t let me go.

Vendetta

2005-08-20T01:28:00.000-05:00

Sanity didn't remain intact. Life is crumbling. Drugged myself enough to be numb, just not enough to forget. More posting later tomorrow.

Minuscule

2005-08-18T22:27:00.000-05:00

Sophie and I made it back home this evening. I am so tired I can’t think, much less post anything responsible and rational. I received a number of e-mails during the course of today asking if I am safe. Safe? Yeah, I guess so. Safe from myself? I guess so. Safe from the world?

No.

A better update tomorrow evening if my sanity remains intact.

Respite

2005-08-17T21:48:00.000-05:00

If I could show you how broken my heart is at this very moment, you would run in fear. If I could show you the thoughts that have run across my mind recently, you would have me committed to the local psychiatric ward. I can’t show you these things, nor can I share them with you. Instead, let me tell you how we are doing here.

Sophie is struggling, but hanging onto everything she can. The day after we lost Kay, we had another bomb for our family to deal with and we are still reeling from it, Sophie most of all. If I were to tell you that it is harder to deal with than Kay’s death, it would be the truth. We have lost someone dear to our family, but not by death, rather by personal choice. We are left with a thousand and one questions that most likely will never be answered. Kay’s death was expected, losing this person was not.

My Dad is doing his very best to console everyone and handle everything. He is taking some time each evening to be with Andy and just enjoy what he can right now. Like Sophie and I, he is also struggling with the actions taken against this family in the past few weeks. He doesn’t understand anything more than we do and it is hard to realize that due to the hatefulness we have been shown, we may never have those answers.

They say what goes around comes around. I’m sure you are thinking that I might hope this person has the same heartbreak we have had. I don’t. I don’t want anyone, including my worst enemy to deal with this pain.

We are so very thankful for all of you. Your e-mails, phone calls, cards, letters, late night instant messaging, we love each of you for helping us thru this. We know that we are surrounded by love and yet, still feel horribly alone. Hearing that you are out there, for us, anytime . . . it does help. In a recent conversation, someone told me how inadequate she felt because she didn’t know how to help us. She told me this as she cried along with me. It helped, somehow. To know that we aren’t alone, helps.

Tomorrow I am taking Sophie to Tulsa for her monthly treatment and checkup. Another posting will follow tomorrow evening and again on Friday. I don’t know what the rest of this week will hold, for any of us. I do know that not one of us can hold on any longer, for any other blows.

Homesick

2005-08-14T12:30:00.000-05:00

You're in a better place,
I've heard a thousand times
And at least a thousand times
I've rejoiced for you
But the reason why I'm broken,
the reason why I cry
Is how long must I wait to be with you

I close my eyes and I see your face
If home is where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
I've never been more homesick than now

Help me Lord cause I don't understand your ways
The reason why I wonder if I'll ever know
But, even if you showed me, the hurt would be the same
Cause I'm still here so far away from home

I close my eyes and I see your face
If home is where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
I've never been more homesick than now

In Christ, there are no goodbyes
And in Christ, there is no end
So I'll hold onto Jesus with all that I have
To see you again
To see you again

And I close my eyes and I see your face
If home is where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
Won't you give me strength to make it through somehow
Won't you give me strength to make it through somehow

I've never been more homesick than now.

Courage

2005-08-13T21:27:00.000-05:00

After a very long, painful, and emotional week, we have returned to Missouri. I would love to be able to tell you that we are coping, but the truth is, we aren’t. We are simply trying to exist right now, and coping is too much to ask of us. We drove straight thru and arrived home yesterday evening. To say that we are tired would be a laugh. We are exhausted and have taken today to just be. Simply just be here.

Kay’s burial . . . I can’t find the words needed right now. Let’s just say I don’t want to ever do this ever again. Being back at the family home in Boston was very hard, it felt like my Mom was everywhere, no matter where I looked I could see her, feel her, hear her. This was not as comforting as it sounds and haunts my heart as I think about it now.

I have so much to say, and I’m too tired to say any of them right now. However, I’ve had so many e-mails wanting to know how we are doing, I thought it would be best if I just updated so everyone knows where we are. I will be updating several times in the next three days, I have so much to say and I’m sure it will be jumbled, but needs to be said.

I don’t have any song lyrics tonight, nor any photos to express what is going on here, but I would like to leave you with something that was said to me this week and I am trying to cling to it as I fight to find a reason to wake up again.

"Often the real test of courage is not to die, but to live."
- Conte Vittorio Alfieri

Solar

2005-08-07T13:05:00.000-05:00

In a few hours, the majority of my family will load into three vehicles and set out on a 1500 mile journey that will be complete only after Sophie and I join them on Monday evening. Kay will be flown separately tomorrow afternoon. Sophie and I will have (hopefully) arrived in time to meet her incoming flight and will join the rest of the family at my parent’s home in East Boston. To those of you who were unable to make it to the funeral, but instead have voiced the urge to join us at the burial on Tuesday, we welcome you with open arms.

We have made it thru a very emotional four-hour visitation service, several thousand hugs, and countless tears. We made it thru a very touching service yesterday morning, an eventful reception, and a night of catching up with distant friends who have flown from all across the land to express their sympathies. Our hardest times still lay ahead however, beginning with the burial of my Aunt Kay and ending with our journey as we figure out how to go on, yet again. (Side note: If one more person tells me that Kay is in a better place, I’m going to start throwing punches. Yes, she is in a better place, but our place just got a hell of a lot worse. I have nothing else to say on that line of thinking. I may sound rational at the moment, but I’m falling apart and I’m angry, so please don’t tell me how she is in a better place, just save us both pain, okay?)

This week has been one of the hardest times of my life. I have been knocked breathless, kicked in the stomach, and have fallen to my knees at the events that have occurred this week. Certain actions have taken place this week that should have never been voiced, much less acted on. Out of the respect for my Aunt Sophie and for the sake of my Dad’s sanity, I have respected their wishes that I not take the matter into my own hands. However, alongside of Kay’s death, I have just now, this late in my life, learned that you can lose someone who hasn’t died and it is very close to the same heartbreak of losing someone to death. I have lost respect for people this week and been sadly let down by actions taken against my family. My Mom and Dad raised me to stand before what I truly loved and not allow further harm to come to anyone involved. This week, harm has come and I will not stand for it. I don’t know exactly how to handle it and right now, am not in the rational state of mind to take care of it, but I promise you, no one will hurt my family like this ever again. I just won’t let it happen. None of us are strong enough to go thru any of this again.

I’ve tried to write this in my head several times throughout the course of yesterday evening and this morning and I wanted to write it just as sounds in my head, but I don’t know if I can. It is clear to me now, just how very much our Kay was and always will be loved. Her funeral was simply breathtaking. Every word that was spoken was from the heart from those that love her very much. Each song that was played or vocalized was a pure tribute to Kay and impact she had (and always will have) on our lives. At some point, I will be posting the songs that were played and the words that were spoken, but for now, I would like to just share the words to one that speaks volumes and was exactly how Kay felt as she faced her final days with us.

Ready to Fly-FFH
I've been here grounded far too long
I'm ready to see the open wide
Ready to sing a different song
I've seen my troubles 'long the way
I want to sail towards the sun
I want to turn another page
I'm on my way

I'm ready to fly,
I'm ready to soar
I'm ready to leave this world behind.
I'm ready to open up the door
I'm ready to fly,
I'm ready to spread my wings across the sky
I think it's time
I'm ready to go
I'm ready to fly.

You've told me I could rise above
Like an eagle on the wind
I can glide upon Your love
But I feel the pull of gravity
And it's a weight upon my shoulders
I can't stay here any longer
I've gotta be free

And it's been so long
Since I’ve seen the bright morning sun
Through the early morning horizon
And it's been so long
Since I’ve felt the air under my wings
And seen all of these things from above

I'm ready to fly,
I'm ready to soar
I'm ready to leave this world behind.
I'm ready to open up the door I'm ready to fly,
I'm ready to spread my wings across the sky
I think it's time
I'm ready to go
I'm ready to fly.

Needs

2005-08-05T14:54:00.000-05:00

The days seem to last forever and blend together, all at once. This week has been one of the longest weeks of my life and yet, it seems everything is happening much too quickly. This afternoon we will be greeting guests who have flown halfway across the world to be with us at this time, to say goodbye to their beloved Kay, just as we are trying to do.

Yesterday, we were able to see Kay for the first time since they took her from us on Monday evening. I am sure everyone expects me to say how horrible it was to see her in the casket, but it truly wasn’t horrible. It was heartbreaking to know that she is really gone, but she looked so beautiful, so peaceful. For months, I have seen her in pain, this was one of the very few times I can honestly say she looked free from pain. Before she passed away, she made a request that a quilt be purchased and draped over her casket. At the close of the service, she requested a piece be cut from the quilt, placed with her, and the remainder of the quilt be with Sophie. Last night, we were able to drape the quilt over, just as Kay asked us to do.

The next few days will be very hard to cope with, for all of us, but especially for my Aunt Sophie. Not only has she lost her wife, but she is grieving another type of loss, a loss so complicated and heartbreaking that I can’t even write about it here. To say that she has had too much heartbreak this week would be an understatement. Please keep her in your prayers. Things are rough right now.

This evening we will be at Kay’s visitation. We made an impromptu decision to have some very special music playing tonight. Kay, just as my Mom did, enjoyed music greatly and it became a necessity during her final weeks. We had several cd’s playing thru the final week of her life, many of which my Mom also listened to. Tonight, during the calling hours, that same music will be playing. While this may not make sense to some of you, this is our way of bringing a part of Kay to all those who love her as much as we do.

I will write more later tonight, I have too much to say to hold it all in, but for now, I need to embrace the person who needs me. She needs to feel that she isn’t alone, just as I do. She needs me. I won’t let her down.

Sunsets

2005-08-03T21:05:00.000-05:00

I have been sitting here trying to figure out what to title this post. I decided on Sunsets because it sounded much better than my other ideas: Should’ve’s, Could’ve’s, Change, or my personal favorite, Things I want to yell violently, but will refrain from doing so for the sake of what is left of my sanity. Sunset is a perfect way to describe what is happening in our lives today. The sun has set on yet another of our loved ones and we are trying very hard to figure out how to face the next day without her. This is much harder than I thought it would be. No matter how ready any of us thought we were, we weren’t.

I could tell you how hard it was to watch them take Kay away Monday night. I could tell you how my Dad had to physically hold Sophie back or she would have held onto Kay forever. I could tell you how hard it was to sleep without her here. I could tell you how I rushed around frantically last night washing blankets and towels so that Sophie didn’t have to see any traces of Kay’s blood. I could tell you how much it broke my heart to be at the funeral home both yesterday and today. I could tell you about writing Kay’s obituary today. I could tell you about how this evening I will be taking time to pick out music to play at her services. I could, but I can’t.

I should tell you about the beautiful and very touching candlelight prayer service we attended this evening at F.P.B.C and how grateful we are for the congregation that held us in their arms tonight. I should tell you about the generous outpouring of love we have been witnesses to in the past few days. I should tell you about the immense feeling of gratitude that I have for the friends that have surrounded us throughout this journey. I should tell you about how I know for certain that Kay arrived safely to Heaven. I should tell you about how many people have come to us and shared their love for Kay with us. I should tell about how I seriously doubt that Kay knew she was this loved before she passed. I should, but I can’t.

Change happens. Hope changes, my Mom said. Time heals all wounds, they say. Life moves on. Change happens. Change is good, they say. It inspires us to try new things, find new pathways in life. Change happens. Change is a constant, you cannot stop it. No matter how much you rebel against it, you cannot prevent it. Change happens. I should be able to stop change, but I can't.

Things I want to yell violently, but will refrain from doing so for the sake of what is left of my sanity: I want to yell at you. Yes, you. Which you? Anyone who will listen, I suppose. I want to yell about how it felt to watch my Aunt Sophie come sobbing to me while waving an e-mail in my face. I want to yell what it felt like as I watched her physically collapse as the tears consumed her while I read the letter she was holding this morning. I want to yell what it felt like to know that my Aunt Sophie has been hit with a horrific blow and they just keep coming. I want to yell at you for leaving us when you were needed most, for not holding on for just a few more days. I want to yell at you for being so cowardly to not even say goodbye in person. I want to yell at you for taking away my hope, because now it is officially gone. I have no more hope. I want to yell at you, to tell you that I honestly don’t feel like going on anymore, that I don’t have the strength to keep doing this, that I don’t really want to be part of a life that is this hard to hold onto. I want to yell at you, but I can’t.

I can’t because I don’t have the strength to do. I can’t because I have cried until I honestly believed I could cry no more and yet, the tears keep falling. I can’t because I’m so angry, I’m not sure I could control my words. I can’t because I am so overwhelmed by simple grief that I can’t function. I can’t because . . . I can’t.

Eternity

2005-08-02T01:20:00.000-05:00

I have sat here for the past two hours trying to figure out how to word this and everything I type comes out all wrong. I’ve typed the same sentence forty times over and it still isn’t right. I don’t how else to say this, so I will just say it.

This evening, the Angels were joined by my Aunt Kay. It was as peaceful as she wanted. Everything was just as she wanted.

"Dear Family & Friends,

There is no easy way, or words that could possibly tell express the sadness and abundance of tears as we regretfully tell you that Kay passed away this evening at 5:20pm. She took her last breath surrounded by her family, fulfilling another wish of hers, that she not be alone. Her passing was peaceful. She felt no pain.

Kay’s part in this journey has ended, she is at peace. For that, we are grateful. We thank you for all the thoughts and prayers. If it is not too much to ask, we would like to request that you please continue them for her family/friends, for strength, guidance, and whatever else you think will help us. We know too well, the difficult path that we are now facing, having been less than 9 months since we lost Shar.

Kay was 4 weeks overdue when she came into this world. Her mom told us of stories about how she would talk to Kay, encouraging her to come out into the world. She came into this world in her own way, she lived her life with that same unyielding manner, and she died in the manner she wanted. To say that she will be missed does not come close to what we are and will be feeling.

Kay died 18 years from the day that she and I (Sophie) met. As a close family member said "She wanted to write the perfect ending to her book of life, this was her way of closing out the last chapter on a high".

We apologize if you are hearing this for the first time, if this is the case, we were unable to contact you via phone. All efforts have been made to do so.

We will notify you as soon as arrangements have been made for her services. Again, many, many thanks to all of you.

With Love and Sorrow,
Sophie, Ben, Shelly"

I didn’t think life could break me any more than I am already broken. Yet again, I was wrong in my thinking. I will post more tomorrow.

Weak

2005-07-29T22:36:00.000-05:00

I’m writing tonight the third hardest entry I've ever had to write and I can't stop thinking about my Mom's words . . . We are so blessed. Blessed to be loved, Blessed to be prayed over, Blessed to be surrounded by so many who care, and Blessed to have each other. Right now, being blessed is being outweighed by the fact that we are losing someone we all love very much. It feels as if we are cursed, not blessed. I know this is not the truth. It just feels this way.

Our dear friends arrived this evening from Boston. Tessa and Denver have been in our lives for several years and have stood by our family in the good times and in the bad. It was good to see them and we are grateful for their presence here in the next few days. Life is getting harder to deal with. Having someone else here helps, for the moment. Kay’s care is constant and around the clock, even with the changes you are about to read about. It takes a village . . .

I have so much to share and no more energy available to put forth into writing, so I am sharing an e-mail sent out today by my Aunt Sophie and a close family member.

"Our Dear Friends/Family,

Again, we would first like to thank you for all the support and concern shown for Kay, and our family through this very difficult time. We are so blessed with having all of you in our lives, and the outpouring of concern and love by way of emails, letters, phone calls, visits, food, (and others, so many to mention) has been overwhelming. Thank you, from the dark places where we have been, your support has given us constant light, something to keep encouraging us… much like a lighthouse in the middle of a horrendous storm, you have all guided us to where we are. THANK YOU.

Since we last emailed you, many things have transpired that we wanted you all to know about, and to keep you informed of. Every one of you is deserving of a phone call with this information. We hope and pray you understand that there isn’t time for this right now, nor do we have the strength to do this. So please, thank you for understanding all of what we are saying.

As of yesterday, Kay has been sedated to a state where she feels no pain. This was one of Kay’s requests. Because she was unable to communicate with us for a day, it was left to us to decide when that time would be. This has been difficult as you can imagine, she entrusted that we would do this, and we had no way of knowing if she would be able to communicate with us again. We certainly did not want to give up on the hope of that, but also, we did not, nor do we want her to be in pain. As a family, and we include Kay’s nurses in that description, we shared many thoughts and tears together. Caroline suggested that before sedation commenced, that perhaps we could lessen Kay’s pain meds to give her one more chance to respond. God granted us a gift, a tremendous gift. Kay was able to respond to questions by squeezing her hand, thus confirming that it was time. While this made the decision of "when" easier, it also has forced us to start grieving and start the letting go process. We are all doing the best we can. It is most difficult, and reminiscent of too many painful memories in our family.

Kay is getting the best care possible, as per her request, she is never alone. We are all very doing our best to make sure her wishes are being fulfilled. This involves much time and all of our energy. Sleep is a luxury that our bodies crave, but our hearts, minds and promises are making it difficult to get. As a result, we sleep in shifts, and are doing the best we can. We hope you understand that at this point, where we would like to ask you all, to please understand that unannounced visitations are too much for us now. We are SO very grateful for all of you, we do not want you to think we are anything but, please understand this request is helping Kay, and helping us to fulfill Kay’s wishes.

Her doctor believes that Kay will be receiving her wings this weekend. We believe this to be true as well. Only God knows. We would like to ask that you please continue all the prayers that have helped us get to this point. They are very much appreciated.

Now we would like to keep you up to date of another difficult subject. We will do our best to notify you all personally when Kay passes, if that cannot happen, we will email you again. As soon as the arrangements for her services are made, we will let you know, however we can. As per Kay’s request, we will be allowing as much time as we can prior to her service, for those of you traveling.

Thank you so much for being in our lives, for supporting us, for your prayers, and all the kind and wonderful random acts of kindness shown to us. We hope that you, like us, find relief in knowing that she is in no pain, and is in very peaceful sleep now. We are very grateful for that.

With much love and gratitude,
Sophie, Ben, & Shelly"

The tears are clouding my view of the screen, so I am going to share our appreciation with you all and say thank you for everything you have done and continue to do. I am leaving you with a quote that is guiding our lives right now. We are trying to realize this is the truth and we are trying to apply it to Kay’s final hours with us.

"Some people think it's holding on that makes one strong; sometimes it's letting go."
-Sylvia Robinson

Nothing

2005-07-25T23:17:00.000-05:00

I’m posting this because I feel you all need to know where things are at tonight. As I said in the previous posting, Kay has declined any further transfusions. However, last night she began to cough up blood and agreed to going in for transfusion reasons only. We were at the hospital with Kay in the early morning hours due to her inability to form blood clots. She needed two platelet transfusions and one blood transfusion in order to get things under control and her blood levels stable enough to come home (which is where she insisted on being).

We did have the chance to speak with her oncologist at great length. Our greatest fears were confirmed. I am enclosing a copy of the e-mail that another family member composed for Aunt Sophie so that you will know exactly what I am trying so hard to say and just can’t.

July 25, 2005
Our Dear Friends/Family,

First, thank you all for the emails, letters, and phone calls concerning Kay. All are very much appreciated, and it is helpful to know that we have so many wonderful friends/family in our lives who love us, who love Kay.

This is a very difficult time, and a very difficult email to write, so please forgive me if this is brief and to the point. You are all so deserving of individual responses unfortunately I/we have not the time, to do that right now. I apologize for the impersonal manner in which you are finding out this news, I wish I had time to tell each of you in person, and then again, I wish I had better news to tell you. Sadly, this is not the case.

We were told this morning by Kay’s oncologist that Kay’s time with us is very short. We have mere days, most probably she will receive her wings and be flying home with the angels by the end of this week. I, we, would like to ask that you please pray for her. Please, as hard as this is to say, I’m sure this is as hard to hear. We are asking that you please pray that this happens quickly for her. While I/we are not, nor are any of us ready to say goodbye to her, it is only out of Love and wanting to spare her from suffering that I/we ask this of you. Prayers for strength for all of us who are caring for her, would be very much appreciated as well.

I/we regret that I/we were unable to contact many of you sooner. It was Kay’s wish that it be this way. I/we are sorry if this hurts you, please know, I am letting you know now because you are so important to us, and for whatever Kay’s reasoning, we are doing our best to honor her wishes.

As far as visits go, there is so much going on, her care is consuming, please trust that we are doing all we can to make this as painless as possible for her, and her wishes are being followed.

I/we will be in touch when we can. Again, I’m so sorry that you are finding out like this, and your prayers mean so much to us.

With Love,
Sophie, Ben, & Shelly

I don’t have many other words to add, and the e-mail says it all. I was given the gift of two songs today, two songs that sum up life pretty well right now. A portion of each appears below:

This Is a Call
Thousand Foot Krutch
"She fooled all of her friends into thinking she's so strong
But she still sleeps with the light on
And she acts like it's all right on, as she smiles again
And her mother lies there sick with cancer
And her friends don't understand her
She's a question without answers
Who feels like falling apart.
She knows, she's so much more than worthless
She needs to find a purpose,
She wonders what she did to deserve this."

Sometimes He Calms the Storm
Scott Krippayne
"Sometimes He calms the storm
With a whispered peace be still
He can settle any sea
But it doesn't mean He will
Sometimes He holds us close
And lets the wind and waves go wild
Sometimes He calms the storm
And other times He calms His child."

For those of you that have offered to help me with the photo project, thank you. It’s been placed on the back burner for now, but is something that I need to do. (Also, I understand I posted the wrong address for Flickr, but HERE is the corrected link.)

That’s all I have. I have nothing left to offer. I can’t make the tears stop in order to type any other words.

Rocks

2005-07-23T00:01:00.000-05:00

An overdue post, but this is the best I can do given the circumstances right now. Since the last update, several things have happened. I have tried to catch up on e-mail in the last 24 hours. If you are still waiting for a response from something you sent, I promise I am trying to respond to each of you as much as time allows. (Tessa, don’t give up hope yet, I’m working on it.) I have also been trying to set up a Flicker or Zoto account (does anyone know about this?) in order to share some wonderful photos that I shot during events this week.

Sophie did come home on Monday has anticipated. She is tired, but the treatment seems to be working. She tells us each day of the changes she can see and we are noticing them more and more as well. We are grateful that this has worked and pray it continues.

Kay has had one very good day this week and the rest have been just as bad as Sunday was. Let’s start with her good day. That was Wednesday, the day of her rededication. She was bright eyed the morning of the service and she looked amazingly beautiful. The service could not have been more peaceful nor more personal, for which we are all grateful. Our utmost appreciation to all of the Pastoral staff and members of F.P.B.C. for a truly inspiring memory that none of us will be able to forget. (Photos coming once I figure out the previous mentioned Zoto and Flicker issues.)

After the service, Kay had already planned on going to speak with the funeral director, the same director who handled Sara’s service here and who handled all the arrangements of getting Mom to Boston after her death. He remembered us all too well and seemed very saddened to see us there. We felt the same about seeing him. She and Aunt Sophie handled the majority of arrangements, but it was extremely difficult to be there and to realize what we were doing. Kay was courageous enough to venture into the casket room and choose her own casket. This is something that I could never do for myself and have no interest in ever doing for anyone else as long as I live.

She has made her wishes very clear and as God as my witness, they will be followed. Sophie has dedicated her life to taking care of Kay and I truly believe she will harm the first person who tries to go against anything Kay has asked of us. We will be following her wishes exactly, no matter how hard they seem to us.

The rest of her days have been truly horrible. Between the frequent seizures, the increase in pain, and the near constant tears, Kay has said several times that she is ready for this to be over. As much as we don’t want to lose her, we are ready for her to be at peace. She has been sleeping for the greater portion of the last 24 hours. Again, it is much needed rest as the previous two nights were sleepless. This week has been the first week that she has actually asked for an increase in her pain medications. We are hoping and praying that the increase in medication is the cause of the extended sleep. Our minds tend to wander back to the afternoon of November 7th, 2004 and we begin to fear that life is repeating, yet again.

Much like my Mother did in her final weeks, Kay has reached a point that she has declined further clinical help in the form of transfusions. We have accepted this and respect her wishes. She has started to have moments of incoherent rambling. She clutches and grabs for things we can’t see and becomes filled with hysteria when we try to calm her. We have learned it is best to just observe at these times. I don’t think any of us have any hesitation about believing her when she tells us things such as "Shar was here" or "Shar told me."

A perfect example of this took place on Monday evening. We had torrential downpours and loud rolling thunder that continued for hours. During a brief pause in the downpour, we realized that there were five rainbows surrounding the house and took Kay outside to view them. She sat on the deck swing and quietly told us how she knew there would be rainbows because my Mom came to her and spoke of them. It is my ever hopeful prayer that Kay is given the same gift of "visitors" that my Mom had. I pray Kay is given the same angels to help her home with my Mom, the best one, holding her hand as she is called back to God.

I don’t know what the next few days will bring. My intellectual side knows what the last few days are pointing at, but my heart refuses to believe it. Kay is slipping from us, quickly. Her pain is no longer tolerable, for any of us and we all are praying for the same things that we prayed for with both my Mom and with Sara . . . peace. Peace is hard to come by these days.

To quote Forest Gump . . . "Sometimes, there are not enough rocks." There aren’t enough rocks to knock down the pain of watching this happen again. There just are not enough rocks to handle the pain I feel at this very moment.

Absent

2005-07-17T22:26:00.000-05:00

Too much going on here to post right now, brief update instead.

Aunt Sophie remains in the hospital tonight. I really thought she would be released to come home today, but now we are shooting for tomorrow (Monday). We pray that she is able to find the strength that she so badly needs right now and that her current course of treatment will continue to help her.

Kay is rapidly going downhill. This has been the worst of her days thus far. My Dad is with Aunt Sophie, I am here with Kay. Tonight, I called both of her nurses and they have come to stay with her overnight so that I can try to get a few hours of sleep. After a very long day, horrible afternoon, and heartbreaking evening, she is finally resting. I am so glad, she was fighting the rest that she needs so much, it finally has overtaken her and she has no choice but to rest.

I have come to you all several times in the past few months and begged you to pray. Tonight, I am doing the same. If you pray, please do so right now. If you worship a higher power, please offer up a plea for our family, Kay and Sophie most of all. Whatever you do, please do it.

I am watching someone die in front of me again. I am not sure I can do this. I don't know what else to do but plead for your help.

Thanks to each of you from our family for everything that you are doing to help us during this time. I will post when I can.

Liberated

2005-07-13T20:04:00.000-05:00

Thank you all for your e-mail(s) of concern. I know I said I would post more on Friday, but I just couldn’t force myself to do it at that time. So much has happened (as usual), it is near impossible to know where to start.

Friday I took Kay to the clinic for her near weekly blood transfusions. Before clinic, she had the scan that I posted about in the previous entry. My Aunt Sophie was to come in later in the afternoon to speak with the doctor about the results. The doctor stopped by to see Kay in the clinic before Aunt Sophie got there. I had stepped out for what was the second food run of the day (I will go on a million food runs as long as she is eating something). Per Kay’s request, the results of the scan were not given to her. Kay just simply told her that she had plans of things to do with the next few weeks and if she had less time, she would need to know. She was told to go forth with her plans. I came in as the doctor was leaving and she told me about the conversation. I didn’t know if I wanted to know the results of the scan either, so I just asked if her time frame was inaccurate based on the scans. She told me no, she didn’t believe it to be so.

This weekend held many memories in the making, both with Kay and with my husband Alex being here. Sophie started taking a new medication on Friday night which made her feel ill all day Saturday. Kay was exhausted from her week of busy outings, so we took the time to catch up on some movie viewing. We first watched Diary of a Mad Black Woman. If you have not seen this movie, I suggest you stop reading this and go get it . . . RIGHT NOW. This movie had a very profound impact on my life and I am not sure I will be forgetting it anytime soon. While the main plot was about love, it was also about losing something you love very much. A quote stands out in my head that applies to our daily lives right now; "We fight so hard to hold on to the things that God, Himself, is trying to tear apart ." So true, so very true to life right now.

We also took time to watch Coach Carter. It was also another great movie with a wonderful message. Pick it up when you go to rent the other, okay? One of my favorite authors was cited in the movie as to what our deepest fear is.

"Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won't feel insecure around you. We were all meant to shine, as children do. It's not just in some of us, it's in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others."

Something to think about, I say. You can check out more by Marianne Williamson by clicking here. She has a wide variety of material out there and is worth taking a look at.

Sunday we as a family went to services. Kay made the choice to speak with the Pastor about being rededicated. We have spoken with him and that is set for the next service. Kay has always been a deeply devoted Christian, but as the Pastor said, it is perfectly acceptable at this stage of her life to want to know that all is straight with God. While Kay is perfectly content in this, the rest of us know what it means and aren’t taking it as well as we could be.

Monday morning Kay surprised us by asking to leave the house for the day. My in-laws were bringing Emily in for the day when they picked up Alex. I just assumed that Kay would want to be here. However, she decided that she just didn’t want to be here and I can’t blame her, it was rather chaotic for several hours. She took it upon herself to ask us to dial the phone for her, and she wanted to talk to Barb. After asking Barb if they could go out, she told us she was going out, to not wait up! She ended up spending the night at Barb and Andy’s and then helped to cook us breakfast the next morning. She even helped to bake cookies for Sophie!

On Tuesday evening, Kay had a massive seizure following several mild type seizures (undetermined type at this point). We spent the greater part of the morning at the hospital trying to determine the cause(s) of this incident. Basically all we know is that a stroke isn’t the cause and a bleed isn’t likely. Her Decadron levels were slightly lower than the therapeutic levels, so we are praying that this was the cause. It has been increased, so over the course of the next few days, we should be able to see a difference and a decrease (or a complete stop!)in seizure activity.

That about sums up our week thus far. Tomorrow I am taking Sophie to her follow-up appointment in Tulsa. Alex has made it safely back to Germany and Emily is with her grandparents in Ohio. I am very sad at this, having several days with Alex has been wonderful. Emily is growing up and I am missing it. She is just an absolute doll and it was hard to put her in the car and watch them drive away on Monday night. However, I need to be here and am just very grateful that Emily is so well taken care of right now.

I will post more by the end of the weekend, I won’t promise when. I literally have about two hours each day to spare and trust me, sleep is generally at the top of my list of things to do. Your e-mail has been a blessing. I can’t tell you what your support does for all of us, it is good to be so loved.

Repeating

2005-07-07T17:24:00.000-05:00

The days are a blur. Today is Friday? Monday? Thursday? Each moment seems to fly by and I can’t make the minutes stop. I want to hold onto every precious second I can, but they seem to slipping from my grasp. My Aunt Kay seems to be slipping from my grasp as well. The tighter I hold on, the more fiercely I realize she is fighting to let go. We have been forced this week to come to terms with that. I admit none of us are doing well.

Many things have happened since my last posting, as usual. Kay has had several bad moments/hours and even more moments that she scared us all. She has had a limited amount of good hours, yesterday being a day full of them. (More on that in a moment.) At my Aunt Sophie’s request, Kay will be undergoing a very quick and minimally pain free scan tomorrow morning before she gets her weekly transfusion. Kay has agreed to this, her only request is that we don’t share the results with her.

My Aunt Sophie is having some guilt over putting Kay through an obviously pointless scan, but we all support her. In all honesty, I am grateful she is doing this, asking that this be done. So many things have been happening this week and while we have all been assured it is normally given where Kay is right now, I think we all would like proof positive of this. It changes nothing. Kay will remain on hospice and we will support her wishes against no further treatment. She is tolerating our request that she go in for weekly transfusions, and we will honor her request to not know where things are right now.

Monday evening we were sitting with Kay when her breathing changed, suddenly. Since the first surgery and the lung infection that followed it, Kay has had minimal problems in the breathing department. She is on constant oxygen, and this does help. However, Monday evening, it was different. She went from being labored to panting, to barely being able to breathe at all no matter how much oxygen she was getting. It was scary for all of us, terrifying for her. We don’t know why this happened. We are told that it isn’t a sign of imminent death, but rather a sign that things are progressing at the rate that we were told they would be.

On Tuesday, after the scare Monday night, my Aunt Sophie was urged by not only us, but by a close friend to speak with Kay’s physician. She did this and walked away with a bit of comfort in knowing that Kay’s death is not going to be today or tomorrow, but will most likely follow the time frame closely. She was again reminded that there will be more signs such as this one and that as the time gets closer, we will be acutely aware of when to follow thru with Kay’s wishes. Although none of this is easy to hear or to comprehend, it is easier to realize that certain things (i.e., change in respirations coupled with Kay’s outrageously high heart rate from the night before) do not necessarily mean upcoming death.

Kay has started to ask for things that we can’t A)understand, B) help her with, or C) do anything about. These include asking for people we don’t recognize, talking about things we don’t understand (ex. crossing a pond to get to where she is going. Does anyone understand this?), and finally, telling us that she saw my Mom. While none of us are certain if it is medication induced or exhaustion induced, we are remembering that in my Mom’s final days, she had many "visitors" that she found great comfort in. While my Mom didn’t speak of many things that we didn’t understand, she did ask for things that we couldn’t help her with. Kay has started to do the same. It is becoming very clear to all of us that Kay’s doctor has been very accurate in what will happen to Kay.

My Dad and I spent yesterday in Tulsa with my Aunt Sophie. As stated in a previous posting, Sophie has MS. In the past few months, her MS has gone from Relapsing-Remitting to what it is now, Secondary-Progressive. She has two treatment options at this point. The first, is limited in the quantity that she can receive in her lifetime. Novantrone is potentially life threatening if used over and over again. It is, in all simplicity, a chemotherapy agent. Her other treatment option is to remain on a course of Cytoxan indefinitely. That is not an option she is ready to take at this point in her life, so Novantrone it is for now. She had her first dose almost three months ago and the second yesterday. We were prepared for the same side effects as the first dose. What we got instead were the same side effects magnified by 10. To say that she is suffering right now is an understatement.

She is currently taking two of the same drugs that Kay is taking, Zofran and Ativan, in order to control some of the side effects. Thankfully, the use of these drugs will be short term for Aunt Sophie. (They are both parts of Kay’s daily medication regimen.) Right now, she is sleeping off the afternoon dose of her meds. We have been diligent in checking for any sign of fever or infection. Both which could be dangerous for her at this time. Many of the restrictions that are in place for Kay will be in place for Sophie for a few days as well.

(As always, please do NOT come if you have been sick at all in the past 72 hours or have been exposed to ANYTHING that could be contagious or infectious. This rule is always in effect! While we are not at a point that we require scrubbing in at the backdoor, if it comes to that again as it did with Mom, we will be making it a mandatory rule. It is not an option! It is for Kay’s, as well as Sophie’s, health that we ask you to follow the rules. Any infection to Kay could be fatal, and we will not be taking that the risk. If you have any questions about your current health status being acceptable, please call and speak to either my Dad or myself. We would much rather you ask than expose either Aunt to something that they can’t fight.)

Yesterday, while we were in Tulsa, we left Kay in the company of Caroline and Julie. For those of you unaware, Julie is Kay’s overseeing hospice nurse. They are slowly forming a bond, but Kay is most certainly more comfortable with Caroline right now. If you knew Kay pre-diagnosis, you know she has never met a stranger. That all changed after the diagnosis. Cancer does that to a person, I suppose. Sara became a little introverted (totally unlike herself) after her diagnosis and in the final months, I think my Mom did as well. Perhaps it wasn’t the diagnosis of cancer, but the realization that terminal cancer will take your life? Since the diagnosis and certainly since April, Kay has a very hard time with new people. It takes her a while to get adjusted, she seems to get overwhelmed, very quickly. Once she gets to know a person, she warms up and a little of old Kay begins to emerge. Although hard on her, she does very well once she becomes comfortable with new people.

We expected that Kay would have a semi-good day, but we were still very concerned with leaving her. We were shocked to hear all of what she did yesterday! From going shopping at her favorite store, to eating out at one of her favorite places, to swinging at a local park, we were amazed! (Not to mention she bought me this incredibly beautiful item! I’m a sucker for a bargain!) She was so worn out from her big day that she slept 11 hours straight, an unheard of record! Today she is spending it alongside my Aunt Sophie, both medicated to the point of being able to sleep.

Tomorrow holds a number of unknown(s) for all of us. Please say a prayer as we face uncertain news. I will post more tomorrow, for now, this short novel should be enough to let you know where we are in life.

Tally

2005-07-03T21:59:00.000-05:00

I have tried to find time to write this several times in the past few days. Each time, I get two sentences written and something happens to make me realize I can’t take the time to do it. However, tonight, I am putting everything on hold to play catch up both here and in my e-mail, so if you are waiting on an e-mail from me, surprise, it’s coming!

As always, life at the Linda is hectic. Let’s take a score for the whole family, shall we?

Past ten days:

Clinic visits = 1
Emergency room visits = 1
Hanging baskets purchased = 15
Dogs missing = 1
Hours of collective sleep = 12
Number of people now sleeping in the den to be closer to Kay = 5
Number of casseroles people have brought to our home in the past 5 days = 21

This is just a small glimpse, but you can see where I am going with this. Every day it is something else, with someone. Kay has had several good mornings/days in the past few days. I can’t say the same for the rest of us. Sophie is having some major health concerns right now, which she is having a hard time coping with the fact that she needs to take care of herself, we have Kay covered right now.

I wanted to write tonight and tell you of all the things we have done this week with Kay. I wanted to tell you about hanging basket shopping, lunches out, church outings, long drives. I wanted to capture how much fun we have had this week, just living out Kay’s every desire. Instead, tonight, I want to share with you something that will help you know exactly what we are dealing with right now. I want to tell you that we are all afraid we may not have the time estimated with Kay. I want to tell you that I am not sure I am strong enough to let go of yet another person I love. I want to tell you, this is hell.

This evening, during a particularly bad hour for Kay, she required restraint in order not to harm herself. My Aunt Sophie was on one side, and I was on the other. My Dad held Kay’s legs firmly as we waited for the moment to pass. As we stood there, unable to speak, I noticed that Sophie had tears streaming down her cheeks as she looked down at her own hands firmly holding Kay down. It was then that she said the words that may haunt me for the rest of my life.

"Where is God while I am forced to hold down the arms of my wife? Where is God as she reacts to the fear of not knowing what is going on? Where is God, Shelly?"

I was unable to speak and forced myself to choke out a lame "I don’t know." I want to believe He was there, holding onto Kay to bring her comfort. I want to believe that He is preparing a place for her in Heaven alongside so many others that have joined Him recently. I want to believe that he was whispering to Kay’s soul soothing words. The truth is, I don’t know.

A few nights ago, I received an e-mail from someone my Mom was very close to during her final year. Since my Mom’s passing, I have been keeping in touch with this person. In her e-mail to me a few nights ago, she said to me, "I still have enough faith in God to believe there still may be hope." I wish I could say I thought of it first and that I had hope all the way through, but somewhere along the way, the little bit of hope I reaffirmed in my life, I lost. Hearing this simple sentence from someone who was devoted to my Mom, helped me to realize that I can’t lose faith now. Things may not turn out as I wish, but I can’t lose hope. I need to hold onto hope until He reveals His plan to us. So, hope I will hold as close to my heart as I can for as long as I can.

I have much, much more to write about, but tonight, my eyes and heart aren’t working together. It is time for me to close. Next time, I will share all about Kay’s journey to church and her renewed love of a little place we like to call Starbuck’s. Wait, I’m mistaken, that’s me. Oh well, I will share that little tidbit next time as well. I promise next time will be sooner than this time.

Choices

2005-06-24T22:52:00.000-05:00

As always, so much has happened since my last post that I am not quite sure where to begin. I hope you all have taken a look at this post and have taken the time to listen to the song mentioned. As someone told me a few nights ago . . . "I needed to know what it was like to be held." So do I, Rene’, so do I.

Since my entry one week ago, a lifetime of change has happened. My Aunt Sophie lost her Aunt suddenly and flew to Utah on Sunday with much prompting to be with her family for the funeral services. I know it was extremely hard for her to get on that flight, but I know it was something she needed to do for closure. A very close family friend, Bear, accompanied her on the flight and ended up returning with her on Tuesday and stayed throughout today. We are grateful for his willingness to come support us at this time. Thank you, Bear.

Kay ended up going back to the hospital on Tuesday and remained there until this afternoon. She initially went in to have fluid removed that was pooling near her heart and lungs. She is struggling with some news that was handed down after the procedure. She is also coming to terms on a decision that was made on Saturday.

This decision has rocked our family, broken our hearts, and brought us to our knees, but in our hearts, we know it is best. Kay is not responding as hoped to chemotherapy nor to radiation. Due to all of the complications in her treatment plan, there have been several delays in treatment. Her last set of scans revealed several areas of cancer that were not noted on the mid-treatment scans nor on the pre-treatment scans. As some of you may or may not know, Kay has a secondary cancer of undetermined origin. This cancer resides solely in her bone marrow. On Tuesday it was also discovered that the fluid in her chest cavity was not fluid, but a solid mass.

On Saturday morning, Kay signed herself into hospice care. It was not an easy choice for any of us, especially for my Aunt Kay or my Aunt Sophie. We fully support Kay’s choice and only want the next few weeks of her life to be as painless as possible. The past week has brought to surface many, many memories that I believed I had blocked well enough to never remember them again. We are all struggling with this, but our hearts know that this is best for Kay. We rejoice in the fact that there will be a day in the upcoming future that she will join my Mom and my Sister and many other beautiful Angels. We are saddened that we will need to release her in order to do that.

It has been a very difficult week. On Wednesday, I decided I needed to see both my husband and my child so I began a whirlwind trip to Ohio. I did get to see Emily for a few hours and Alex drove back with me late last night. We drove straight to the hospital to be with Kay this morning. He will be here for a few days and then Emily will arrive with her grandparents. Right now, I can’t place my focus on her, she needs to be with people who can. Her Nonny and Poppy have filled that role with amazing love. I know she is very well taken care of when she is with them, not to mention spoiled rotten. Someday, I pray she understands why Mommy missed so much of her life.

Kay is finally resting. Evenings and nightfall are very bad for her as she is experiencing drastic degrees of sundowning. It takes about six hours to get her to place of calmness in which she can sleep. We are trying some new medications and are praying to God that they work as she just needs to find a working combination or the next few weeks will be hell for her.

I wish this post had a more cheery tone, but truthfully, as I type this I am sitting here sobbing. I’m not sure I can pull off cheery.

Holding

2005-06-17T10:39:00.000-05:00

I have much more to say than I can post right now. We have an appointment ~~tomorrow~~ today that will change the course of our lives. Please pray that we have the guidance to handle what all we will be given ~~tomorrow~~ now.

In the meantime, I would like to share a song with you that was played at Sara’s memorial service. The following is the introduction the song that is read by the artist before the start of the song.

Before you read this . . . Please click on the following link in order to hear the song! (Thank you SO much, Erica!). If when you click on it, it doesn’t take you to a direct download of the song, do not worry. Just copy and paste the link into your browser bar! Trust me when I say this song will be worth the time it takes to do so.

http://www.30fps.org/Quickstart/AudioLib/Held.mp3

"Most of us have experienced the death of a loved one or we've watched somebody that we know and love experience the pain of losing someone that they love. Maybe this is even happening to one of you right now or to someone that you know in your circle of friends, your school, your work, your prayer group. My friend Christa Wells wrote this song after she had lost two people very dear to her in the span of 48 hours. I recorded this song in the prayer and hopes that it would bring comfort to a lot of people. The first time I heard it, honestly it just moved me to tears. Christa found a lot of comfort in the message. My prayer and hope is that you will, too." -Natalie Grant

The following is on her personal website to intro the song:

"Christa Wells, a part-time songwriter and stay-at-home mom of three in North Carolina wrote this song in response to two very difficult losses that happened within 48 hours. And for her, I think it must have been one of those total shake-your-fist-at-God moments where you cry, "Why God?" These are the things in life that we cannot understand or explain, and the lyrics reflect that honesty. God didn’t promise us we’d be okay or that life would be easy. My faith does not protect me from pain, but it provides me with peace. God only promises us that when we suffer, when we’re in pain, we’ll be held in His arms through every circumstance."

The words are as follows:

Two months is too little.
They let him go.
They had no sudden healing.
To think that providence would
Take a child from his mother while she prays
Is appalling.

Who told us we'd be rescued?
What has changed and why should we be saved from nightmares?
We're asking why this happens
To us who have died to live?
It's unfair.

Chorus:
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we'd be held.

This hand is bitterness.
We want to taste it, let the hatred know our sorrow.
The wise hands opens slowly to lilies of the valley and tomorrow.

(Chorus)
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we'd be held.

Bridge:
If hope is born of suffering.
If this is only the beginning.
Can we not wait for one hour watching for our Savior?

-Held, Natalie Grant

Right now, we all need to know we are held. We all need to know that someone realizes life is too short and we feel like we are falling thru the cracks. The song spoke volumes to me, it reminded me that I am far from alone, that somehow the darkness will turn back to light, and that someday, somehow, I will feel held again.

Ladybug

2005-06-15T16:01:00.000-05:00

So much has happened since my last post, I truly am confused as to where to start. Today marks two years since my sister Sara located her blue and yellow angel wings and took flight. I expected that this anniversary would consume my week, take over every rational thought, and break my heart. In all honesty, it hasn’t been the first thing on my mind or the biggest in my heart at the moment.

That isn’t to say that I am not crushed at the thought that it has been two years since I last saw her alive. That isn’t to say that during the Sigma memorial service tonight I won’t break down and curse God for ever taking her away. That isn’t to say that one moment goes by that I don’t miss my Ladybug. What it does say, however, is that I realize that I miss her just as much today as I did yesterday and as much as I will tomorrow. The events that are happening in our lives right now seem to have made Sara’s angel date a little easier to cope with.

Both Aunts are still home, for which we are all very glad. Sophie’s arm and such seem to be doing well. She doesn’t tell us when it is hurting, so it is a battle to get her to speak up. I think today she is having some pain from overdoing it yesterday. She will see the orthopedic surgeon again in one week to make sure the bones are calcifying correctly.

Kay, on the other hand, isn’t doing as well as we had hoped. She is tired (who wouldn’t be), hurting (I can certainly understand why), and is dealing with some very difficult choices right now. Late last night, a new bed was purchased for her. So far, it seems to be helping. We are keeping our fingers crossed as she wasn’t getting much rest in the old bed. She goes back to her oncologist on Friday, at which time I will be able to tell you more.

As for part one of the Auntie’s surprise . . . they were treated to a lovely (and very romantic) pre-sunrise breakfast and then taken up, up, and away in a corporate Altoid hot air balloon while they watched the sun rise. Once that part of the morning was over, they were driven back to where Dad and I were in a very special transportation method . . . a horse drawn carriage complete with a driver in tails! (Thanks Derek, we couldn’t have done it without you!) Since they were both clueless as to what was being planned, it did turn into a very nice surprise for both of them.

Part two is still coming and I can’t reveal anything other than this:

1) The Statue of Liberty . . . it’s gone!
2) Dickens didn't have a clue.
3) Moon River, old crooner!

More to come later. For now, I have to prepare for Sara’s angel service. Something tells me I’m going to need more tissues.

Relay

2005-06-12T20:51:00.000-05:00

Tonight my post will be jumping from subject to subject as I have much to say! First, I would like to say that my heart feels great relief to have posted my previous entry. It needed to be said aloud, I think. Now that it has been, I feel we can all move on with our lives.

By far the most exciting news I have tonight is that BOTH AUNTS ARE HOME ONCE AGAIN! Sophie was released about two hours ago, but Kay came home this morning. These two with their tagteam hospitalizations! I have warned them both that this needs to stop!

Sophie’s collarbone is broken, not just fractured, so she is moving very slowly. Kay is moving almost at the same speed. However slowly, my Dad and I are just glad to have them back under the same roof (and preferably not the hospital roof!). At the moment, I think they are both fast asleep as it has been a long day for everyone.

They have both asked to watch the Relay video in the morning which brings me to my recap of Relay for Life. All totals are not in yet, but as of this very moment, "The Lively Pink Ladybug" team has raised a total of (drumroll, please) . . . $7,458.92. We are in both shock and amazement at their efforts to raise money for a cause so close to our hearts.

My Dad and I went down early on Friday to visit with the Sigma sisters and take part in their final fund-raising events. As we sat at their campsite, my heart was filled with joy while I watched the Sigma sisters share their story with anyone who stopped at the tent. Their love for Sara remains as strong today as it was when she was alive. To any Sigma sisters who are reading this, I cannot express to you how impressed we are with each of you. Your commitment to Sara’s memory as well as to my Mom’s . . . is something to be praised for.

My Dad and I were to give the survivor’s speech at Relay this year. I think we both knew that it was going to be an impossible speech to complete without many tears. What I don’t think we were prepared for was the gamut of emotions we had even before beginning our speech. As we walked down the path to the podium before the opening ceremony, my Dad suddenly stopped and just pointed across the track. I glanced to where he was looking and saw nothing but a row of luminaries lit for both Mom and for Sara. The Sigma sisters had decorated a number of them in daisies for Sara. Immediately the tears began to fall and I didn’t even try to stop them.

We took our places on the stage and soon it was our turn to speak. At some point, I will be posting the contents of our speech. For now, I will just comment on one small part. Halfway through our eight minute speeches, my Dad broke his even tone with a sudden sob. As I looked up into the stands as he took a moment to gather himself, I saw a row of people in purple shirts with gold lettering. As I tried to read the shirts, I began to lose my breath and the tears began to flow once again. So . . . to the group of ladies who proclaim themselves "LADYBUG LOVERS," I give my gratitude. You haven’t forgotten, thank God, you haven’t forgotten our Ladybug or the one who gave her wings.

Once our speech was complete, we took our places at the start of the survivor line in order to walk for Kay. It was the most emotional walk of my life as I turned to see nothing but a sea of purple following us. Purple signifies survivor and how my heart jumped at the thought that these brave people had made it. It was bittersweet to realize that there should have been two more survivors out there that couldn’t be. Once we made the complete walk of the track, we participated in the release of balloons. As I let go of the string, I made my silent wish for Mom and Sara to grab onto the love that I sent with it.

Once the sun began to set, my Dad and I made our way back down to the track from the Lively Pink Ladybug tent. This year, we had the honor of carrying the luminary torch as the luminary names were being read. I had reached a point that I thought I was all cried out. I was wrong. As my Dad, Andy, Barb, Caroline, and myself walked the track, I caught myself glancing back to notice that luminaries all over the stadium were being lit. In the stand, the word HOPE was burning brightly and I realized right then something about my Mom.

The one word that anyone whoever met her would use to describe her would be that she was full of Hope. She was filled with hope that she was marrying her soulmate, my Dad. She had hope that she was raising all of her girls in a manner that would honor the Lord. She had hope that one day she would be a Grandmother. She had hope for the past, present, and the future. Finally, when her illness became clear that it would one day take her life, she had hope for peace. She had hope for a cure and hopes for a saving grace. When that didn’t come, she found hope for peace, which she did attain.

As the wording was changed from HOPE to CURE, I realized just how important this Relay was. We are a very realistic family. We know that cancer will one day take another member of our family. However, we will never lose sight of the hope for a cure so that one day, we will not have to hear those words again . . . "He/She has cancer."

This has turned into a much longer post than I anticipated! The funny part is, I have so much more to say, I could keep typing for hours. We have some downtime this week from the medical world, at least three days and we have a giant surprise planned for BOTH Aunts. I can’t say anything just in case my Aunt Sophie decides to read this, but I can say this:

1) Up, UP, and Away.
2) Altoid, anyone?
3) Giddy-up.

If she can decipher the surprise based on that, more power to her! (I love you, Aunt Sophie!) After the last few days, they both deserve every surprise we can give them. My Aunt Sophie is having to come to terms with a number of things, Kay’s medical condition being the largest, of course. The second is that we are all realizing that you can love someone deeply and still be crushed beyond words when they make choices that change the course of your life. It’s a hard lesson to learn, but one we are all learning together. Now that she is dealing with the broken collarbone issue, it adds just one more problem to the mix.

It’s storming fiercely here, so I better get this posted before the electricity goes out once again. Another post is coming tomorrow filled with even more of the past few days!

Release

2005-06-12T00:59:00.000-05:00

Often in life, the time comes for true expression of feelings. This is one of those times. Today, my family and I were forced to sit down and make some choices, hard choices. Although Kay’s health is the most pressing situation in our lives right now, this time of choice making had nothing to do with her or the medical options being offered at this time. Instead, it was about love and letting go.

The time has come for our family to let go of someone we love. They aren’t in ill health, aren’t going away, nor do they realize it is time to let go. However, it has come to our attention that our love for this person is unhealthy, both for ourselves as well as for her. We have come to depend on her far more than we should and each time we count on her, we realize that she needs to be helping herself, not us. In our hearts we have started to have let go, confident that this is best for everyone.

The love that we have for her will never fade. She has been a part of our lives for a very long time and has been instrumental in keeping us together the past few years. We love her and that will never change. Although several thousand miles separate us from being with each other, we have constantly kept her in our thoughts. That won’t change as we let her go. I don’t believe that any of us will be able to keep her from our minds in the upcoming years. We have shared too much, know too much, and love too much not to think of her often.

We wish her the very best in everything she attempts. I know that I speak for our entire family when I state that we believe she will go very far in her life and her career. Each of us comes to a point where we have to carry ourselves and now, the time has come for her as well. We all know she is capable of doing this, and she just needs to spread her wings and fly. Our family surrounds her with love as she learns to do this. Soar with the eagles, my friend.

I needed to get this out of my head, needed it to be heard, and needed to know it was over. I have much more to say and no emotional strength left to say it with. Tomorrow a new post will be coming with Relay updates, Kay updates, and some very exciting news for all of us.

Ongoing

2005-06-04T00:11:00.000-05:00

Things are hectic here. Kay is back in the hospital for chemotherapy. So far, she has handled it well. Each day is a struggle, but she is doing it. We are proud of her. In the coming days, I will be writing more of what we are facing. For now, please just pray for Kay, for Sophie, for our sanity.

Father’s Day is quickly approaching as is Sara’s Angel Anniversary. Life is continually clouded over with sadness. Facing the current situation only adds to our grief, intensifies it, and makes it very hard to find good in each day.

We, as a family, have been invited to speak at the area’s Relay for Life. Last year, a group of Sara’s Sigma Sisters formed the "Lively Ladybug" team in her honor. This year, they have added onto their team. This year, they are raising money for the team named "The Lively Pink Ladybug." It is a tribute to both Sara as well as to my Mom. As we prepare our speeches for Relay, we are remembering just what this event means, especially to our family. We remember your dedication to our Ladybug and to the center of our family, my Mom. Girls, we love you and commend you upon your fund-raising efforts. We will see you there.

For now, I need to get back to Kay’s side. The days are long, and the nights are longer. Please pray.

Votum*

2005-05-31T11:30:00.000-05:00

If you have ever been to this point, if you have ever felt there was no way out, if you have ever thrown up your hands and given everything you have up, you know where my family is right now. Please pray.

I had another entry ready to post, it will come later. This is so much more important. My family is breaking, hearts are being shattered, hope is being taken away. Please pray. Voveo Vovi Votum.

*Votom=Latin, to pray, to plead, to desire.

Magnificent

2005-05-28T15:35:00.000-05:00

As someone pointed out to me earlier this week, I have several things that can be considered good news and I should willingly share them. (You know who you are. Thank you. I did need to hear it from your point of view.) I should be shouting from the mountaintops that Kay has beaten every odd given to her. She has made it through more surgeries than anyone ever expected. She makes strides every day to show us she wants to recover. This is good.

Tonight, however, I have news that even I know is good. Four simple words, shouted from the heavens, to show that my very soul is down on both knees thanking God for the ability to say this.

We are ALL home.

There will be more later. For now, I have two Aunts who are tuckered out and need to be settled, one Father who is rummaging around for food and needs to be fed, two cats who are prancing around here and need to be tamed, and one dog who is very, very spoiled and needs to be rubbed.

Four more simple words:

Life is so good.

Finally, four more words that I am learning are not so simple, yet so magnificent:

God is so great.

Unspoken

2005-05-22T01:42:00.000-05:00

I know it has been ~~almost~~ two weeks since my last post and I would love to tell you that everything is great, no reason to update. However, that isn’t the case. Life just has a way of making some duties more important than others and leaving little or no time for the rest. This is what has happened as of late. Also, I am running out of good news to share, so it feels like all I have done is blog to complain. How I long to share with you great news, perhaps I can find some in this posting?

In the past two weeks, I have made a trip back to the Linda, have flown to Boston and back in less than 24 hours for a funeral of a family friend, and have witnessed the intensity of the love that my family shares. I have sobbed many tears, treasured each moment of laughter, and cheered on my Aunties as they both fight the biggest battles of their lives.

Kay is still in Tulsa. She has been in the ICU twice in the past two weeks. She has almost finished a ten-day round of radiation and has done semi-well with it. She had chemotherapy on Monday and again on Friday. We have added a new chemotherapy agent to the mix and we are praying for the expected results. There is talk of releasing her to come home this week, we are hoping it is more than just talk, but rather the truth. She will need intense help once she gets home, but as we all know, home is the best place to be at times like this.

Sophie has had a rough few days, but is doing a bit better. She is pushing herself far too much, and it is not healthy for her right now. She wants to be with Kay every waking moment and that isn’t what is best for her health right now. We are in the processing of making realistic goals for the both of them, I hope it helps. They are both very devoted to each other and will push themselves as much as necessary to help the other. This is not always the best scenario and we are trying to teach them that.

My Dad and I are hanging onto whatever we can these days. Right now, we are trying to prepare for both Aunties to return to the Linda. Lots of things will need to be done and be completed quickly before Kay gets to come home. I know we have a team of what I like to call "Shar’s Angels" who are now preparing for Kay’s return in the same manner they prepared each time my Mom came home. I suppose I should name them Kay’s Angels, but truly, they are all devoted to my Mother and her memory. We love you all and thank each of you! As my Mom stated numerous times, we are blessed.

Specific prayer requests are following:
For Kay’s continued progress in physical therapy.
For Kay’s course of radiation to show positive effects.
For Kay’s chemotherapy to continue to be available to her.
For Sophie’s recovery from this latest setback.
For Sophie’s sanity as she deals with certain emotions right now.
For Mom’s best friend as she travels to Florida, I know it will be hard for her to be far from us.
For Tessa and Denver’s family as they deal with the loss of a very close family member.
For Dad as he faces the upcoming Father’s Day-another without Sara.
For Alex and Emily as they travel to the States next week.

I am going to close this for now, there will be more to report tomorrow. For now, I am going to tuck in Auntie Sophie and find a place to stretch out for a few hours. Please keep praying for the many mentioned requests and the hundreds of unspoken requests that we send up each day.

Thank you all. We love each of you, far and near.

Bittersweet

2005-05-08T12:50:00.000-05:00

Another post in less than 24 hours. It must be a record as of late. My heart is heavy as I write this. For weeks, I have been dreading this day. Today is the anniversary of my Mother’s death. Six months she has been an angel, and 180 days she has been gone. Today is also Mother’s Day as you all know. This day is bittersweet, more bitter than anything.

This is my second year as a mother and my first without my own mother. The sweetness of the moment is carried away by the immense sadness as I realize I have no more Mother’s Days with my own mother. I should be celebrating with joy that I am a mother to a beautiful little being. Somehow, it hurts too much to celebrate that fact right now.

Last year when this day rolled around, my Mom refused to even acknowledge the day. My heart was broken and I didn’t understand how she could just not celebrate it. Yes, Sara had died, but she still had me, right? This year, I understand it. I don’t want to celebrate it, acknowledge it, or take part in it. Someday, I hope Emily will forgive me for not being the mother I should be.

Someone shared with me a few nights ago the pride that my Mom had for me after Emily was born. While I don’t know that she had a reason to be proud, it made my heart go pitter patter as I was hearing this being told to me. Everything I am, everything I do, everything I hope to be as a mother, I learned from my Mother. She was the best anyone could ever ask for. My Mother was superhuman, an angel with no wings. I don’t say this to brag, I say this because it is true.

If I am half of the mother to Emily that my Mother was to me . . . Emily will be incredibly lucky. My Mom was an amazing woman. Everything that I am, she taught me to be. She taught me how to love with all of my heart, to look for the good in mankind, to search within myself for the truth. I want to teach all that and more to Emily. I want her to know about her Grandmother, to know the legacy Mom left behind. Most of all, I want Emily to be as proud of me as I am of my Mom.

Several songs and lines of poetry come to mind today as I search for the right words. The morning that my Mom passed, my Dad sat next to her as I stretched out on the floor next to the bed. The lights were dimmed and it was shortly before the sunrise. Out of the darkness, I heard my Dad’s beautiful baritone voice begin to sing this chorus to my Mom:

"If you get there before I do,
Don't give up on me.
I'll meet you when my chores are through.
I don't know how long I'll be.
But I'm not gonna let you down.
Darling, wait and see.
And between now and then,
Until I see you again,
I'll be loving you . . .
Love, Me"

My Mom got there before all of us. Someday soon we will all be together, which is a day I look forward to with each passing moment. In the meantime, not one of us will ever stop loving her, not for one second. She is with us, always. If I stop and let myself, I can almost hear the sounds of her laughter echoing within my heart. I can almost feel her holding onto me when I need it most, like right now.

You’ll Never Be Forgotten"
Jessica Andrews

"I’ll always see your face
The corner of your smile
And all the little things that no one will ever know
Like it was yesterday, won’t ever fade away
Goodbye is just a word that I will never say

You will never be forgotten
A million days could pass us by
But what is time but just a dream
Oh I still feel you here with me
You’re more than just a memory
Oh you will never be forgotten

I can’t hold your hand
Or look into your eyes
And when I talk to you
It just echoes in my mind
But it hearts are made of dust
And if we fell from the stars
I look up tonight and know just where you are

You will never be forgotten
A million days could pass us by
But what is time but just a dream
Oh I still feel you here with me
You’re more than just a memory
Oh, you will never be forgotten

And the world just keeps on going
It has no way of knowing
That you’re gone.

You will never be forgotten
A million days could pass us by
But what is time but just a dream
Oh I still feel you here with me
You’re more than just a memory
Oh you will never be forgotten."

How I wish I had one more time to hold you, Mom. One more time to feel your arms wrap around me, how safe I always felt in your embrace. Someday, we will have that chance again. For the time being, not one moment passes me by that I don’t ache for your presence in my life once more. I know you are with Sara, kiss her for me. Run and chase her through those fields of daisies and know that you gave everything you had to your girls. I know how much you sacrificed for us, how you did without time and time again, just so we would have the best you could give us. On this, the 181st day of your physical absence, please know that we are wishing you a Happy Mother's Day, but even more so, wishing we could tell you it in person. I love you, Mom.

Dazed

2005-05-07T20:28:00.000-05:00

This will be another sporadic entry. Yesterday was a very emotionally draining day as we were working on the logistics of all problems concerning both Kay and Sophie. They both still remain out of the ICU. Kay is in a secondary care unit, not quite ICU, not quite a normal room. Sophie is in a normal room and looks like she will be released ~~sometime today~~ or early tomorrow morning.

Sophie is doing well, she is very anxious to leave the hospital. Each day she improves in some area, it is a slow process, but a hopeful one. She is ready to jump back in and help with Kay, but this will not possible quite yet. She still needs time to recuperate from this latest medical setback. I know I have not shared much concerning the details of Sophie’s hospitalization. This was due to the fact that I didn’t have permission to do so. However, I have been told that I can feel free to say something, so I will.

Sophie has Multiple Sclerosis. If you live in Canada or abroad, you know that May is National Multiple Sclerosis month. However, if you live in the States, it is in March. Whenever the month is, our family doesn’t need the reminder because we are already too aware of MS. Sophie has dealt with this disease for several years, always amazing us with her strength in facing it. She lives by a simple philosophy: "I do not live with this disease, it lives with me." That philosophy has kept her going when most of us would have given up.

For the past few years, she has been in a clinical drug trial, a trial she was doing really well in. However, due to other factors, she was abruptly taken from this trial a few weeks ago. This, combined with intense stressors of the current situation, caused her body to have an exacerbation or a flare. After much rest, several medications, and allowing her body to de-stress, she is doing very well and has allowed me to share exactly why she can’t be with Kay right now. I know she is anxious to be with Kay again, but we are more anxious just to have her back on a smooth road once more. That soon shall come to pass and we are looking forward to that day.

Kay is doing slightly better. Her first two nights out of ICU have been eventful. So far, it looks like she will remain out of ICU for the time being. There is always a chance she will need to go back, but we are praying against it. We are still waiting for the complete pathology report before any set treatment plans are in place.

My Dad and I are hanging onto whatever hope we can manage to find these days. This morning, it was hope because Kay was able to complete the physical therapy treatment with not having to stop mid-way through. She did this and pushed herself a little further. We are proud of her, she is amazingly strong. She has given us back hope.

I am in the middle of working on another post, a post that weighs very heavy upon my heart. I will do my best to get it posted before the end of the weekend. Please keep praying.

Progress

2005-05-06T00:30:00.000-05:00

I know I said I would write last night. I intended to do so, but once again, life got in the way of my intentions. Tonight, I am too tired to write the long post I had planned. Instead, I have good news.

BOTH AUNTIES ARE OUT OF THE ICU!

This is huge news as Kay has been in the ICU for 36 days straight. I am getting ready to head back over to stay the night with her during her first night out of ICU. She is struggling with many emotions and also struggling with the lack of understanding that she has right now. We are trying to learn to cope with this as it comes.

Sophie is doing better, not best, but better. There is talk of her being released from the hospital very soon. We will see.

I will write more tomorrow. For now, I am taking my pajama clad body back to the hospital to sit with Kay while she sleeps as she said she didn’t want to be alone. That I can do.

Rumors

2005-05-04T00:34:00.000-05:00

Added on: Donna, I can’t get into YM. I left my cell phone on the counter back at the Linda. Please call my Dad’s cell as he has everything that you need.

This will be a short entry as I honestly am worn to the bone and don’t have much to offer tonight. Kay is still in Intensive Care. She is doing fairly well. The biggest concerns right now are infections and controlling pain. Both are being handled with the best care we could ever ask for. She is still struggling with the emotional side of things. She has just now started to realize that Sophie isn’t available and that is hitting hard as well. There had been rumors of her being moved from the ICU by today. I think those rumors are now trying for Friday if all goes well.

On the subject of Sophie, she is doing better. She was placed in Intensive Care yesterday for precaution purposes only. Her blood pressure fell extremely low and she began to feel less than great. Her stay there was short lived. She was moved back to her room this afternoon as she doing fine now. There is no real reason as to why this happened, but we are just happy it’s over. I joke with her that I just couldn’t handle two Aunties in the ICU, so she needed to hurry her little butt right out of there. I suppose she took heed to my suggestion.

My e-mail is broken. Broken and not working. Broken and frustrating me beyond belief. Understood? Let me explain. ALEXANDER, IF YOU DON’T FIX IT SOON, I SWEAR I AM GOING TO START GIVING EVERYONE YOUR E-MAIL ADDRESS. I hope you like spam, because if my e-mail isn’t fixed soon, you are going to get a double serving of it. Got it? Now, sweetie, I love you and thank you in advance. Kisses.

I told you I was worn. I am slightly irritable and I am just exhausted. Little things are beginning to frustrate me as in the lack of working e-mail or the lack of being able to log into YM.

I will post again tomorrow night. It will be a post full of thank you’s and apologies. In the meantime, please know that we know that you are all praying. Please don’t stop.

Relief

2005-04-30T02:33:00.000-05:00

An update carried over from 4/26 @ 4:00p.m: Donna S. If you could please call my cell phone, I would greatly appreciate it. If you would like to e-mail me instead, you can reach me at asps@berlin.com as I can't seem to get into YM and I have some information I think you need.

Several things to talk about tonight, I will try to make as much sense as possible. I haven’t slept in almost two days. I am literally fighting to keep my eyes open, so please just excuse whatever grammatical errors I might make.

My Dad and Auntie Kay made it into Tulsa late last night. The ambulance road trip was semi-uneventful. They did have some problems before ever leaving, but it was a red tape issue and it was taken care of by late afternoon. By 2a.m Kay was settled into another ICU bay and was resting somewhat comfortably.

Her surgery was scheduled for 9a.m, but after meeting with the surgeon at 6a.m, we all made the choice to do a little watching and waiting to see if Kay’s blood pressure evened out. The theory was that it was elevated due to the stress of the trip. That must have been true, because by 12:30 the decision was made to take her to surgery at 2p.m. Her surgery was estimated to take between five and six hours. She was taken from us at 1:30. We didn’t see her again until 8p.m this evening. The actual surgery took 6 hours and 12 minutes. The surgeon came to speak with us while she was being watched in the recovery room.

Several months ago, Kay made the choice that she would not be undergoing any reconstruction surgery. The surgeon told us tonight that this was a very wise decision as he was forced to take out a greater portion of her chest wall than he first expected. She lost a great deal of blood, but we knew that would happen and the surgical team was prepared. Her blood pressure only skyrocketed once near the end of surgery, but it came back down without the aid of medication.

Her breathing situation has been a major concern. None of us knew how she would be able to handle breathing after being on the ventilator again during surgery. Surprisingly, the decision was made to remove the ventilator while she was in recovery. She has done fairly well with the aid of the bi-pap machine.

She will remain in ICU for a number of days. The main concern right now is making sure she doesn’t end up with any type of infection. Everything else has taken a slightly removed second place. Due to her current immune system, any infection could be tragic, so we want to avoid that in every manner possible. She is not in isolation currently, but I anticipate that if needed she will be.

Although she is still very medicated from the surgery as well as the many medications she is receiving to keep her comfortable, we were able to speak with her a few hours ago. She is aware that the surgery is over, that she did amazing, and that we all love her. She knows you all were cheering her on, so thank you.

Sophie remains hospitalized, but we have been told that she may be issued a pass this weekend so we can take her over to see Kay. I know she wants nothing more, so I hope this is achievable. Sophie slept most of yesterday, she does appear to have a bit more color today. She was able to hold down some soft foods today, and it is major improvement over the past few days. We know that she is trying hard, but she also knows that she needs to take time for her own health right now.

Thank you all for your comments, your arrivals, your prayers, your calls, and your concern in wanting to help. After my mini-nervous breakdown and your lovely outpouring of compassion, I must admit that I am handling things a bit easier today. I knew that they were coming, but when I looked up last night and saw Tessa standing in front of me (carrying a cup of coffee, I might add), I began to sob. They were tears of relief. I don’t think I realized just how much I needed someone else here right now. She immediately sent me to rest, but rest wasn’t possible. Instead I drove around the city while waiting on my Dad and Kay to arrive in town. Today, Tessa stayed with Sophie while we were at the other hospital with Kay.

Tonight, Sophie is having a sleep over with Barb. In the morning, I will return to that hospital to be with her while she goes through some grueling testing. After that we will be working on finding out about the mentioned pass. For tonight, I have been ordered to rest, so I am going to go to the hotel and do just that. Thank you for praying, please don't stop now.

Fatigued

2005-04-26T14:57:00.000-05:00

Update added on 4/26 @ 4:00p.m: Donna S. If you could please call my cell phone, I would greatly appreciate it. If you would like to e-mail me instead, you can reach me at asps@berlin.com I can't seem to get into YM and I have some information I think you need.

Two Aunts.

Two States.

Two Hospitals.

Two legal medical directors.

Six hundred miles between the two.

If this gives you any inkling as to what we have been doing, I hope you can forgive all of us for neglecting e-mail, phone calls, visits. Things are hectic here right now and this is my plea for some help.

Kay is having surgery on Friday in Tulsa. On Thursday, she will be taken by ambulance to Tulsa, 600 miles from where she is now. We pray for a safe and uneventful trip. My Dad remains in Kansas City with my Auntie Kay. He will be riding with her on Thursday as they make the trip via an ambulance to Tulsa.

She has currently been in Intensive Care for 27 days as of today. She has made some remarkable strides in recovering and we are all cheering her on as she overcomes some major challenges. She is talking and it is a sound we are thanking God that we can hear again. She isn’t walking, but is cooperating in thrice daily physical therapy. We know that it won’t be long before she is walking on her own. For now, we accept her challenges. She is learning to accept them as well. Her long term memory is clear and sharp. At times, her short term memory is the same. Other times she needs to be reminded of things. We can handle this, of all things, this we can handle. As she is given less and less medication, we expect the short term memory to come back full force. For now, we deal with what we need to.

I have not seen Aunt Kay since Saturday as I am running between Tulsa and the Linda. My Auntie Sophie is in the hospital here in Tulsa. She was admitted on Saturday morning at her doctor’s request. This was not an easy choice for any of us to make. However, in light of her own health issues, this is what is best and she understands it. She is feeling better, today. She began to hint at wanting to be released this morning. Unfortunately, we both know this will not happen for a few more days.

I am Sophie’s second choice medical advisor (the first being Auntie Kay), so I am with her. My Dad is Kay’s, it only makes sense that he remains with her. We are both battle worn at the moment. I don’t know how much more any of us can handle. Auntie Sophie is distraught because she isn’t with Kay. Auntie Kay is unaware where Auntie Sophie is because none of us want to put a dent in the progress she has made, which is what will happen if she begins to worry about Auntie Sophie.

This is my plea. My Dad and I need some help. You have all so generously offered help when we have needed it, we have declined in the past. Today, that stops. Today, I begin to beg for help. Those of you that live in the Linda have already asked how to help (Pat, Tide is fine, thank you) and I have offered some suggestions. For those of you who are close enough to come sit with either Sophie or Kay, please call my cell phone so we can arrange some times for you. This would help both my Dad and I greatly right now. Friday, we will need someone to stay close to Auntie Sophie as Dad and I will both be at the hospital across town with Kay before she goes into surgery. We will remain there indefinitely. Anything you can do at this point will not only be appreciated and never forgotten, and it will also be a Godsend. (Jane, again, thank you for the home cooked meals, truly a wonderful gesture, thank you).

I don’t want this post to appear that I might be saying we haven’t gotten any help. We have, I can’t say thank you enough on behalf of our family. Some of you have gotten on a plane in the middle of the night and come here to sit with us. Some of you have brought us clean clothes and home cooked meals. Some of you have tended to the house at the Linda, watered plants, babysat for pets. We can’t thank you enough or stress to you how much this means to us. For those of you who want to help and don’t know how . . . this is my plea. Give us some of your time if you are able. If you aren’t able, could you please just pray for us? Pray that Auntie Sophie is able to begin to feel better, pray that Auntie Kay has no more setbacks, that surgery goes on as planned, that she does well during and in the aftermath. Pray that my Dad and I find some strength somewhere. Just pray, please.

Hope

2005-04-15T14:23:00.000-05:00

As I sit here, I am agonizing over what I need to share. I don’t know if I should share with you the tragedies that have occurred in the last nine days or if I just should launch into how grateful we are that those tragedies have not taken someone we love. Should I share where we are from the medical standpoint or should I just tell you how much we have wept in knowing that Kay is alive and still with us? I must admit that my thoughts are running rampant at the moment.

In the past nine days, we have held fast to the hope that Kay could pull out of all of this. We have held fast to the promise that she is strong, that my Mom is watching out for all of us, and that we, as a family, could support each other as we waited throughout some very tense days. Most of all, we have held fast to the hope that all things have a purpose, that there would be meaning to what is going on, that we would be stronger because of it.

Last Friday, Kay was rushed back into surgery to control a massive bleed. This bleed was in a different area than the first bleed and further down than the aneurysm had been. We were told it was an undetected bleed, uncontrollable, and it would take her life. Moments earlier, she had been sitting up, talking, preparing to move out of the Intensive Care Unit. It always strikes me as amazing how fast things can change. One moment you can be talking, laughing even. The next moment, be one step away from death.

She was in surgery for more than six hours, and four of those were spent on a heart bypass machine. Essentially, Kay was medically deceased. We were not sure if she would be able to sustain the strength when it came time for them to end the surgery and pull her from the bypass. We have been told that 99% of patients who go on the bypass will need to have their hearts shocked after they are taken off. Kay showed us all amazing strength in not being one of those people. We have been told that her heart began pumping alone, with no outside help needed.

For the last seven days, she has been on a ventilator while her body had a chance to heal. She has been sedated, lifeless for days. Slowly over the course of the last few days, they have decreased the amount of sedation she was given. This allowed several things to take place. The greatest of these is the fact that we were allowed to see if Kay had continual damage. We knew that there was a very large possibility that she would have some lasting effects of the bleeds. We expected motor damage, possibly paralysis, and many more things. To our amazement, she has shown that she does not have the damage we all expected. One step short of a miracle? You decide.

Yesterday, Kay was taken back into surgery to close the opening on the back of her head. This was left open in the previous surgery due to swelling. While she was in surgery, her chest tube was also removed. At the end of the surgery, the decision was made to take her completely off the vent. Astonishingly, she has done wonderfully without it. She does need some assistance while sleeping, but this is to be expected. She will remain on oxygen as long as she needs it, this could be a lifetime necessity, but we are prepared to handle that.

All throughout the afternoon and evening, she slept off the remainder of the anesthesia. I volunteered to take last night as my night to sit with her so that my dad and Aunt Sophie could manage to get some rest. The ICU has some very strict rules regarding length of visits, etc. However, I am seeing over the course of the past week that they have allowed us to be with Kay more and more. Late last night, one of Kay’s nurses confided in me when she told me that they were calling Kay the "smiling miracle." The nursing staff has been wonderful and they have all fallen in love with Kay. They can see, just as we can, how much of a fighter she is. As I sat with her last night, I watched her breathe while on the aid of a bi-pap machine. Suddenly, I saw her eyes open and I must say that I began to cry.

We have all been told to expect her to have some memory loss, some confusion, etc. This will go away, we have been told. I expected it . . . but had no reason to. I asked her if she knew who I was. A nod. I asked her if she was in pain. No nod. I asked her if she was cold. A nod. After I tucked another blanket around her, I reached up to tuck it around her torso. As I bent over her, I felt her hand on my face. It was the most wonderful feeling, one that made the tears fall that much faster. She quickly fell back asleep and I sat in the silence, crying.

In those few moments, she gave me back hope.

Today, we have received the results of a bone marrow biopsy done earlier this week. The results were not far off from what we expected. Kay has not had chemo in 23 days. Her surgery was scheduled for this past week, chemo should have started shortly after. Right now, she is too weak to go through another surgery. For now, a plan has been set into place. As I type this, Kay is getting a steady drip of Taxol. She has been given Ativan and Zofran beforehand and will be given them as needed throughout the next few days. The Taxol is only one of three chemotherapy agents that she would normally be receiving. Although the Taxol is one of the more severe agents, it is also one of the more effective agents. A smaller dose can be given and be much more aggressive than some of the others.

She was alert enough this morning and seemed to understand what was taking place. We did give her the option to decline it, but begged her not to make that choice. She didn’t and Taxol began after a round of pre-medications were given. Due to the combination of medications, she is sleeping once more. However, it is not sedation and we are grateful for that.

Over the course of the next few days, several things will happen. One of the most important for us is that Kay’s vocal chords will begin to return to their normal size. Right now, they are very swollen due to some effects of the days on the ventilator. As the swelling goes down, her ability to speak will return, something we are all looking forward to! As the next few days unfold, we will also be able to tell if there any other residual effects of the bleeds or the surgery. The medications she is being given in adjunct to the chemotherapy makes it difficult to gauge how much, if any, damage is actually present. As these wear off, the ability to gauge will become clearer.

Also happening during the course of the next few days is something that is going to be harder for us to deal with. Although Kay is weak right now, we also have to remember that she has a cancer that is going to ravage her body if we don’t take some action. Decisions will be made this weekend that won’t be easy to make, I am sure of this. Please pray that we are guided to what is best for Kay, not for us.

We would like to thank each of you individually, but we honestly are so blessed that it is impossible. On behalf of our family, I would like to express our appreciation for a few special people.

Tessa and Denver, you already know how much we love and we all want to say thank you for being here so much during the past few weeks. You both have dropped everything to come hold our hands and we are forever indebted to you.

Andy and Barb, we know how much you care for Kay and for all of us. I speak for each of us when I say we love you both. Thank you for taking care of so much without even being asked. We are grateful for your support.

Mike, Rob, Andrew: Words cannot express what it means to our family that you have done this. It touches me to know how many have pulled together this event. Thank you so much for all of your help in making the arrangements. I have no way of making it clear how much we appreciate your presence in our circle of loved ones.

Donna, I have so many words for you that I had hoped to share with you this weekend. For now, I will save most of them and share them with you soon. For the time being, please know we all love you and we count ourselves blessed to consider you family. Your prayers, thoughts, compassion, and love for all of us has always been (and always will be) appreciated.

Jane, Ellie, Rush: You have no idea what it meant to me to look up and see you all standing there. Thank you for coming, for holding us up, for making sure we had the chance to tend to some things outside of the hospital. I know that I speak on behalf of the entire ICU staff when I say thank you for dinner. Your thoughtfulness of bringing a home cooked meal to us was astounding. (Jane, my Dad says to make sure I say thank you....he said there was nothing better than your banana pudding! The rest of us wouldn’t know, HE ATE IT ALL!)

Most of all, for those of you in Linda, thank you so much. I have said it before, but you can’t know how much it means to us that you are tending to the mundane things for us right now. We can rest easily knowing that everything there is taken care of, thank you all.

For everyone else that I have not mentioned, there are so many of you that have touched us in one way or the other. Please know it hasn’t gone unnoticed and we love you for just being there, for constantly praying, for always supporting us.

I had promised myself I wouldn’t cry, but here I am. During the past 16 days, we have been on a constant roller coaster ride, not knowing if it would ever stop. Right now, it hasn’t stopped, but it has certainly slowed down.

For that, we are grateful.

For all of you, we are thankful.

We love each of you.

Whirlwind

2005-04-06T13:50:00.000-05:00

I have been asked to write an entry that summarizes the past few days for our family. As I sit here in what was once my sister’s favorite room in this house, I am reminded that nothing is how it should be. This house should be filled with laughter and love. There should be the smell of fresh baked cookies floating up the stairs. My daughter should be outside with her Aunt and her Grandfather, tossing a ball back and forth. Nothing is how it should be.

My sisters are gone. My mother is gone. My father feels like he is losing his family. My Aunt Sophie is trying to figure out how to care for the love of her life. My husband is a thousand of miles away, once again caring for our daughter by himself. Kay lays in the intensive care unit 200 miles away, struggling for her life. Nothing is how it should be.

Since Saturday morning, I have remained in close proximity to Kay’s side, to help support my family as we prepared to say goodbye to yet another person we all love. When I boarded the plane on Friday morning, I had no idea if I would see her alive again. She was dangerously close to death and there was no one on her care team that believed she would make it through the night, much less make it until today.

Kay has shocked us all by making it past those first few hours, making it through not one, but two major brain surgeries in the past four days, and making some serious strides in proving she can fight more than any of us ever thought she could. While she is still in very serious condition, she is stable. That is a true miracle.

While none of us want to release the breath we are collectively holding, we all know how fast things can change. We, as a family, would like to thank you for your prayers, well wishes, comfort, and support. So many of you have e-mailed, called, visited, or stayed on the sidelines and helped us during this time, we are unable to thank you each individually. Please know that your kindness is appreciated, noted, and it means more to us than we can tell you.

Many of you have asked how you can help right now. First and foremost, do not stop praying or thinking good thoughts. Kay is not out of the woods, so to speak. She has many things going on right now and while it looks like we have escaped a brush with death, we all know that her body is in turmoil right now. It is becoming increasingly harder for the medical staff to pinpoint what is the biggest concern right now. Please pray that they are able to help her in every way possible.

For those of you that live in the Linda or the Joplin area, thank you so much! I didn’t know what to expect when I drove here today, I am amazed by your generosity and compassion for our family. To each of you who have taken it upon yourselves to do so many things, you don’t know what a relief it is to not worry about the mundane things of life right now. From the bottom of my heart, I speak for our entire family when I say thank you.

I will be returning to the city in a few hours. For now, I think I will sit here in the silence, remember what once was, what should be, and now, what is.

Missouri

2005-04-01T09:49:00.000-06:00

They say it will be nothing short of a miracle if she makes it out of surgery alive.

They say it has been there for years, waiting for the right moment to attack.

They say she is in critical and not stable condition.

They say it could explode at any moment and they can’t stop it.

They say she could bleed to death during surgery.

They say any sudden movement could cause it to burst.

They say she needs prayers and a miracle to survive.

They say it is an anomaly.

They say it is fatal 99% of the time.

They say they don’t expect this to be the exception.

They say she is not conscious.

They say this is so she can remain calm and not become agitated.

They say she won’t feel it when it does burst.

They say she won’t feel the pain and her death will be near instant.

They say she isn’t aware how close she is to death.

They say she may be gone before I get to say goodbye.

They say I need to come, come now.

They say they need me now.

They say please pray.

I’m going to Missouri.

Salvation

2005-03-25T00:14:00.000-06:00

Once you have held someone as they die, your life is never the same. It can’t be the same again, no matter how hard you try. I have been with more than two people as they passed, but being with Sara and Mom . . . has forever changed me. Images are in my head that I just can’t shake, I can still hear the screams, I can still remember watching Sara’s body grow limp and vibrantly remember what I felt as Mom took her last breath. It is something I just can’t shake. In the past few weeks, I have tried my best to keep myself busy on this side of the little pond. It has not been an easy task.

I have gone back to teaching temporarily. One class, once per week, filled with eight brilliant minds. A small, intimate class filled with students that I have had in the past. They are well aware of all that has happened in the past few years. They are growing accustomed to my emotion filled outbursts, my stream of never-ending tears, and my lack of interest in our syllabus. I owe them much more than this, but I don’t have it to give right now.

My Aunt Kay is having chemo today. This is after several days being delayed due to her counts. We were all starting to become concerned as to how her body was holding up with no chemo. She needed the chemo, but the counts had to be at minimal level first. Either way, she couldn’t win. They have added a new agent to her treatment plan, Cytoxan. From what I understand from my Dad, it has made her violently ill. My heart goes out to her, she is so weak already, sometimes I must question what the hell is going on with this life. She is having surgery on April 13th in Tulsa. At that time, they will be doing a liver biopsy, a bone marrow biopsy, a lung biopsy as well as the scheduled double radical mastectomy. She will resume chemo as soon as she is given the clearance to do so. Radiation therapy will be done at some point, we are unsure as to if it will be during or after chemo has finished. At her request, I will remain here in Germany until after her surgery.

My Mom’s memorial service is set for April 23rd in the Boston area (Cambridge). Kay is insisting that we keep this date, even with her surgery. I am not sure how this will turn out, but we are still planning on it. Between my Aunts and my Dad, we are all trying to make this day a wonderful tribute to my Mother. She deserves so much more than we can ever give her, this day is our gift back to her. I know it is our wish to meet as many of you as possible, I will be posting directions and details as they are confirmed and we would love for you to join us as we pay tribute to my Mom. Please bring any photos that you would like to share, any special collections of writing, and/or any music that has special meaning to the memory of my Mom.

We are quickly approaching Sara’s birthday. It is a day that is hard for all of us, but especially for me as I thought Sara was mine. I honestly believed my parents got her just for me. She changed me, changed my outlook, changed whom I was destined to become. She taught me so much in her 24 years with us, I don’t know if I could ever do her justice by trying to explain it. For those of you that knew Sara before she became ill, you know what I am speaking of when I say her S-P-A-R-K-L-E (Tessa, done just for you). She touched anyone she came into contact with. She was identical to my Mom.

Lately, I have been trying to immerse myself into music. Music has always been a part of our family, as I have stated many times before, my Mom LOVED music. Her music taste was nothing but eccelectic. I am trying to find that passion again. In recent days, I have found a song that has touched me. In so many ways, it fits right where I am at this very moment. In other ways, it gives me hope of where I hope to be someday.

Orange Sky
By Alexi Murdoch

Well I had a dream
I stood beneath an orange sky
Yes I had a dream
I stood beneath an orange sky
With my brother standing by
With my brother standing by
I said Brother, you know you know
It’s a long road we’ve been walking on
Brother you know it is you know it is
Such a long road we’ve been walking on

And I had a dream
I stood beneath an orange sky
With my sister standing by
With my sister standing by
I said Sister, here is what I know now
Here is what I know now
Goes like this..
In your love, my salvation lies
In your love, my salvation lies
In your love, my salvation lies
In your love, in your love, in your love

But sister you know I’m so weary
And you know sister
My hearts been broken
Sometimes, sometimes
My mind is too strong to carry on

Too strong to carry on
When I am alone
When I’ve thrown off the weight of this crazy stone
When I've lost all care for the things I own
That's when I miss you, that's when I miss you, that's when I miss you
You who are my home
You who are my home
And here is what I know now
Here is what I know now

Goes like this..
In your love, my salvation lies
In your love, my salvation lies
In your love, my salvation lies
In your love, my salvation lies
In your love, my salvation lies
In your love, my salvation lies
In your love, my salvation lies
In your love, in your love, in your love

Well I had a dream
I stood beneath an orange sky
Yes I had a dream
I stood beneath an orange sky

Frustrated

2005-03-10T02:34:00.000-06:00

Today finds me weeping. I have sent Emily on an overnight play date and my husband is out of the area for an academic conference. I am alone which right now is a very good thing. The tears keep falling and I don’t think I am much help to anyone today.

I have spent the evening responding to e-mails, trying to get my e-mail to work (THANK YOU AUNT KAY), yelling at the computer, and trying to stop the ever present tears. While I am no computer genius, I can usually figure out my own problems. Today I had to call my Aunt Kay and beg for her help. We still don’t know what is wrong, but by forwarding my e-mail to her by instant messenger and her logging into my e-mail acct., I was able to send all but one of the e-mail letters that I needed to. Frustrating day, to say the least.

It doesn’t help matters that all I want is my Mom today. My heart is crying for her today. I just want to feel her arms around me, hear her words whisper in my head "It’s going to be okay, Punkin," and I want to feel her heart beat as my head rests on her chest. I miss her. I need her. I want to be with her. She would make all of this right. She would take care of Aunt Kay. She would assure me that we can make it thru all of this as a family. She would hold me tight and make sure I knew she wasn’t going to ever let me go.

I need my Mom.

Vanessa

2005-03-06T05:37:00.000-06:00

Mom,

I know you won’t ever get this letter. I know that Heaven doesn’t have postal service, UPS, or FedEx. I know that there is a chance you already know what is on my heart, but I need to be heard. I can’t call you anymore . . . but I don’t think my brain knows this because moments ago I picked up the phone to call you.

Lately, two people in your life have been on my mind. Well, three actually . . . but my thoughts revolve basically around two of them. Sara died on June 15, 2003, a day none of us will ever forget. It was Father’s Day and unusually cold that morning. Remember what Dad said? "An Angel took flight in the cold chill of the dark morning." Several mornings have been like that lately, brisk and damp. They bring back many reminders of that day.

After Sara died, we all fell apart, but you most of all. Your baby was gone. I didn’t truly understand your pain until Emily came along and the thought of losing her makes my heartache. I can’t and don’t want to imagine ever having to say goodbye to Emily, my baby. My heart hurts thinking of your pain, the pain you couldn’t share with us.

You took your emotions inward. Your pain was clear to all of us but you shut us out. We couldn’t help you, and you knew this. We couldn’t even help ourselves. How could we have been any help to you? You knew we wouldn’t ever understand. You stopped talking. Dad said the silence was worse than anything. He was scared for you, Mom. Did you know that? Did you know how scared we all were that we would lose you, too?

You found an online source to help your grief. We were elated that there was someone out there that you would turn to, someone you could trust with your pain. You spent hours a day chatting with others who understood the depths of your anger, your grief, your heartbreak. All that time we thought it was helping you. It wasn’t until after you died that we learned the truth. You spent countless hours in that chat room listening to others, guiding them in their own pain. You didn’t seek help. You gently held those who were both old and new in their grief. You saved those people. In turn, they saved you without ever knowing it.

You were loved by everyone in there, I am told. However, you handpicked the people who needed you the most. You took those people into your heart, and you gave them love and space. You allowed them to trust you, to find faith in you, to find safety in your love. You had this little group of people who you mothered and took care of. I asked you once what was so special about those selected people . . . why them? You told me they each needed something that you could give them.

That brings me to the first person on my heart today, Vanessa. Vanessa is on my mind based on a few things, but mainly because of what I found this morning. Mom, before you died, we all knew what you wanted each of us to have. You made sure that we all knew what personal item you wanted us each to have. At the time, I had no idea why you wanted me to have your prayer books. I knew that I had always remembered you keeping a prayer book, but never knew how many you have made thru the years. They are so much different from your journals. These are more of your soul, I guess. Maybe you wanted me to see what it meant to have a pure heart. Maybe you had a different reason. I am slowly getting thru them. I admit I am going thru them sporadically. Perhaps I should have gone thru them in chronological order. However, I keep finding things that make me stop and think. Just like this morning when I found a picture of the one you called "winged one." It was stuck in your prayer book with a quote and a prayer for her. My thoughts began to wonder about this girl, the one you loved so much.

You spoke highly of Vanessa. You called her "your winged one." I didn’t understand that, but you told me it was something she understood. She wasn’t that much older than Sara was, I don’t think. You told me that she had lost her mother just a few weeks before we lost Sara, but that she didn’t need a new mom . . . she just needed love. Love her? That you did! How many times did I call to talk and instead get told "Vanessa is having some rough patches right now, she needs me?" I won’t lie, Mom. It hurt then and I didn’t understand it. I didn’t understand how you could love a complete stranger. I admit, I may have even been a bit jealous of this stranger.

Now, knowing all I do? Knowing what is like to lose your mother? I get it now, Mom. I understand and I take back every bad thing I ever thought about your relationship with her. If you thought Vanessa needed you? She did. Case closed. She needed you then like I need you now.

Your friendship with her ended slowly. You spoke to me about the pain of losing her, you said it was almost like losing Sara. You said it was best for her, for Vanessa. You said you needed to release her from the pain and release her back to living again. I wondered what you meant. I wondered what type of person she was. I wondered how she was coping with your choices.

Now, I wonder how she is doing. I wonder if she even knows that you are gone. I have her phone number. It crosses my mind to call her, but what would I say? How would I ever tell her how much she meant to you, Mom? How could I ever make it clear how much you loved her? Would she even understand what I was trying to say? That I was trying to say thank you for being there when you needed her most? Would she know as a daughter herself how much I appreciate all she gave to you during your relationship? Would she? I hope she would. If she is anything like you said she is? I believe she would understand this daughter’s heart.

Please

2005-03-04T18:56:00.000-06:00

I do not have permission to be asking this, so I will not be releasing any information at this time. However, I do have a favor to ask of all you right now. Strangers, friends, family, foe...I am begging you to send good thoughts, good karma, good prayers, whatever you have, please send it to my Aunt Kay and my Aunt Sophie. I don't care how you do it or what higher power you do or do not believe in, just please help them out right now in whatever manner you can.

I will be posting more in segments as I can, I just needed to feel like I am doing something. Asking you all for help is the only thing I know to do right now. Please, I am begging on this one.

Vertigo

2005-02-27T05:43:00.000-06:00

Short note,

I am with my husband and daughter. Kay was admitted on the 21st for pre-meds and her chemotherapy treatment began on 02/22. She did well until Thursday evening and then she was taken to St. Frances for further treatment. When I spoke with her last night, she was not sounding so strong, but I am told she is doing well. I have no plans to return to the States until her surgery date is closer.

A better detailed entry will follow in a few days. Until that point, thank you all for your concern, love, and prayers.

Exhausted

2005-02-13T14:37:00.000-06:00

Where do I begin?

I am sitting here crying as I type this, mainly because I can’t hold back the tears anymore. I have been forcing myself to not cry all week long, today the dam broke and the tears haven’t stopped. I miss my husband, my daughter, my job, my life. I am worried about Kay (worried is an understatement, I am scared), I am tired, and I am trying to keep everyone else together. I just don’t have it in me today to hold my tears back.

Since I last posted, Kay has been hospitalized twice. She is home once again and is just as weak as she was when I last posted. I don’t see any improvement, but then again, I don’t see that she is any worse than she was a week ago. She is now to a point where she is sleeping more than she is awake. They tell us that this will change as her body begins to respond to the daily shots of Neupogen and the three weekly shots of Epogen. She has received three transfusions of red blood and five platelet infusions since this all began. None of those have had lasting effects as we hoped. She was able to feel "alive again" (her words) for a matter of hours and then it was back to her being exhausted.

She walks to another room and then has to sleep for hours to regain the energy she lost. She can’t do this unassisted. She is just still too weak. This frustrates her and makes her even more depressed. We don’t know what to do, except push her harder to do those things like walking, so that she regains the strength. We will deal with the emotional aftermath as it comes, I guess.
We are going to Tulsa, Oklahoma tomorrow to prepare to meet with a surgeon on Tuesday. There are many qualified surgeons in this local area, but her doctor has recommended two surgeons who only operate on cases like Kay’s (high risk, family history, etc.). We will meet with the first of two and hear what he has to say.

Due to Kay’s blood counts and her current condition, her chemotherapy schedule is on hold. We will wait to hear what the surgeon says before making the next choice (surgery vs. chemo first, or chemo vs. surgery first). She should be having chemotherapy on the 18th, but I don’t see that happening. Her oncologist doesn’t want to veer off track for too long, but I am not sure what will happen.

As soon as we know for certain when her surgery is, I am going back to Germany. I need to be with my husband. Emily will fly back with me for the time being. I will return before Kay’s surgery. This will only happen if the surgeon postpones her surgery. If not, I will remain here until after her surgery and then I will go home for a few weeks. I need to be with Alex and Emily. Emily is talking so much these days, and it breaks my heart to hear her on the phone. I want to hold her, remind her that I am her mother. She is in good hands right now, but she needs her mother.

My Dad is holding up well. He stays busy most of the time, which is good for him. He is in love with the new puppy, Mollie. She seems to be good for everyone, including Kay. Mom would have loved her. She is so soft and playful.

My Aunt Sophie is holding up like a trooper. She had a whirlwind trip to Hong Kong, came home, stayed at the hospital with Kay for four days, and the night Kay came home, Sophie got the flu. She was isolated at another house (Kay’s counts are too low to risk getting the flu) and has now returned back to our house to jump right back into caring for Kay. So much for the flu shot, it obviously has done us no good!

Not a day goes by that Mom isn’t in my thoughts or her name uttered from my lips. I constantly find myself thinking of something I need to ask her, only to realize I don’t have that ability anymore. My heart aches for her, my body craves one of her massive hugs, my ears long to hear her laugh once more. She had the best laugh you have ever heard. No matter where you were, if you heard her laugh, you couldn’t help but smile and usually laugh along with her.

My Mom loved music and while I love it as well, I do not have the passion for it that she did. However, this song seems to sum up everything I am thinking today.

"One Moment More"

by Mindy Smith

Hold me

Even though I know you are leaving

And show me

All the reasons you would stay

It's just enough to feel your breath on mine

To warm my soul and ease my mind

You've go to hold me and show me love

Give me

Just one part of you to cling to

And keep meEverywhere you are

It's just enough to steal my heart and run

And fade out with the falling sun

Oh, please don't go

Let me have you just one moment more

Oh, all I need

All I want is just one moment more

You've got to hold me and keep me

Tell me that someday you'll be returning

And maybe

Maybe I'll believe.

It's just enough to see a shooting star

To know you're never really far

It's just enough to see a shooting star

To know you're never really gone

Oh, please don't go

Let me have you just one moment more

Oh, all I need

All I want is just one moment more

Oh, please don't go

Let me have you just one moment more

Oh, all I need

All I want is just one moment more

You've got to hold me and maybe I'll believe

Maybe I am just feeling sorry for myself, but today I need my Mom.

Help

2005-02-06T16:21:00.000-06:00

I am coming to you this afternoon to beg for help. The help is not for me (but if you have some to spare, I could use it), but instead is for my Aunt Kay. As most of you are aware, we came very close to losing her just over a week ago. While she is going to be okay, she isn’t right now.

I have never seen her like this and it scares me. Her physical needs are not something you can help with, I know. With that said, I will still tell you what is going on, maybe you can offer help in some sort of area. She came home on Thursday evening still needing constant care. She is gaining strength daily, but it isn’t in areas she would like it to be in. She is not requiring constant care now, just assistance to do pretty much anything that takes strength.

Her pulmonary functions are down. Basically she is having some problems catching her breath after exerting her energy. This means she is just trying to rest and for that, we are so glad. She has already started pulmonary rehabilitation and this will continue until her lungs are back to normal. There is no end in sight as to how long this will take. She came home on a plethora of medications to keep her body afloat. Keeping these organized and on the right schedule is taking everything I have right now.

Her body is weak, but it will recover. Her inner fight is what is frightening to me. I can’t see it. She won’t talk to me, she cries and she sleeps. She scares me, her lack of caring concerns me. I am sure you are wondering how you can help . . . I don’t know, but I am open to anything right now. Please help. I can’t lose her.

As far as my previous post is concerned, I will touch upon that subject later. Right now, I just need to help Kay, she needs us.

Protecting

2005-02-04T00:05:00.000-06:00

My post this evening will be jumbled. It may be a post that tells you of the hell our family has endured this week. It may be a post that lets you hear how joyful we are that we made it thru the week, alive and together. This post may just be a venting of all my anger that I have right now. This post may just be one that tells you that while I am so anger I could scream, I am also weeping. My words may be words that make you sit back and ponder life and all it consists of. My words may make you question everything you know to be to true.

However, I know what my words will end up being. This will be a post that results in several of you asking yourselves if I am talking about you. You will know if I am. I hope you know how angry I am that you have done this. How you could do this to our family, after all you know that has gone on here? How could you walk away now? How could you just abandon me, all of us, convinced that your stupid little problems were so damn earthshattering that you didn’t take into consideration that you were NOT the most important issue at hand? How could you do this? Maybe I don’t want to know how. I am afraid of knowing how you could do this, what type of cold-hearted person this would take to do something like this. Instead, I want to know why.

Why did you do this? I demand answers. After all of this, I need answers. You owe me that much. My family has bent over backward for you and your petty wants and you did this. Why? Just tell me why before you leave. I need to know why. I need to know why you thought this would be okay. Why did you just think that we would just hold our heads high and let you do this. Why? Why did you let me down this way? Why did you choose to give me comfort, only to rip it away when I needed it the most? When I asked, you turned a cold ear. Why did you offer concern and care to my family and then revoke it without even a thought? Why did you do this to Kay? Do you know how much she needed support this week? Was it too much for you? Why?

This week has been hell, a week of pure hell. Then again, maybe the straight run of hell hasn’t ended in months. Who was I kidding thinking that the seas were calm for the moment? This past Friday, Kay had her second chemotherapy treatment. She declined to stay an inpatient and asked to come home. I obliged (although I did argue and try to talk to her out of it numerous times) and conditions were set into place. Saturday afternoon she began to show signs of a fever, within hours she was being taken by ambulance to the hospital where she was placed in Intensive Care for the night.

When my Mom died, I promised myself I would never be responsible for another person’s right to decline treatment. That choice should be left each person, I knew I would never again control that, I didn’t want to. However, Saturday night I was asked what to do if Kay’s heart stopped beating. Did I want her wishes followed? Did I want to use my authority as her temporary power of attorney and avoid her wishes, ask them to save her life? It was not a choice that I wanted to be making and I prayed I wouldn’t need to press my authority.

Kay gave cause for several small heart attacks this past week, but finally she has pulled through it and was released from the hospital late this evening. She is weak and very tired. It will take time for her body to recover from this, what was essentially toxic poisoning from her last dose of chemotherapy. She is not up for anything after coming home this afternoon. Seeing her this way, she is too much of a reminder of my Mom.

Maybe that is why this, what has happened this week to our family is so hard. I remember how hard this was to stand by and see Mom go thru this and not be able to help at all. This time, this time I can help. I can help Kay by not letting her get hurt by you. I can help her by stepping in and letting you know now that this was not acceptable. She doesn’t deserve this and either do I. You know this and you know this path. I know you do, how can you not? My anger is back once again, and I can’t let you do this to my family. I will protect us at all cost. I will do it for Kay. I will do it for us.

I will do it for my Mom.

Automatic

2005-01-26T08:59:00.000-06:00

A new post is coming, I promise. Things here are hectic to say the least. For those of you that keep checking in on us (Tessa, stop hinting. I’m doing it!) and for those of you who have e-mailed either Kay or myself, we are both trying to respond as we can. Thank you in advance for the understanding.

If you have called the house and I have yet to return your call, please just know that all the messages have been received and I’m working my way through them as quickly as I can. Again, thank you for understanding.

For those of you that are here to check on Kay, she could use some good thoughts and prayers if you are the praying type. To say that she is having a rough go of it would be a major understatement. Her treatment is going as planned, her next chemotherapy is scheduled for Friday (28th). The effects of the first treatment hit her harder than she expected and she is still dealing with the aftermath from the treatment three weeks ago.

Soph is back in Hong Kong for a few days to settle up a few things. This was the best time for her to go as she wanted to be here in time for the aftermath of Kay’s next treatment. She has been gone over a week now, and I speak for Kay and myself when I say that we miss her and pray she comes back soon.

My Dad has been in Boston for the past week. I was to go with him, but instead stayed with Kay so Soph could leave. I am glad that we made that choice rather than leaving Kay alone as it snowed (okay, the correct term would be that a blizzard hit) in Boston and left my Dad stranded for a few days. He is back home as of last night and is leaving today to join some friends on what is becoming an annual boy’s week. We will miss him and we hope that he has a relaxing time in which he is able to put the focus back on himself for even a few days.

How am I? I am exhausted. I am too tired to even think (which right now is a blessing) and am running purely on automatic. Kay is most important right now, and everything else seems minimal now. That doesn’t mean that moments don’t hit that tear me apart. They do, trust me. It doesn’t mean that every moment of each day doesn’t find me thinking of my Mom and begging for her guidance. It doesn’t mean that I am not grieving. I am doing all of the above and more . . . just right now, my primary focus is Kay’s well-being.

My husband is back in Germany. I can’t wait to see him again. Emily is with her grandparents in Ohio. I speak with them both each day and am looking forward to holding them both in arms again. When it’s time, it will happen. Right now, I am where I need to be.

A full post is coming, I promise it is. Thank you again for understanding and caring so much for all of us.

Questions

2005-01-10T23:58:00.000-06:00

Thank you all for the kind comments, e-mail messages, and phone calls. It is comforting to know how many of you are still checking in on our family and still saying prayers and wishing good thoughts.

A few of you have privately e-mailed me to ask specific questions about Kay’s course of treatment, her disease, and prognosis. After speaking with her about it, I have decided to post a few links that you are more than welcome to check out at your own convenience.

The first link is concerning her cancer cell type: Invasive Ductal Carcinoma (IDC) .

The second explains how they have and how they will stage her disease: Stages of IDC.

The third explains her treatment plan: Systemic Chemotherapy.

The fourth shows exactly what a Port-A-Cath is and how it works: Ports for Chemotherapy.

The fifth talks about one of her chemotherapy agents: Adriamycin.

The sixth is about the second agent that makes up her treatment: Taxol.

If anyone has any other questions, feel free to e-mail them or leave them in the comments.

Kay’s surgery for the port placement and a more invasive lymph node(s) biopsy went well. She spent some extra time in the recovery room and then we went with her to sit while she had entire body scans (PET) . She was admitted that evening to pump her body full of fluids. The first chemotherapy treatment was started on Friday. She slept during the entire treatment, most of the night, and woke up for a short time Saturday morning only to come home and go back to sleep for the major part of the day.

She has slept a lot (this is good) and has had some trouble with severe nausea since her release on Saturday. We are trying to juggle anti-emetics enough to help control this. So far, we haven’t been successful. She is refusing to drink until we get it straight and we are working on finding the correct dose as we can’t let her get dehydrated right now.

The rest of us . . . well, we are hanging in here. It’s bringing up some memories that we were not prepared to face and had hopes of never facing again, but we are trying to cope and help Kay right now. She is most important and we are doing everything we can to hold her up as she conquers this.

Thank you for your continued thoughts, prayers, and well wishes.

Thrown

2005-01-05T20:58:00.000-06:00

This evening my family and I are walking on known and previously trodden ground. Words are not being spoken regularly, but the tears can be seen frequently flowing. In a few short hours, we will step into a world that we have tried our best to outrun. We are being thrown into a world that has shattered our lives and we have no choice in the matter.

At 1:30 tomorrow afternoon, my Aunt Kay will enter the surgical unit at our local hospital for a Port-A-Cath to be placed within her chest wall. When she gets out of the recovery area, we will take her to the radiology unit and sit with her for complete body scans. We are once again being thrown back into the cancer world.

On December 21st, Kay was diagnosed with Invasive Ductal Carcinoma (IDC). This is a very treatable breast cancer and one of the more common cell forms. She will be undergoing a fairly aggressive form of chemotherapy, a double cocktail of Adriamycin and Taxol (AT) beginning Friday. She will also have a double modified radical mastectomy during the course of her chemotherapy treatment plan (most likely after the second treatment). When her chemotherapy protocol is completed to the satisfaction of her oncologist, she will undergo four weeks of harsh radiation to rid any remaining cancerous cells.

Her treatment plan is very aggressive. I have said this. It is not because her cell type demands it, it is aggressive for preventive measures. She, like us, doesn’t want to take any chances, just in case. Kay’s oncologist is not the same doctor who treated Mom, but she is familiar with the case, nonetheless. She also thinks aggressively treating it is best, given the family history. We all feel slightly relieved at the harshness of the treatment plan, not because we want Kay to go through the same hell that Mom did, completely the opposite, in fact. We want her to have the best odds at beating this and we all feel like she is being given that with the aggressive treatment plans.

The hardest thing for us as a family to grasp is that this is NOT what my mother had. This cell type that Kay has, it is entirely different in comparison to Mom’s cell type. Mom’s cancer was unresponsive to chemotherapy, but Kay’s isn’t. Mom’s cell type invaded her entire organ system, Kay’s has not and will not. Mom’s cell type was fatal and her prognosis at the time of diagnosis was bleak. Kay’s cell type has an excellent prognosis of a complete cure with proper treatment.

My Aunt Kay is lucky. They keep telling us this. It has been diagnosed before it invades her body. It is highly treatable with the proper course of treatment. Her treatment plan has an anticipated end, even before it begins. My mother was not this lucky, but we are trying hard to set aside our anger and focus only upon Kay’s mental health and her physical well being.

As I write this, my Aunt Sophie is bustling around the house packing for Kay’s hospital stay. They have shown nothing but support for each other in the entire time Sophie has been in our lives, but the past few days, she has been the strong anchor for all of us. She continually reminds us that this is not going the beginning of the end, and this will not capture my Aunt Kay. She reminds us of lessons we learned via my Mom, she reminds us of the everlasting love we have for each other, and she reminds us to hold on . . . to whatever we can right now.

There have been many tears shed by us, and many more shed by Kay. Please hold her with good thoughts and/or prayers as she enters this stage of her life. We are trying to hold onto each other right now, do what is best for Kay, keep reminding her that what happened to my Mom is NOT going to happen to her . . . we just won’t let it.

Valley

2005-01-01T03:29:00.000-06:00

Each year as I grew up and began a family of my own, I remember my mom writing a New Year’s Eve letter. It was always a letter that told of what she hoped for us in the upcoming year, what she loved about the past year, and most of all, the lessons she had learned during the previous 365 days. This year, I would like to take on her tradition, one I would like to continue throughout Emily’s life.

Tonight as we say a good-bye to 2004 and welcome 2005 into our lives, I cannot help but recall all that has happened this year. We have been taken as a family to new heights of joy and have reached deeper lows than we have ever seen before. To quote my mother "the mountaintops were stunningly beautiful, but I learned the most while walking in the valleys."

We stood united as a family as we helped my mother fight for her life through countless treatments and procedures. We remembered my baby sister as we marked the first full year she has been gone. We mourned along with the rest of the nation the remembrance of 9/11 which took the life of my eldest sister and thousands of other innocent people. We said good-bye to the matriarch of our family, our strength to do this came from her. We made choices we didn’t want to be making as we released her to the heavens. We once again joined together as a family to hold each other as my aunt was faced with horrible choices. We faced the holidays with broken hearts, shattered joy, and a lack of peace. On the last day of 2004, we said good-bye to Sara’s beloved dog, Lucky.

There were good memories. We learned to love each other stronger, hold each other tighter, and lean on each other more. We listened to my mother as she showed us to face life and death with wisdom, beauty, and grace. We spoke with our hearts, poured out our souls, and held onto each precious moment as tightly as we could. We laughed as Mom left us with funny remarks, embraced each other as we cried with her, and held her hand as she went to join her angels. We learned much about ourselves by watching her journey. She taught us to be brave in the face of fear, live each day as if it is your last, and to truly love life.

As a mother, there were certain special memories for me. Emily’s first tooth, the first time Emily used that first tooth on my finger, Emily’s first word, her first steps, and her first trip to the States. I will always hold close to my heart the last image I have of Emily and her grandmother. They were laying side by side, asleep and content, together. Each had a smile upon her face and it is an image that I have made sure to brand upon my memory so as not to forget it.

There were many other memories made in 2004, both devastating and wonderful memories. I will treasure 2004 as the best and the worst year of my life. I learned how strong I am as well as how weak I truly am. I learned that my heart can remain broken and I can still find joy in other parts of my life. I learned that God is always there, even when I am angry and walk away. The mountaintops were beautiful, Mom . . . but you are right. I have learned more about life by standing in the valley.

Karma

2004-12-22T15:55:00.000-06:00

I came here today to give details on my mother’s upcoming memorial service. Instead, I think it is best if I fill you in on a few other things going on in our family. We (my father and I) flew back into Tulsa yesterday morning, made it back to Joplin, and realized that once again, our lives will be turned upside down. I do not say this for pity. I say this so that you have some idea where our minds and our hearts are tonight.

I do not have permission to divulge information, but please, if you are sending up good karma for our family, hold my Aunt Kay in your close thoughts. She could use the karma, prayers, and thoughts right now. I will say this...Kay, I know you sometimes come here and I just want to say that I love you and that I promise to be with you, every step. I do owe you this much, you have always been here for us, no matter what.

My husband, Alex, will be flying in on Friday. I miss him dearly and will be so glad to see him, to be with him on this holiday. Our daughter Emily will be brought back to us on Friday as well. I have spoken with her grandparents several times, she is having a wonderful time and is being spoiled. Although she was born last November, she wasn’t exposed to Santa in the manner that she has been this year. Now, I hear her on the phone telling me about "hana." I have to smile and be very grateful that she is with her grandparents right now, they can show her what Christmas really means, joy and peace are not my strongest points right now.

Suddenly our first Christmas without Mom and our second without Sara seems, well, it seems we can handle this. We are all going to be together, we will make it, somehow. We have the focus being placed on Emily, we decided her never-ending happiness would carry us thru. She doesn’t know pain or sadness, she doesn’t understand why Mom’s tears keep falling. She doesn’t understand why we all can’t be as happy as she is. We are trying to find the same joy that she has.

As I sit here and type this, I can hear one of my Mom’s favorite Christmas songs playing in the background:

"...A thrill of hope the weary world rejoices
For yonder breaks a new and glorious morn
Fall on your knees
Oh hear the angel’s voices
Oh night divine..."

How I have to think, is she hearing the Angel’s voices right now or is she one of those Angels? Is she watching us and smiling on us as we get up to face another day without her and struggle to find our way based on what she taught us? Is she rejoicing as we take the gifts of love and strength that she left us with and as we learn how to use them again? Will she be with us on Saturday as we allow Emily to open her gifts and enjoy the season?

We will be attending Christmas Eve services as a family and then my husband and I will attend Christmas midnight Mass. My mother loved Christmas Eve services but chose last year to let the holiday slip by her unnoticed. I do understand that, now. Funny how many things I didn’t understand then, but they all seem so crystal clear to me now. This is Emily’s first real Christmas, I want it to be special for her. I want her to be exposed to every joyful thing that my mother, her grandmother, adored about this season. I want her to be touched by the kindness of strangers, remember the joy behind the holiday, and to remember fondly those who have gone before her to prepare the way. She is too young to grasp this right now, I do know that. For now, I just want to believe I am doing the right things, the things my mother would want me to be doing.

I will post again in a day or so with more details regarding the memorial service.

Watching

2004-12-18T18:28:00.000-06:00

This was sent to me by my sister Kerri. It is no secret that my parents took many people into our family, but Kerri was a special one. Kerri was Sara's best friend, my parent's 4th daughter, and a dear friend to me. I have always considered her to be a sister, she was around so much it was hard not to think of her as just another one of us. My parents took custody of Kerri after some things happened in her life and she has been around ever since.

I will be posting another post this evening, but with Kerri's permission I have decided to share this view.

"When watching someone die, you must be very quiet. Always look down at the ground and examine your feet. Be uncomfortable and very somber. Allow your eyes to fill with tears. You will bite your lip until it bleeds, but you won’t notice until you wipe your tears with your sleeve and feel the sting of the sleeve on your lips. You will see the bloodstain on your sleeve, and then you will believe. Since the woman you are watching is your godmother and the closest person to a mother you have, you go over and kiss your aunt as she weeps. Hug her and love her. Watch your adopted sister’s tears roll slowly down her cheeks. Watch them fall to her shirt. Watch the tears leave large circles on her shirt and on your shirt, since she has been crying on you as well. Watch the woman’s grown baby crawl on the bed beside her and stroke her head as she dies. You will remember how thin her face was before, wonder if she looks healthier with her face filled out. You will start to cry again and try to hide it. Make sure you have a tissue in your hand so you won’t have to keep wiping your nose and your eyes on your sleeves. Watch her daughter lie beside her and hold her hands. She will be sleeping, and you won’t want to disturb her, even though you know you can’t since she is in a coma. You will want to go and hug her and lie beside her as her daughter is doing, but you will resist. You will decide instead to sit on the end of her stark white bed next to her feet in the hospital compression socks. The bed will sink as you sit next to her weak body. You will regret that you hadn’t seen her more, even though you came through her city often. You will regret that you felt you should not lie beside her. That you felt that this time was for her daughter and real family and not for you. You wonder if she felt like you were her daughter, and you decide that she did. You will hear her raspy breathing, and the tension will build. You will wish that you were anywhere, instead of in this room watching her die. You will look at her pale, blank face and she looks so small. And you will jump every time her breathing stalls, even though she is hooked up to oxygen. You will place your hand on her foot, and your godfather will place his hand on your shoulder, and you will suddenly be aware that the only sound you hear is "psshhh....pause.....psssh.....pause...." and the sound of sobbing in between her oxygen canister noises. You remember that there are many people in the room. You will look around to see pleading faces looking longingly at the pale body lying limp in the bed. They wish that there was something they could do. There isn’t anything. You will take a firmer hold on her foot and lay your head on the bed next to her leg. You will whisper that you love her. Wish that you had told her while she was conscious. You will wonder if she can hear you. And you will cry as her daughter strokes her head. You will look up as she takes a breath in, and the releases it. You will search the face of the nurse, a sign for anything. You will feel the tears rushing down your face as her hand is laid on the bed, you know it is over and your heart suddenly feels very alone. You miss her already. " -Reprinted with permisson

Everywhere

2004-12-16T13:25:00.000-06:00

After Sara died, my mother lived by the song "My Immortal." That song contains the following lines:

These wounds won't seem to heal
This pain is just too real
There's just too much that time cannot erase.

That makes so much sense to me as we enter the holiday season without her. (Yes, I do know it should be written with caps. Tough. I don’t want to bring any extra attention to than I have to.)

To all of you who have left such beautiful comments, complete strangers, thank you. Your words have hit home, your advice has been noted, your kindness much appreciated. Some of your comments have made me weep, because you do know this pain. Some have given me hope that it won’t always hurt this much. To those of you who knew my mother personally and have come to leave comments, thank you from the bottom of my heart. It makes my heart beat one beat faster to know that she isn’t being forgotten, that her words, her actions, her love, they meant something to you all. Thank you for that. I know if you knew my mother, you too are dealing with your own grief. It touches me that you were still willing to reach out to help . . . thank you.

I am writing this from my parent’s guestroom in Boston. My father and I have returned here to make the final arrangements for the memorial service (more to come on that tomorrow). My husband had to return to Berlin for a few days, my daughter is in another state being cared for by her paternal grandparents (who will no doubt spoil her rotten). My aunts remain in Missouri where they are preparing things for the movers, attending a Hospice memorial service, and wrapping up a few final things.

My mother is everywhere in this house. Every design, every photo, every color was something she devoted herself to, it speaks her name. The last time we were here, I couldn’t force myself to go into the master bedroom. Tonight, I went in and just took in my mother. Every corner that I looked in, there she was. Her lipstick still sits on the vanity. Her favorite photo of our family on her bedside table, and her embossed memo pad remains near the phone with a hastily written message still on it.

When we first arrived, I sat in the den and stared at a portrait of my parents that hangs above the fireplace. It was taken eight years ago, and I remember the day. Sara was graduating from high school. She had her whole life ahead of her. My parents were proud of her, of course, but there was something else in my mother’s eyes that day. Was it sadness at her last child leaving the nest? Was it relief that she would have more freedom with an empty nest? No. It was fear. The look in her eyes was fear. I asked her about that, years later. Why was she so afraid? She told me, "I don’t know who I am if I am not mothering someone."

That was my mom, always a mother. My aunt tells stories of when they were younger, how my mother would tend to the local children as if they were her own. She did the same for me. I never once thought of myself as anything but hers. She never drew the line between the step and real. I was hers, through and though. As I grew up, I knew I had a mother elsewhere, sometimes I even remembered her. Mom would let me talk about her and then tell me that whenever I wanted to, I could start a relationship with her (biological). It never crossed my mind that it was something I would ever want to do. To this day, I still don’t. I know my mother. Her name is Shar and she was the most amazing person I have ever known.

When Sara was adopted, my parents never hid that fact from her. She grew up knowing that she hadn’t just been born and adopted, she was chosen. She knew she was loved, but most of all, she knew she was ours. Again, my parents never drew that line for her. She was theirs and when she was ready, she could begin a relationship with her roots. She started to proceed with that once, but after a few days, came home and told my mother "I know where my mother is . . . right here."

That’s how it always was. She was right here. Now, I can’t feel her, can’t see her in anything other than photos, can’t touch her, can’t hear her wonderful laugh. She isn’t here and I don’t know how to cope with that. I don’t want to cope, and I don’t even want to live without her. I beg God (even in my anger, I need to believe she is with Him) to please just end my life, I am not brave enough to do it myself. I beg Him to return her to us (impossible, I know) or to at least give me an answer as to why He has done this to our family. My pleading goes unanswered, perhaps even unheard. I don’t know how much longer I can do this. It has to get easier, right?

One Month

2004-12-08T11:30:00.002-06:00

Today marks one month. One month without her, one month of struggle, one month of trying to figure out what we are supposed to do now. How do we exist? How do we survive? Her presence here is dearly missed, at times I am unable to take the breath required to go on. I don’t know what else to do, but type here. Just when it seems I have some sort of grasp on things, I don’t. I am suddenly lost, on my own, unable to even think of what I need to be doing.

This morning, I found myself walking down the aisle of a local store, suddenly stopping, to search for her. I miss her more than words will ever explain. My heart feels broken. She used to tell me that any broken heart could be fixed, as long as God had all the pieces. I am now doubting her insight. How can God fix something that hurts this bad? Did she have any idea that it might hurt so badly that I couldn’t even breathe? Did she know that each time I look at Emily my heart feels the ache of realizing that she will not have her to grow up with? Did she know this?

Did she know that it would hurt to hear laughter, that the only thing that brings any comfort right now is knowing that there are others out there that hurt just as badly as I do? Did she know this? Was she aware how much I would want to go with her? Did she know that it would be a constant upon my mind? That I would be unable to think of any other subject matter? Did she know that I would not be able to go outside, not be able to see the Christmas lights without thinking of her? Did she know that I would see each light and remember the joy upon her face that night?

We set up Christmas lights, right before she died. We decorated the exterior of the house in every white light we could find, she only liked white lights. She used to tell us that colored lights take away from the peaceful reason of the season. How odd the things I never understood growing up, but I do now. It was October, how silly we felt doing it, but how excited she was. My dad carried her outside and showed her the lights. We didn’t know it at the time but her vision was almost gone at that point. I don’t know how much she really saw, but her eyes were bright with joy that night. We described each light strand to her, showed her the outline above her window and she cried. I remember her saying "You did this for me?" It seemed huge then, a large undertaking that seemed pointless. How I wish know that we had done it months earlier. How I wish that we had done a million things over and over again. The simple things made her smile, those things that touched her. We would paint her toenails, and she would smile. Something so silly, it excited her so much. I remember rubbing lotion on her and her whispering her thanks to me. She touched me. I remember her touch. Her bony fingers . . . she had lost so much weight and her skin became like tissue paper, so thin, but yet so soft.

She would ask us to read to her, those last few weeks. We would read her to sleep, hold her hand, and whisper goodnight to her when she finally fell to sleep. Her eyes would fly open and she would beg us to keep reading, to not leave. We would read the same thing, over and over again. Each time, it was the same process. Stop reading, eyes would fly open, begin to read again. I wonder how many times I read Walden to her in those last few weeks. I would read it for the rest of my life if it meant she was back here.

They say the first year is the hardest in grief. They also say that it does get easier, that time heals all wounds, that in time you begin to forget the horrible and begin to remember the good. I am waiting. Right now, all I can remember is those last four weeks. I can’t get them from my head, and my heart won’t release them. I remember her screaming in pain. I remember her laying there silent as the tears ran down her face, a pain she couldn’t even express. I remember her look of fear when she tried to speak and realized we couldn’t understand her. I remember how she took one large breath, two shallow sighs, and with that, she flew to the Angels. These are the things I can’t shake from my head, her gasping, her begging us to make sure there was no pain involved, her terror. Right now all I can think of is each horrible occurrence that came along with my mother’s death. It is too much to think about, so I shut my eyes, to block it out. Then I am faced with visions of her final days. There is no hiding from this.

Weeping

2004-12-05T21:04:00.000-06:00

I can’t do this anymore. Over the course of the past few days, I have tried to post entries that would help you all to understand what is going on. I can’t do this anymore. I can sum up the past two weeks for you like this: it’s cruel, cold, and unbearable hell. The pain of living is too much. It is heartbreaking and the pain with each new thought takes my breath away. I can’t do this anymore.

We returned to Missouri last week in time for Thanksgiving. It was my daughter’s 1st birthday last week as well. I am so glad she can’t remember this time in her life because it is not happy nor is it something I want her to keep in her memory. We all avoided the holiday. We found that pretending it didn’t exist didn’t make it go away. It just made it easier to weep through.

Since that time we have been packing up this house, sorting paperwork, wrapping up things here so that we can return to Boston for Mom’s memorial service. This week has been incredibly difficult as we have been opening up mail that has been delivered in the past few weeks. The cards and letters are kind and touching, the memories you all have sent have carried us in rough waters.

Paying the bills that have accumulated during the course of Mom’s illness has been horrible. Although the cost is horrific, the most horrifying thought is that there are pages after pages of medical bills, testing, treatments, and not one of them saved her. Each check we write, I feel like we are paying for failure. She died. These treatments didn’t save her. They stole her from us. They took every good day she had and made it horrible.

As I write this tonight, I can see on the carpet an outline from a stain that we have been unable to lift as of yet. It is the outline of my mother’s blood. Two days before she passed away, she began to cough and then moved on to vomiting blood. Before we could do anything to control it, she was gasping for air. The blood was all over her bedding, the floor, her body, us. The outline of the stain is all that remains. This memory is yet another reminder that said treatments didn’t work.

We are planning Mom’s memorial service, each plan she had in place will be used. We are simply adding our own final remembrance to her as well. Between this, the sale of the houses, the medical bills, and finding the energy to respond to the mounting pile of sympathy cards, there leaves little time for me to feel anything other than the immense pain.

If you have e-mailed any of us, called, or sent mail, please understand we are each trying to find the strength to respond with the proper words, but for now a large thank you is sent to each of you for carrying us in thought during the past few weeks and certainly for carrying Mom in prayer during her battle.

Fly

2004-12-04T23:12:00.000-06:00

November 20, 2004-11:25p.m.

This afternoon, in the gloaming hour, we gave Mom her release to fly with the angels. We stood united as a family with friends and loved ones all whispering their own words of flight to her. After days of being torn apart over certain choices, I felt as if we stood as one, bonded together to give our love to Mom.

We each decided to write something to her, something we would only read there. I began to write my words several days before on our drive to Hilton Head. It became an obsession for me, it had to be perfect, it had to say everything. I could not fit 40 plus years of memories into a page of words. It was not possible. I kept thinking of the novel by Gunther, "Death Be Not Proud." I remember being in college and calling her to discuss it, spending hours with her pouring over every word, deciphering the meaning and the emotions. "L’chaim," she told me, "L’chaim." It became our secret code, she would whisper it to me when she hugged me goodbye, sign her letters with it, write it on my books. To Life, she told me, to life. Only now do I understand that novel. Death Be Not Proud.

In Mom’s last months, music became her link to expressing herself with even more power than it had in previous times. When the words would no longer come, she could hear the music and guide us to understand what she was feeling. A young lady named Erica began to share music with her in those final weeks adding to Mom’s extensive collection of favorites. In those final days, we kept three songs on rotation. I leave you with the chorus of one of those, a chorus we found ourselves singing today as we gave Mom’s ashes to the water she loved so much.

"You’re dancing with the angels
Walking in new life
You’re dancing with the angels
Heaven fills your eyes
Now that you’re dancing with the angels."

My words to her as we gave her our blessing:

Here we stand, Mom. You loved this beach, this air, the sea breeze hitting your face, the sound. I don’t remember ever seeing you unhappy here. Each year when we returned, you seemed refreshed and relaxed, ready to handle life again with that beautiful grace that you always displayed. Today, we are here to release your spirit to the angels, to truly let you fly in the heavens. I know Sara is with us as we let go of your physical body today. Hold her for me, Mom.

My entire life, I have known you as my mom, never as anything else. You never made me feel as if I wasn’t yours, born in your heart, forever there. I never felt as if I needed to search for anything else, my life was complete with your presence. Thank you for silently guiding me to be a better mother, helping to advise me on being a wife, and for being my best friend, not just my mother.

There will not be a moment for as long as I live that I will not grieve for you, but there will never be a moment that I don’t count myself blessed for being your daughter. Fly free . . . L’chaim.

Beach

2004-12-03T01:53:00.000-06:00

November 19, 2004-3:16a.m

We made it to Hilton Head, the place where Mom found her peace. It is here that we will say goodbye to her on Saturday, here where we will hold each other as we send her remains to the water, here that we will try to find some point to begin the healing that is so crucial. Please, Mom, if you can hear me tonight, be with us. . . I can’t do this alone.

Departing

2004-12-03T01:48:00.000-06:00

November 16, 2004

Yesterday, I kissed my mother’s forehead, patted her arm for the final time, and gave my father my blessing to have her cremated. As much as Mom faced in this past year, I can’t imagine anything was harder than this. She was more beautiful than ever, so peaceful, but so cold. I don’t think I expected her to be so cold. I don’t remember Sara being so cold, but I also don’t remember touching her skin before the casket was closed. Crazy thoughts I am having lately. My mind is wandering back and forth between this year and last, at times I am unsure of what is real and what isn’t, what has happened, what hasn’t and what is going on. My husband claims it is shock and it will sort out soon, but I have my doubts.

Yesterday we spent hours with Mom’s beloved senior pastor. His words were of no comfort to me, but he warned me before we spoke that I may not feel anything and that was okay. Mom’s final days, they were so bad. I can’t stop asking God why he allowed that, why. She had nothing but faith in Him. She lived her life for Him, for the glory of God. He let her suffer. I don’t see the fairness.

Those last few days, she said very little. She couldn’t form the words and then she slipped into a basic coma state and became unresponsive. Before that, her words were difficult to understand and harder still for her to push out, the tumors were taking her air. Her last full sentence to me was "Are the leaves all gone?" I knew what that meant, she wanted to know if her dearly loved fall was ending. In my heart, I know she was waiting on three things before she left us, one of those was the ending of Autumn. She loved this season, but it just seems so barren to me right now.

Boston

2004-12-03T01:46:00.000-06:00

November 15, 2004-late night.

We made it to my Mom’s beloved Boston home. She loved this house from day one. I remember the first time I made it home to see it. She took me on a tour of each room, pointing out the "charming" areas of this 113 year old home. She took me into her writing loft, something my Dad designed to give her a spot to create and enjoy her passions. She took me on a walk around the edge of the property, arm linked in my mine, patting my hand and telling me she wanted grandchildren to play and romp on the grass. It was a hint well taken.

My sister and I were there that day, the first time I had been able to see the house. I had already be warned by Ladybug that Mom was head over heels in love with this house and to expect hours of gushing. Instead, I had hours of her gushing over us, her girls. She loved us more than anything else. It is said that my mother was a born mother, that she was destined to be a mother. That could not be more true. She was the perfect mother.

Being here is hard, very hard. On the drive to the house this evening, we passed places that I know were her favorites...her favorite place to eat, walk, shop, read. Being here is hard. I miss you, Mom.

Soon

2004-11-21T00:32:00.000-06:00

An update is coming (actually seven that have been backwritten to be exact) soon. We have not been in places that have given me constant broadband connection and I just have no patience right now to deal with dial-up waiting times. Just please know I have read your comments and have felt your thoughts being sent our way, thank you. I would love to be able to tell you that things are better, that we are doing great and handling all this well, but that would be a boldface lie. We are struggling to breathe right now and to be able to take steps in healing just seems like it takes too much energy. Strength doesn't exist, not for any of us, not now. I will update soon.

Wishes

2004-11-14T03:21:00.000-06:00

I would like to take a moment here and thank you all for your support of my breakdown concerning God. I am not apologizing, nothing has changed since I posted it, I still feel the exact same way. I know Mom would be saddened by my words, but she was a woman of amazing faith. I am sure that she can also understand what I am feeling. Perhaps she felt this way at times as well and just didn’t share it. Either way, God is still hated within my heart and truthfully, I can’t see that changing anytime soon. I will try to keep an open mind on this one (and will go back and read over Job again at the advice of two very kind readers).

In less than one hour my husband, my child, and I will take a flight into DFW International. The airport is quiet, Alex and I are lost in our individual thoughts and Emily is sleeping in her stroller. We are meeting family in Dallas, connecting straight into Logan to be greeted by family friends. My father left this morning, he accompanied my mother in flight to the town she had a love/hate relationship with. When I spoke to him late last night, he cried and through large sobs told me that this was the hardest thing he has ever done. Coming from the man who has had to say goodbye to two daughters, close friends, and numerous other family members, I know he is hurting beyond any words that I could write here.

We have had to make some very difficult decisions regarding my mother’s after death wishes. She planned her entire funeral, made arrangements far in advance, made her wishes very clear. She wanted a large funeral, one where people could laugh and remember. She wanted to be buried next to my sister. She wanted a stone with the phrase "Gaudeamus igitur" ("Therefore, let us rejoice") written upon it to remind us all to be glad with her, to know she was filled with joy where she is now.

After many tears we have decided there will be none of that. It is incredibly difficult to go against my mother’s wishes. I don’t think we started out wanting to do that, it just happened. First it was with the autopsy choice. Some of us said yes, some of us said no (the yes’s won), some of us didn’t have any input. Then it was with the burial plans. Then it was with the service schedule, how it just didn’t seem to be easy to coordinate a time nor a place. Some of us stood firm with her desire to be buried near my sister, some said please take her to the ocean because she wanted to go to the ocean, some had no input. Finally, the ocean has won. In the end, it was my father who stated that he wanted the same thing for himself and that he believed she had true peace when she was there. We will give her the last thing we can, the last desire we can fulfill for her, it will be. She will be cremated and we will take her to her favorite place on this earth: Hilton Head, South Carolina. She will get her stone in Massachusetts, and she will forever remind us to be joyful in her own way.

As she looks down upon us today, I hope she understands and I hope she knows why. Her plans for services will be put to use, just in a slightly different manner. We will hold a memorial service at a later date using her plans, holding everything just as she wanted it. Our hearts are bleeding, and we don’t want to be making these choices. We had so much time to talk to her, why didn’t we ask these things? Why didn’t we ask if she would like this? Why didn’t it cross our mind to ask her so we would be able to know for certain now?

My father flew with her to Massachusetts. One of her last wishes included being given the final blessing from their Pastor. This was not possible at the time and so this morning at 11:12a.m, she will receive her final blessing from the senior Pastor of her beloved church. After it is given and all is finished, my father will allow them to do what they need to do what they need to do and we will wait. We will wait together as a family, holding each other as we receive friends and family at the reception area and in the days to come. On Wednesday, we will drive as a family to Hilton Head and spend some private time remembering and attempting to find some healing in all this shattered pain.

This is no family vacation, there will be no happy photos taken, no postcards sent back home to alert everyone of Emily’s first trip to Boston and to the coast. She will never know her grandmother and thankfully will never remember this time in her life, the time when her mother just wants to curl up and die. She will never remember the day her mother sat on the bathroom floor contemplating joining her mother in Heaven. She will never remember her mother screaming to God on the night of November 8th, screaming to just take her as well and get it over with, there was nothing here left to live for. She will never remember the endless tears, the countless questions, the shattered glass from the dozens of glasses her mother threw during an angry fit of grief. Thankfully, she is too young, too happy, too loved to remember this pain.

I will do my best to update later today, at least a short note, if nothing else.

God

2004-11-12T20:32:00.000-06:00

An Open Letter to God:

God,

I hate you.

Harsh words coming from a devout Christian, I know it. However, you have not shown me that you are a merciful God. Instead you have shown me that you aren’t in the business of healing broken people, just in the business of standing back as it gets worse. You haven’t stepped in when we needed you to do so. Instead, you stood back and advised us to have some faith.

Fuck faith.

I had faith when you allowed my sister to perish in a horrible tragedy.
I had faith when you allowed my sister to die in pain, leaving us behind.
I had faith when you allowed my mother to suffer thru endless rounds of chemotherapy.
I had faith when you allowed it to seem as if she was going to improve.
I had faith when you allowed her to face her own demise with grace.
I had faith when you allowed her to stay with us for so long.

Then you allowed her to have pain. You allowed her to lose her abilities. You allowed her to linger on when she couldn’t speak or recognize us. You allowed her to have fear and the look of terror in her eyes.

My mother was a wonderful example of your love. She believed in your words, trusted you with her life (and her death), and knew that all things have a purpose. She was a devoted Christian even when she went thru the fires’ time and time again. She never lost her faith.

We had faith, God. We had faith in YOU, holding tight to the promise you have given us, that you will not forsake us. It certainly feels like you have forsaken us now. Where were you when she begged you to make the pain stop? Where were you when we begged you to bring her peace? Where were you when we begged you not take her from us? Where were you when we prayed for her illness to be treatable? Where were you, God?

Merciful God we serve. Thanks so much for restoring our faith, mending our hearts, making everything right. Thanks. Until further notice, I need a break from you. I need to make sure I still want to serve a God who gives such mercy and compassion. If it weren’t for my sister and my mother being with you, I would walk away now. Be glad you have them by your side.

It is the only thing keeping me from becoming an atheist.

Signed,
Shelly

Hurting

2004-11-12T20:00:00.000-06:00

Written Wednesday, November 10th.

I have tried to type this several times and each time the words don’t make sense. I have given up on making it all come together and have decided instead to just type. It may not be clear to you or it might be very clear, depending upon who you are or how well you know my Mom.
It has been just over two days since she left us. Two incredibly long and painful days. It has been two days since I heard her breathing, kissed her, or stroked her arm. It has been two days since she went to be with her Angels. Two days filled with uncontrollable tears, amazing joy, and a sorrow that makes your body hurt.

I haven’t spoken much on here what transpired the last week of my Mom’s life, but over time, I would like to talk about it. There are so many things that happened . . . I just have to have some time to understand all of them. Tonight, I will begin to share some of the events, as I can. I am sure a number of them will bring chills to your soul, some may make you laugh, and finally, some will make you weep harder than you thought you could. At least, this is how it is has been for me this past week.

Mom stopped knowing who we were, stopped responding to our voices late on Sunday afternoon. She started sleeping deeply with very labored breathing. We didn’t stop talking to her, crying with her, laughing at her. We believed in our hearts that she could still hear us and maybe, maybe she was watching us from up above already. She couldn’t speak, couldn’t move her body on her own, no longer could focus her eyes or track us, but we knew she was happy . . . wherever she was.

Due to the partial stroke she had a few weeks ago, her arm required constant elevation. She couldn’t do it herself and often it slipped from the pillow. We would gently place it back on the pillow, kiss her forehead and turn to walk away. We would hear her stir and would turn back to see her. She would be smiling at us, as if to say thank you. We hope this means she knew we were with her, watching out for her, and loving her more deeply than ever before, if that was even a possibility.

Three hours before she passed away, she had a massive grand mal seizure. As we held her to ensure she didn’t injure herself, I felt her body relax and I figured it was because the seizure was ending. She became limp, lifeless and yet, she was still breathing. It was at the moment that I realized she was gone already. She left us. The Angels who called her name had waited long enough, she went to be with them. I am sure she was watching us as we waited, wondering how much longer her battered body would continue to fight. We covered her in kisses, whispered love into her ears, rubbed lotion upon her broken and bleeding skin. We sang to her. We read her passages from Walden and from Whitman. We held her hands, but they were so cold.

We told her it was okay to leave, okay to let go, okay to go with Sara. Her breathing became even more labored, her blood pressure started to drop, her heart rate became increasingly less stabilized. We wondered if she was hanging on, if she was going to be coming back to us. We waited and we hoped. We waited and we prayed. We waited and we sobbed. Just when we relaxed enough to let ourselves believe she wasn’t leaving us yet . . . she stirred. We raced to her side, her breathing changed, we knew it was coming. She went from labored, ragged breaths to calm, steady breathing. We each touched her. She was so afraid of being alone. We wanted her to know we were all there, all touching her and assuring her it was okay to go. She took one sigh and then there was silence. I thought she was gone. Quietly I said "Mom." She took a large breath in and then there were two short sighs and then she was gone. I knew she was gone, there was no point in asking.

This is all I can say for now. The rest just hurts too much.

Found Her Peace

2004-11-08T21:54:00.000-06:00

For weeks, we have been pleading with God to help Mom find her peace. This morning, November 8th, 2004 at 11:12, my mother took her final breath and jumped into the arms of God. She leaped over the unknown, grabbed onto the Angel that has so patiently been calling her name, and she slipped from our tight grasp. With a sigh, a pause, and two breaths she was gone, off to be with her Sara. It was peaceful and calm, just as we had prayed. She was content at what she was seeing, content enough to leave us and go there for herself.

We miss her more than words can ever explain here. We have been missing her for days. She left days ago, at least the Shar we knew left days ago. Today, today was just letting go of the last piece of her, and letting go of the other parts that have been gone for days. She stopped speaking two days ago. I never thought I would say I miss her talking, but I do. We lost her when she stopped responding to our voices. We lost her again when she stopped responding to painful stimuli. We lost her again when she no longer startled with loud noises. This should be easy, we have lost her so many times. However, it just hurts that much more right now.

I have written this post 10 times over. Each time I delete and start over, uncertain of where to begin or even where to end. My tears seem to blind me at times, and my fingers stop typing to allow me a moment to absorb the silence. Silence is not so golden. Especially not when you are used to a space filled with noise making medical equipment that is suddenly gone. Then the silence is so loud you can’t hear your heart crying anymore. You take a breath and hear a loud wailing coming from somewhere near you. It is only then that you realize this unhuman sound is coming from deep within you, it is the sound of your world crashing. That’s where I am right now.

More postings to follow, I have much more to say. For now, I just wanted to inform those of you who may not have aware yet. I will post arrangements as they are made and at some point, I will back to type my posting from the last two days.

Sorrow

2004-11-06T22:30:00.000-06:00

Her wake time is short, her pain is low, but her terror is elevated to a point we can’t help any longer. This is where she must walk alone, walk to those who have gone before her, grab onto them while releasing her grip from us. She is scared and we are terrified. Our hearts are breaking tonight.

She speaks of those who surround her, those we can’t see. She hears them speak, searches for them, begs us to find her child, her Sara. We can’t help her, she knows this and yet she can’t stop pleading with us. We assure her Sara will come to her when it is time, to stay calm and relax, to trust us. She is unable to trust us, we are unable to trust the words we hear coming out of our mouths.

Then the silence starts. Hours of unbearable silence with the only sound coming from within her chest . . . gurgling, raspy sound of sorts. We sit near her, holding vigil, waiting for her to wake, or to leave us. We wait for true silence to occur, often beg for it. She is in need of the silence. Her body is weak, her mind is growing tired, her time here is complete. Then she awakens only to have five minutes of clarity and 10 minutes of panic. It is a pattern that continues over and over thru the days and nights. It is rattling to your soul and shakes you to your very core.

This is only one nightmare of uncertainty. We make promises and hold her tightly, all the while silently pleading with God to help us out on this one. He turns a deaf ear, allows her to suffer more, allows her to linger unable to be herself. She begs for us to help her, and we beg God to help us. It continues.

She asks for things unusual for her: a watch, a necklace, a shirt. She tells us she needs to know the time, and she needs to be somewhere. We bring her the watch and cry silent tears because we know she has lost her vision. We offer to put the necklace on her, she declines and asks just to have it placed near her. We oblige. She asks us to leave the shirt and slowly we see her small fingers reach for it. With that she smiles and sighs, we think for the moment she is at peace. We are all well aware it will not last. It never does. How we pray for the moment that she finds that peace . . . how wonderful that will be for her.

Her blood pressure continues to fall and rise several times throughout the day. Her responsiveness is gauged on several factors, and she is near failing on all of those. Her eyes no longer see us, and she doesn’t track at all. She fights for each and every breath she takes, regardless of the amount of oxygen she is receiving. We watch in fear as she struggles to grab one breath of unobstructed air, helpless to do anything but plead with God to end this. We hold on to the medical knowledge that this will not be much longer, that she won’t be like this much longer, that she will find her peace and leave us to deal with our overwhelming sorrow.

Prepare

2004-11-04T23:55:00.000-06:00

Modern day medicine tells us that when death is near several things will occur. Organs will begin to fail and shut down, levels of consciousness will deepen, just to name a few. Mom has consistently proven over and over again that she is NOT in the control group. If it is to be the standard, she will go against it. Only two exceptions to this rule are continuous currently: her breathing and her ability to regulate her body temperature.

She alternates her breathing. During "good" periods, she can grab onto a breath of air and not struggle. During the "bad" periods, she gets scared and that just makes it ten times worse. During her deep sleep, she is doing a bit of Cheyne-Stokes. We were ready for this, prepared we thought.

Nothing can prepare you for the sound of her choking and not being able to help. Nothing can prepare you for the look of terror you will see in her eyes as you place a mask over her mouth to help suction the mucous from her lungs because she is no longer able to clear her own airway. Nothing will prepare you for how loud the silence will be as you wait for her to grab the next breath. Nothing can prepare you for this.

We had a power outage today for several hours. That has only caused havoc for her. Because she is in need of medications round the clock, oxygen round the clock, and we are monitoring her rates round the clock, having no electricity proved to be a very large challenge. Without the aid of friends here who pitched in and made sure we had back-up electric for her, we wouldn’t have been able to keep her at home this afternoon. However, the electric has since come back on, she is resting in the arms of my father, and for now, it is calm. I would say for now the world is right, but there is not one thing right with this, not one at all.

Her awake time is drastically shorter than it was even yesterday. Her temperature remains high and ravages her body with sudden chills frequently. Her legs are blue, her hands cold. Her ability to hold on to what we are saying is nonexistent. Patience is something we have all learned to not take for granted. She speaks to the angels, waves to the people we can’t see, and tells us about babies and snow. We know these are all signs pointing to the end.

Anyone who knows my mother, knows that she lives for the sound of music. It moves her from within, she absorbs each song she hears, her musical taste can only be described as eclectic. Growing up, she was always singing parts of songs while we working together. She might not know the whole song, but she always remembered at least a verse, usually one that she could apply somewhere else. She can’t carry a tune, but she has the most beautiful voice I have ever heard. It makes my heart go pitter-patter, makes me realize how lucky I am, and makes me want to sing to the heavens along with her.

Every memory I have of my childhood can be linked back to music somehow. It only seems fitting that in my mother’s final days, music plays a major role in her contentment levels. Several members of our family are here with us, supporting, loving, praising, and weeping. One thing we can’t escape is recounting one of the most beautiful moments we all have shared . . . my parent’s 35th wedding anniversary. It was intended to be a small, intimate dinner. Due to overwhelming love for my parents, it turned into a very large party. In the middle of the chaos, we heard my father clear his throat and begin to sing a moving melody to her. She sat with tears in her eyes with a smile that beamed.

". . . When the years have done irreparable harm
I can see us walking slowly arm in arm,
Just like that couple on the corner do.
Cause I will always be in love with you
When I look in your eyes, I still see that spark
Until the shadows fall, until the room grows dark.

Then when I leave this earth,
I'll be with the angels standing.
I'll be out there waiting for my true companion.
Just for my true companion . . ."

This song has proved to be true as we witness the love my father has for my mother. He is her world. She is his. Together, they make me believe in forever love. He sits with her now, holding her, caressing her head, whispering his love for her into her ear as she sleeps. He tells her of the times they have shared - the good, the bad, the ugly. The love they have for each other is pure and amazing.

Journey

2004-11-02T20:30:00.000-06:00

Her body is telling us our time with her is drawing to an end. Her breathing becomes less routine and appears more out of necessity rather than from habit. She is weak and tires after a few breathless words. The smile remains slightly larger at times, barely curled at other times. Her responses are delayed and sometimes she just can’t respond. We touch her, she doesn’t respond with the same heightened sense of awareness as she had just 24 hours ago. Her hearing is still intact. We know this because 75% of the time she opens her eyes in response to our voices. The other 25% she is in a very deep sleep, unable to break free from the wonderful places I am sure she is seeing right now.

She sleeps soundly but this comes after a few scary breathing moments. She speaks, but it wears her out. She gasps for breath and fails. It takes a moment to relax again and then she is once again resting. Her cat, Orange, has not once left her. He remains curled up under her arm, purring loudly, ever so often reaching up to pat her face. He knows he is losing his best friend. He, like all of us, doesn’t want to leave her side, doesn’t want to give her the chance to leave us without our knowledge.

Music is a constant here today. She seems soothed by the continuing lulling. We have a wide variety playing (Tomlin, Vivaldi, Casting Crown’s, Springsteen, etc.). She loves them all. We read to her, sit with her, cry with her, and most of all, we laugh at thoughts of her. Mom’s pain level is well controlled, she replies no when we ask if she needs an extra dose of pain medication. She isn’t following us with her eyes. She hasn’t done this since early afternoon. This is part of the dying process that someone of her advanced disease goes thru. I can only hold my breath and pray she finds her peace soon.

We are certain she will.

Light

2004-11-02T11:29:00.000-06:00

The light at the end of the tunnel comes shortly before death, metaphorically and perhaps, quite literally as well. I believe in my heart that Mom is seeing and feeling that light as I type this. Her day has been long. It has steadily become a much clearer picture of the end as the afternoon has turned into evening. As anyone who knows Mom can attest, evening and nightfall times are not good for her. Today, proves much different.

There is no agitation. There is no fighting as the day turns to dark. She is comfortable, a term she hates, but it applies. She speaks very little, but her smile is frequent. She startles when we kiss her, beyond that she is calm. She does ask for certain things to be brought to her side, has asked to see certain people, looks forward to spending time with others.

She asked for my daughter to be brought to her. In past days this has not proven to be advantageous for Mom, it tends to upset her at Emily being frightened. Tonight, it was if Emily understood everything. We brought her to Mom, quietly whispered to her that we were here. Her eyes fluttered open, she made a motion to have Emily brought closer. Emily was still has my mother kissed her hand and told her she loved her. Shortly after, they were both napping together side by side, both finally comfortable with each other. It is a moment in time that will never leave my memory.

Her decline started early this morning. In the beginning, she seemed scared and then fear was taken over by acceptance. Anyone who knows my Mom knows she has long accepted her fate, but this was different. This was accepting that the path could not be backtracked upon, accepting that she must go and hold our places, accepting that we will never, ever be the same again. Someone wrote that she was forever changed by Mom. That is said perfectly, she has forever changed us. It doesn’t matter if you were her daughter, sister, husband, or a stranger upon the street (she knew NO strangers), your life was forever changed if you knew her for one moment.

I will write more at some later time. Right now, I need time to hold her hand and tell her that I have been forever changed by her love.

(Erica, I tried to leave a note for you. We opened it, she LOVES it. I did put it on the repeat track for her, she seems to be happy with music today and that song fits so well, thank you for finding it for her. A day or so ago, she heard it and began to speak of it, I honestly couldn’t locate it. I am glad you could, she really does enjoy it.)

Weariness

2004-10-31T23:27:00.000-06:00

This is painful to sit and watch. She takes in a breath, holds it. I wait for the release, pray it comes soon, then immediately feel guilty. She releases, my heart cries. I hear them say pressure is dropping. I look up to my father, searching for something in his face, some comfort, some assurance that this means she won’t suffer like this any longer. I see nothing but weariness in his face now, not hope. We are all weary. She is weary.

Let go, Mom. Go to God. That is what my heart screams. Then I feel her hand curl around mine, her eyes closed, the corner of her lips in an upturned smile and I realize I don’t want her to ever let go. Please Mom, stay with us. Let me hang onto you forever and one day. Teach me how to raise Emily, stay with me, let me know you are with me always. I silently beg for her to hear me, to fight a little harder. Hang on, and we can fight this together.

The next round of pain hits her and I find myself pleading for God to grab her from this, don’t let her suffer anymore, just take her now. The night continues on like this, dragging for hours. We take turns sitting with her, talking to her, holding her. Unsure if she can hear us, we speak anyway just to hear ourselves. We laugh as we recount memories to her, we cry as we realize how much she means to us. We sit in silence listening for her breath, praying it doesn’t come, praying that she and God can forgive us for thinking that.

She has had her moments of clarity today. We were afraid to tell her what day it was, too afraid she would understand the symbolism and leave us. Maybe we were too afraid she wouldn’t. She sees things we can’t see, talks to people we can’t hear, holds her hand out for comfort from sources we aren’t allowed to feel. Her words are breathless, but her emotion is strong. She repeats to us how much she hates herself now. We continue to assure her we love her no matter what this awful disease has done to her.

She reaches for my dad and holds on to his arm so hard he winces. "Do. Not. Let. Me. Hurt." His eyes fill with tears. He tells her he won’t, he promises he won’t let her hurt. She sighs, her eyes close, and she falls to sleep. He leaves the room to collect himself, I follow and hold him close. I feel his chest rise and fall as he begins to weep. I hold him that much tighter. I don’t want to let go of him. My strength is in him tonight. We return to her side in time to hear her tell my aunt that she would like to be shifted a little, please. We jump to assist in this knowing it only brings her pain. She is calm and quiet. Her voice comes out clear as she says thank you and I love you. We assure her we love her, and she is silent once more. Until the pain hits once again. This repeats until dawn. We know this pattern.

God, I despise you for this. I will not utter my complete disappointment in you, but you are keenly aware of it already. Restore my faith in you. Help her tonight, whatever that means for us. Just do it.

For everyone else, we thank you for your thoughts, prayers, phone calls, e-mails, comments, visits, etc. We don’t always have time to say thank you when you are doing these kind things. Our appreciation runs deep, though. Just a few public thank you’s: Donna, thank you for everything you have done, everything you have done to help her, we appreciate it all. Tessa, she LOVED it, thanks to you and your boys. Erica, we have only recently learned of your impact on my mother. However, that doesn’t stop us from saying thank you. Hearing her laugh when she spoke with you was beautiful. Leslie, we got it and thank you, it was much needed right now. Mike and family, from our family to yours, we thank you. That was the kindest thing you could have done for any of us and we are all in awe at the thought that went into it, thank you. This list only covers a few of you in a list that is in the hundreds. If your name isn’t here, it isn’t because we don’t appreciate whatever you have done, we do. You all love my mother so much, I can never thank you enough for everything you have done and continue to do. Bless all of you.

Also, someone e-mailed asking about her immune system. We are begging you to NOT come if you feel at all under the weather. She has NO immune system, so if you have recently been ill, don’t feel well, or have been around small children who may be ill, please do not come. This isn’t because we don’t want you here, it is because any germ would be very brutal to her. Also, those of you who do make it to visit with her, remember that you MUST follow the guidelines posted in the kitchen before you can be with her. These are for her safety. I know it can be a hassle to do the scrub-downs each visit, but it is a necessity and NOT optional.

A note to drop-in visitors: We have decided it is best for Mom right now if we have fewer people coming into the house each day. She is easily upset and that is not what we want. We know you want to see her and say what you need to say to her, but please understand we are doing what is best for her. Please don’t hesitate to call, we can tell you if it is a good time to visit or not.

New Update

2004-10-30T16:25:00.000-05:00

I started this page, just so that I could use it to test out new images for Mom’s page. I never intended it to be used as a public journal, I had no need to let my feelings be known to anyone else. However, that has all changed in the past few weeks. This site has become my saving grace. It has become a place that I could vent and sometimes even scream at whomever is controlling this nightmare.

So many of you have e-mailed or sent well wishes via Mom’s blog page. I feel as though you deserve to know how the final chapter ends, but I have no desire to place this on her page. Her page, which I set up to be able to stay connected with her, has become a place of hope and strength for so many of you. We have received hundreds of e-mails to let us know how much she has helped others. This was the reason, to get her message out there. As we learned today, she was rated as the number 3 blog in almost 2,500 weblogs. That means hundreds of you who may not have known her before this, do now. This means you are absorbing her message, taking care of yourselves, and loving your life more than usual . . . this is what her message was all about. Her page will never be updated again, I won’t allow it. Her message needs stay in tact, clear, and effective, not cluttered by her decline.

Here, you will find out how she is doing (on an almost regular basis), how we are doing, and when the time comes, you will find arrangements here as well. Now, onto an update on how she is.

After having some problems yesterday with breathing, not liking the injection she received in her back, and having more pain that I have ever seen, she is doing well today. She is relaxed and quiet. She is tracking less often (the eye movement that occurs as she catches the outline of something, her eyes track it), her breathing is less labored, her rates are slowly falling. For the past few days we have all felt as though she is holding out for something. Some of us believe she may be waiting for Halloween to be over with, other’s have different opinions. I don’t know what to think.

Her sleeping habits are now taking over the majority of the days. Nighttime, we are not so lucky. As most people who are at this stage, she is very fearful of the night hours. She will lay for hours, just staring at something, unable to sleep (or unwilling to let herself). We just want her to be in a state that she can relax, sleep or not.

We have all agreed that the end is close, just none of us can confirm just how close. She has already surpassed the time frame the hospice gave us. She is a fighter, that is for sure. If any of us knew what she was fighting against, we would fix it. However, we have been told that death doesn’t go on our time table. Her death will occur when she is ready, when she is needed elsewhere. For now, I only wish her peace.

Hating

2004-10-29T17:36:00.000-05:00

At first we thought it was that damn tumor. We figured it was due to swelling. Now we know it was a stroke. After all this, she has had a mini-stroke. Her speech is impaired, her arm is useless to her, her ability to even swallow has been compromised. Today, she cried and told me she hated herself. She knows how much she has lost. How do I explain to her that we hate what is happening to her, but we love her even more than she will ever know?

God, I blame you. I have always been taught by her to not blame you, but I do. I hate you for this. I hate you for allowing this to happen to her. I hate you for not giving her peace now. I hate you for so many reasons.

My hatred against you doesn’t last long. She would never allow me to stay angry that long. She taught us to not stay mad. It is for her that I love you. Give her peace, God, just give her peace.

Break

2004-10-29T04:26:00.000-05:00

She is having a rough day. Rough enough that I can’t stand being here with anymore. I can’t stand to see her like this. I can’t stand to see this 89lb woman cry out in such pain that it takes her breath away, this woman who is my mother. I need a break. We all need a break. She needs a break.

God, where the hell is her break?

Harder

2004-10-25T19:11:00.000-05:00

Today, we took Mom to the hospital for a spinal tap to release some fluid build-up. She wasn’t happy about this but did tell us she would like it if it didn't hurt so much. We promised her it would ease things and off we went. We ended up having to forget that method and we were all set to bring her home when it was suggested that she have a lower ultrasound to rule out blood clots. We agreed to this as did she.

However, in the middle of the test, she decided she no longer wanted to do it. They came to the waiting room to gather up as many as they could, she needed to be calmed. After several stern warnings, we finally got her calmed and transported back home. How can this get any harder?

Her Ocean

2004-10-24T22:44:00.000-05:00

I am typing this at midnight as we drive down Hwy. 71. We are in a caravan of sorts. My father, mother, my aunt, and my mother’s Hospice nurse, Debbie are all ahead of us in the Navigator. Seated next to me is my sleeping daughter, sitting up front is my mother’s nurse Caroline, driving is her husband, Kevin. Seated directly behind me is my aunt Sophie and a family friend, Barb. Directly behind all of us in another car is another family friend, Andy, my mother-in-law, and Debbie’s husband Mark. I have to pinch myself to make sure this day is real.

Today we took a journey. It was a journey of hope, of renewal, of sadness, and of peace. We took my mother to the ocean. (At least that is what she is insisting on calling it. In actuality we took her to Prose Lake.) This is not the only thing we have done today. I want to treasure this day forever. I never want to forget a moment of it.

This morning we asked Mom if she wanted to take a drive to see the water. After last night, none of us believed she would say yes, but she did. We made some calls, rounded up people and medications, and off we started. We hadn’t been on the road long when she began to ask for a drink, so we stopped along the hwy. at McDonald’s. Mom has ALWAYS despised McDonald’s so I anticipated a fight. I was mistaken. We ordered a Sprite for her and as I held the straw to her lips she whispered thank you to me. After she had a drink and shook her head she didn’t want more, she sighed and said it was the best drink she had ever had.

We started back on the road, but not before she made it clear she needed to call a certain person. The joy we heard while speaking to her was overwhelming. She was animated again, and it was so nice to see. We got to the city and asked her if she was hungry (knowing she was not). She said she was, could we go to a "real restaurant?" We headed to the nearest Chili’s eatery and asked for a table to accommodate all of us. The staff was very considerate during our stay, tending to every need we had, making Mom feel as if she was an important patron even if she slept through most of the meal.

We left the restaurant and headed to the lake. Once there, my mom became animated again. She insisted on being taken to the water’s edge, sitting alone so that she could devour the beauty and the took great pleasure in pointing out things we should photograph. After some time, it began to turn a bit chilly. We headed for the car knowing she was exhausted. Almost to the car we spotted them, what we had heard our whole time at the lake. The beat drummers. Mom was enticed by the lulling sounds coming from their ever continuing beating. She sat with her eyes closed, blankets tucked around her, oxygen tube attached. All this made me see a very peaceful person. A member of the drumming team came to speak with us, offered a traditional beat prayer, and proceed to beat out the most beautiful melody with his team. Mom slept thru most of this, but she had a smile upon her face.

We left the lake shortly after, intending to come home. She insisted otherwise. As we drove past certain places, she asked what they were. At this point, her eyesight is growing dim, so we told each store. She heard us say bookstore and that was it, she wanted to go. We asked if she was certain she was up for it. Long story short, 4 hours later, a bookstore, a Starbuck’s drive-thru, and a Wal-Mart Super Center, we are on our way home. She is asleep with a smile on her face, I just heard. This is a day I don’t want to ever forget. This is a good day.

No more

2004-10-23T16:10:00.000-05:00

She made a choice today, entirely on her own. We will no longer draw blood twice daily to check her counts. We have been doing this for weeks, to see where her counts were, to see what blood products she needed, to see how well her body was handling intense chemotherapy.

No more. We will no longer check to see what she needs to sustain her. We will no longer keep records of her Hg level, rbc, wbc, B-rubin, etc. We will no longer race against the clock to make sure she gets the proper bag of platelets so she doesn't bleed to death. No more. That is what she said. No more. And so it will be...

Resistance

2004-10-20T21:08:00.000-05:00

Just when we think the end is coming in the next breath, she surprises us. Maybe I am not clear, I think I had better backtrack. Last night (or early this morning), Mom was in pain, horrible pain. Her breathing was erratic, her hands were clenched around her sheet, her eyes were not focused. I really saw the end in sight. We gathered around her, knowing she didn’t want to be alone as she left us. In a matter of moments, it all changed.

Fast forward to this afternoon. She is doing much better, we are urged to go out and grab a bite to eat. While we are eating, we call home to find out how she is. There is no answer. We call again. No answer. We begin to gather our things, fearing the worst, calling once more. We call cell numbers to nurses. We sit stunned, not knowing what to do, yet knowing the entire time.
Finally a voice is reached on the other end of the phone. It is a one-sided conversation that we can hear. We all breathe a sigh of relief that my father seems to be collected. Then I hear him say "YOU ARE WHERE?"

It seems my dying mother convinced her nurse to take her for a drive to visit the Grand Falls, a favorite place of hers. Here is a woman who can’t withstand the weight of blankets on her as it brings on massive amounts of pain, but she is out cruising in a car over gravel roads. How am I supposed to understand this?

We drove out to meet her. She was napping in the car when we met up with them. When she heard our voices, she opened her eyes and smiled at us. I have never seen her so happy. She kept reaching out to touch me, saying "my family" over and over. She was thrilled to be outside again. I was thrilled to see her smile. She was exhausted and we left shortly after to return home. The entire drive home she mumbled things, incoherently about "got out," "my family," and so on.

Once we got home, she was so tired she didn’t wake as Dad carried her into the house. We got her settled, and she was just worn out. We all gathered in the kitchen to quiz Caroline on what really happened. Then we heard it. A scream that will echo in my head for as long as I live. We raced to her, only to find that she was laying on her side just as we had left her, only now she had a look of terror upon her face, not the peaceful one we had left her with. My eyes quickly did an assessment: oxygen? Check. Arm propped? Check. Blankets arranged so as to not cause pain? Not check. I then realized something was terribly wrong. Her blankets were in disarray, but the cath. tube was . . . WAIT. Where was the cath. tube? It was hanging from the bed, not where it should have been. She had taken it out. She had pulled something out that was stitched in. When does this end?

Fighting

2004-10-19T19:14:00.000-05:00

Today was horrifying for all of us, especially for my mother. Many things have fallen into place while I was back in Germany. Arrangements have been made, routines have been set, certain guidelines have been put into place. I am no longer a primary caretaker, and that role has been filled by my aunts. I am grateful for this. I know how hard it is and am very glad that they are here to help take the large part of her care.

While I was gone, her organs started to show signs of decreased activity. This involves all organs but the main focus is upon her kidneys. She went thru a rough round of dialysis in the early spring, and we have kept an eye on her levels since that point. Sometime while I was away, it was decided that the best thing to do would be to place a Foley catheter line (better known as a cath. line) in order to decrease her discomfort. We knew this would not be an easy thing to do as she is a fighter.

She didn’t prove us wrong. She fought hard it enough that it took all of us to hold her down. Her hatred for this medical intervention is very evident. She has attempted to pull it out every change she has had. Watching her like this is more than I can handle. She is fighting now, for what I don’t know. I don’t know what she is fighting for. Maybe that is the hardest part right now, not knowing.

While I was back in Berlin returning to come here, my father called each day to keep me posted. The night before I was to be on flight I finally got the courage to ask him how long. I expected to hear weeks. We have been here before, touch and go situations, I figured this was the same. I barely heard him when he spoke what I didn’t want to hear, "days Punkin’, days." I couldn’t fathom what he was talking about. I had just seen her a few days before, how can anyone change that much? Now, I understand.

Nightmare unfolding

2004-10-19T00:15:00.000-05:00

This past week, I received a call from my father that simply said "Your mother just signed herself into the hospice program." My heart was broken the moment I heard that. I was to be back in the U.S. on Monday, but in my mind I had already started to make the arrangements when I heard my mother’s voice on the phone. She sounded weak and yet strong, tired and yet refreshed. Her voice came through the phone lines clearly, "Do not come home early. Be with your daughter, hug your husband, we will see you Monday."

Now, if I have learned one thing in my years it is that when my mother speaks, everyone must listen. I pleaded with her to make sure of her choice. She was firm in her words. So I stayed, preparing myself for the re-entry into a nightmare I thought I would never find myself back in again. I went thru all of the motions, packing up my child to make a continental trip alone, kissing my husband goodbye at the airport, knowing that the next time we were together would be at my mother’s funeral.

I was met at the airport after our flight by family and friends. They spent the entire two-hour drive describing in detail what I was about to face. I thought I was prepared to see her, after all, it had only been nine days since I had seen her, how much change could there be?

I walked into her new room. She was no longer in her bedroom. In the time that I had been gone, she had acquired more equipment that was designed to assist her as she narrowed her path toward death. She had been moved in the den for space reasons. I stood in the doorway for a moment, trying to take it all in. She was having problems, and this was clear. My aunt and my father were at her side, speaking softly, rubbing her arm, trying to calm her. My other aunt glanced up and rushed to me. She began to tell me that my mom didn’t know who anyone was, that this was something we just had to deal with, that it would pass.

I walked to her side, confident that she would know who I was. She didn’t even see me, she couldn’t look at me, she was terrified. I reached out to touch her and she let out a heartbreaking whimper. I sat down where she could see me and just started to talk softly to her, just as they were. After a long time of just speaking to her, she began to recognize me. It is now 6a.m. and I have sat with her the entire night assuring her that it is ok. Why do I feel as though I am lying to her?