Sunday, October 16, 2011

why.

Soon after my last post we finally got the official word from Pittsburgh.  They called to tell us that after reviewing Kyle's case again they sadly have nothing to offer him.  They told us at this point all we can do is keep him as comfortable as possible and enjoy our time with him.  I have to say the conversation was short, poor Jack had just gotten home from school and we were having a snack together...the next thing he know his Momma is bawling and speechless.  I called Mark at work and could only whisper the word Pittsburgh...

After meeting with his Drs here we know that this was probably coming but it still hurt deeply.   I will admit I pleaded with the transplant coordinator, asking her what I was supposed to do...wait for an infection to take his life...continue to watch him suffer with chronic pain and exhaustion?  As his Mother how the hell do you do that?  After 7 years of fighting for his life I'm supposed to sit back and wait.....how?   I'm his Momma, I fix everything. 

I guess the worst part of the day was Alex coming in and asking me what was going on.  After telling her we would not be traveling to Pittsburgh her face completely fell and she asked me if her brother is doing to die?  How in god's name do you answer that?  It was almost as painful as the phone call....for Alex's privacy I won't get in to our entire conversation, please know we are getting help for our kids and I do appreciate all the emails with suggestions for them..

We are so heartbroken, but we are not giving up.  For now we are keeping our Kyle comfortable, we are exploring some options to keep him even more comfortable while trying to listen to his wishes of no more surgeries...His care is increasing and I'm finding it more and more overwhelming...I'm juggling with trying to be his Mom and his nurse, there are days where it hurts so much..I want to hold his hand not hold him down. 

We leave for our Make A Wish trip to Disney in less then 2 weeks, we are so nervous but incredibly excited...praying our sweet boy can enjoy all the things he's been talking about for the last 2 years. 

XO
K

12 comments:

Lauren said...

Kate-

Thank you for sharing the latest. I don't even pretend to have the slightest imagination for how hard these conversations have been or to have any answers to the difficult questions you are facing. My heart is with you guys.

I send hugs and love to you guys daily-

xoxox
Lauren

Dorothy DiSanto Vacca said...

Dear Kate,
Although I do not know you personally I feel connected through all your postings about your courageous son Kyle. He stole my heart the first time a read about him, I can only imagine the pain you go through every day.
All I can offer are prayers for all of you to find the strength to carry on as you have consistently done.
May you enjoy your upcoming trip, may God watch over & protect you all of you.
Blessings & love.

Lori Ann Stephens said...

Dear Kate,

That must have been a tremendously difficult post to write. I'm so sorry. You have every right to every feeling you're experiencing. You don't know me, but I've been following your journey for a long time now and have read every post. I think of you and Kyle and your family frequently. Please remember that strangers are wishing you as much peace as possible in these dark, awful days. We only have one go-round to be our best in this world, to make the world a better place for other people and for ourselves. You are doing a damn good job of it. Hugs from Texas.

Shari said...

Kate:

This post broke my heart Kate. You are still in my thoughts and prayers and always in my mind.

Shari

Mrs. Miller said...

Kate,

Praying that Disney will be full of wonderful memories!

Erin

jenelle said...

My heart aches for you Kate. I will continue to pray hard for Kyle and for all of you. I hope that Disney is all that Kyle wants it to be and more. Love you guys! Huge virtual hugs headed your way. <3

CARLOS.BERL@GMAIL.COM berl said...

Kate and all the family
We come to this world to do a job of self learning and teaching, Kyle has done his job in a very short time(meaning he is a very advanced soul),and he is prepared for something much better than what we think we have here. His teachings and legacy will live with all the people who have had the pleasure of knowing him and the family. Enjoy him the most this coming weeks.
Love to all
Carlos Berl

Page said...

Kate, thank you for taking the time to update. As you well know, there are no words for this...

Sending all my love and strength your way.

xoxoxo

Krissy said...

From one sad mommy to another, lifting you and your son up in prayer.

Talon's Mommy

Sharlene said...

Kate,

There are no words for this....and all I can do is say we are lifting Kyle and all of you up in prayer! Thank you for updating. Much love, hugs, and strength to endure each new day!

XOXOXOXOXOXOXOXO
Sharlene

MJ said...

I am so sorry about this heartbreaking news. I know that you are giving your beloved children the love they need to get through this. I can feel your heartache in the words you write.

I am praying for Kyle and his wonderful family to be able to enjoy Disney World.

SBice said...

Dear K-

I ran across your site from a Tweet Giada DeLaurentis RT'd today. I cannot imagine the pain or heartache you are going through - but I wanted to let you know you are an INCREDIBLY brave woman. You are doing the best you can for Kyle. I hope you are enjoying Disney and I will pray for you, your husband, other kids and especially Kyle. God Bless you.