Ashley's Story

She will leave fingerprints all over your heart

12/20/2008

The day

I'm so excited and if I'm totally honest very nervous that I can't lay there and pretend to sleep any longer. I can't believe we are leaving today. Days like today are always hard for me to wrap my mind around.

Ash has done SO well over the last 3 days. It really is amazing and has left us all stunned by the progress her little body has made. Yet, this morning she is stooling a little higher than she has the past 3 and so of course it has my heart racing. I wonder if this will ever get easy? I wonder if I'll ever stop paying such close attention to the amount of stool she puts out? I wonder if I will ever just relax and concentrate on being her mom?

From looking at our grafts and records the best we can figure out is that Ashley's rejection had settled itself down and was on the road to healing until she the weekend she caught that little cold. A runny nose and cough sent her back the opposite way and her body slipped right back into rejecting her bowel. Once her immune system attempted to ramp up to fight off the cold it sent her body into overdrive and her organs became at risk. What a scary way to live! The smallest of colds can put us right back into trouble? I wouldn't even believe it if it hadn't happened to us.

Our room quickly changed back into a regular old hospital room last night as we carried out her tree, rolled up her rug, and took down her ornaments. Its incredible what a little bit of something special can do in here. Dave looked around last night and shared with me how much he appreciated all the little things I do for her while we are here. I listened to his words and tears instantly appeared in my eyes. I'm thankful it makes a difference. Not only a difference for Ashley Kate as she spend so many days away from our home, but also a difference for Dave, Blake, and Allie. I think it makes it a little easier on us all during these times to bring any amount of "something special" to the situation. So I sit this morning with lots and lots of clutter around my feet. Duffel bags and suit cases, stroller and car seat. Everything is pulled out into the center of the room just waiting on that rental car to pull up so we can pack our "lives" into the back of it and head home to the place we are supposed to be living them.

As excited as I am to be leaving, especially in time for Christmas, my stomach still churns with nerves. Each and every day is a new story with this transplanted organ. We have three, but its just the one(Praise God its only one) that gives us such trouble. Learning to live in the moment, taking nothing in her life for granted, and celebrating the simple things has been the biggest lesson of my life. How grateful I am for that tiny donor who gave up so much so that our Ashley Kate could live this life. Without that gift she would have been gone and our hearts would be left with such emptiness. I never want to know what that would be like. I pray God spares us that pain.

Well, its time to put this day in motion and take the first steps towards our magical holiday. How sweet it is knowing Dave and I will be traveling the next 9 hours with our tiniest in tow and on our way to retrieve our two oldest. By this evening we should be a group of 5 again, and I don't mind sharing with you that 5 is my favorite number. Its SO much more than 4.

Thank you from the bottom of our hearts for your prayers. We love you guys and wish the merriest of Christmas'. Make them special. No matter what is or isn't under that tree. Take from me, its the people around it and the time you are given with them that makes the best gifts. Talk to you soon. Trish

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