Ashley's Story

She will leave fingerprints all over your heart


In her own time

We received a gift in the mail last week from a dear friend. A friend who I met while in Omaha on the very first day of our arrival when Ashley Kate was transplanted. A friend who became a friend because we were both living away from home, in the halls of the PICU, while our babies were recovering from transplant. Since that day we have both watched our children go through the ups and downs of transplant life. Sat by them night after night in hospital rooms, and celebrated each time they were released to return back to their own beds. The gift that our friends sent was a blessing. It arrived on just the right day and at just the right time in our journey of transplant. As I read through the pages of the story that we received I cried. Large, hot tears that streamed down my face as if there would be no end. I cried and I cried and I cried and then I smiled. I was crying not only because of the story, but because my friend showed me by the sending of this little book that she too could see the value in our Ashley Kate and that even though she was not developmentally where the other children are at this point she one day could be. It spoke volumes to the heart of this mommy who has been struggling of late.

As much as I would like to forget and as much as I concentrate and give thanks for each of the good and positive moments in Ashley's life the words that were spoken do not disappear. I am haunted by the knowledge that the decision to give Ashley Kate new organs was not an easy one, but a decision that caused some to pause and think long and hard about her "worthiness" and about the quality of life she would have versus another child. There have been some hard days and some hard conversations between Dave and I late into the night as I try to come to grips with the facts of her development. I am hurting and I am struggling. I find myself wondering with each and every phone call from our teams of doctors if they second guess their decisions and if they think to themselves, "We told them so". Up until that day in that little office sitting around that table I had never considered the fact that Ash was going to be different and in my hurt and disbelief I made up my mind in that instant to prove them wrong. She was a worthy candidate and her life would be successful and have meaning and she WOULD BE JUST FINE. With each return and with each visit to the doctor's offices I have to repeat the same answers over and over again. No, sir she does not walk. No, sir she doesn't even crawl. No, mam she doesn't speak. Not even a word. No, mam she's not eating table foods.

While our transplant friends all around us are talking in full sentences, running circles around the doctors and eating full plates of spaghetti our Ashley Kate seems to be stuck where she was, and actually a little more behind since she can no longer speak, than the day we flew to Omaha for our evaluation and then 20 days later our transplant. That is reality and this is what I am coming to understand was the concern of our surgeons and the team who evaluated our sweet Ashley.

As I face this screen again after days of hiding from it and as my tears fill the keyboard our sweet Ashley lays snuggled under my comforter in the middle of my bed. I touch her little face and in her sleep she scrunches up her nose and smiles at my touch determined not to open those amazing eyes that sparkle with her zest for this life. As she drifts off to sleep each night across the room from me her tiny hands applaud the day that she spent here in her home where she is safe and loved and not judged by the amount of things that she can't yet do, but is celebrated by those of us who see what a miracle and an accomplishment each of her breaths truly are. She is happy and we are blessed. My only prayer, my only wish, my only "requirement" in her early days was that God would allow her to be happy and would allow her to give and receive love from me, from her Daddy, from Blake and from Allie. I never imagined that she would not speak, or walk or eat at 3 years old. My heart only knew that the tender hearts in our home desperately needed our baby to know how much she was wanted and loved.

God answers prayers. In ways I don't always understand, but He does answer. Ashley Kate KNOWS she is loved. She LOVES us back, and SHE IS HAPPY. She is not aware that she is behind or different and she does not care. For that I am truly grateful. Even when my heart hurts over her differences it never fails to be grateful.

So this morning, I say thank you to Monica, Gavin, and Gabe. You reached out and touched my broken heart and you will never know how much it meant to know that you too can see how precious our Ashley truly is. We hope to see you again and we are so grateful to have had our paths cross on this crazy, crazy road. Your right, In her own time and I pray in His. Trish


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