Ashley's Story

She will leave fingerprints all over your heart


In a moment

Still today I can be transported back in less than a moment to the darkest, most frightening days imaginable. It seriously takes only a moment to make my heart ache, my eyes sting, my pulse race. How can a memory become so physically real that it causes changes in my breathing forcing me to sit down, be still, and just stare?

I'm doing some purging this week, cleaning out, going through things that I haven't touched since coming home all those months ago. In the process of simplifying and trying to main stream Ash's very complex life I stumbled across a manila envelope on the top shelf of her closet. I opened it up and was immediately captivated by all the words I found inside. I wish I could be one of those moms who just go with it, don't need questions answered, and just accept what is to come...but...I'm not. I want notes. I want labs. I want surgical reports. I need them. For my own sense of understanding as I try to come to peace with what has happened in her life. The words on the page drew me in and took me back to those dark days. I could feel my hands shaking as I turned page after page and read the surgical notes from those days. It was so frightening to live it with her. Its still so frightening to think we have to live days like those again.

I hate having to remember where she's been. In spite of how far she's come and how well she's doing. I guess its because I know the pain of where she's headed? We've done it before. Lived it. Barely survived it. I can't wrap my mind around being there again. I simply can't.

In so many ways life with a central line is easier for us to live than life with a transplanted bowel. I know it sounds insane, but we are so comfortable with it, so used to it, so ok with it. If ONLY she had more access sites. If ONLY. If she did I can promise you that it would be YEARS and YEARS before I ever even consider another transplant.

Each has its worries and concerns, but with one I at least have some small role in prevention. Infection vs. rejection? At this time in her life I prefer to battle the risks of infection vs. the risks of rejection. TPN dependence vs. organ rejection? I think its easier on this side of it to second guess our decisions, but if I had only known the pain, the fear, the struggle, I think I would have fought harder in those early days for Omegaven and skipped the transplant all together. We just didn't have time We ran out of time too soon.

I don't think about these things as much as I did when we first came home. I have learned to live and to allow her to live without battling the worries on a daily basis.

If you asked me to advise another parent just beginning their own journey I'm not sure I could lead them down the path of transplantation. I'm just not sure I could. Although I know its the reason my sweet Ashley Kate plays just feet away from me now...I wonder if there could have been another way that allowed her to skip all the struggle? I suppose I'll never know, but someday I hope to lay my head down at night and not have to wonder if we should have done it another way.

Funny how it only takes a moment to bring me right back to this place.


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