A day without

Do you know what today is? Do u know where you where on this date four years ago? I know exactly where we were. I'll never forget. It's burned into my memory like so many dates have been since that one.

It's the anniversary. The anniversary of the day that a mother watched her child breathe their last breath and the anniversary of the day that this mother breathed a breath filled with hope for mine.

Four years ago today Ashley Kate received a gift. She was given a chance. A chance to survive. To live. To experience a little more than she was ever expected to.

We usually mark thus anniversary with a small celebration. We usually arrive at this date with smiles on our faces and remembrance in our hearts. It's usually a day we snap photographs of to document where she is now. Today we did nothing. We struggled with our thoughts, our feelings, our emotions. We wanted so desperately to celebrate four years, but yet we knew it wasn't what it was supposed to be. So... Nothing was done. No balloons where bought, no notes were written, no candles were blown out.

I don't know how to share how we feel. I don't think it can really be explained. Of course we are still grateful. Of course we still feel so very humbled by such a generous, thoughtful, selfless gift. It's just that we couldn't bring ourselves to celebrate anything this year. We've lost so much and yet she's still here with us so we haven't lost as much as others have. We didn't get to be in that 50% of bowel recipients who make it four years. I mean our daughter has made it, her graft didn't. Where does she fit? What do we celebrate? Four years of life post transplant? Four years of grafted liver survival although it's dying? Four years between needing new organs? It's just a tough place we found ourselves in today. Not a place I ever thought we would be in.

I think back over the journey of the last four years and I shake on the inside. The knowledge that we now posses of transplant life is dangerous. It's not filled with hope alone. Along with hope there are fears. Fears that only experience can bring to you.

Dave and I are at the mercy of so many things. We have no idea if Ashley Kate will be relisted. We are at the mercy of the transplant team. We have no idea if organs will ever become available for her. We are at the mercy of parents who will have to live out our worst nightmares. We have no idea if she can survive long enough to wait on the list or if she will survive transplant itself and all it's complications. We are at the mercy of God.

So tonight we lay our heads down, close our eyes, and remember where we've been before. We acknowledge how different it feels to be here today than it did just one year ago. We whisper prayers of remembrance and thankfulness for the family who lived this anniversary date along with us today, and we pray for the opportunity to share an anniversary with another. As painful as it is to acknowledge that fact we still hope for it to come.