This is another milestone to add to her journey, and it's one we haven't shared as publicly.
There are lots of statistics about kids born with rare diseases. Here's one that is pretty crippling if you let it be:
Yet, here we are, with a little girl full of zest for life and more joy than I could have ever imagined!
I will never forget when Caleb found this sheet (it's a Rare Disease info card published by Rare Genes) two years ago and comprehended what it meant. He brought it to me sobbing, asking if Abby was going to die before she was five. My answer has always and will always be that we are thankful for every second and God knows exactly how long we will have Abby.
I'm so grateful for these last five years. I am a different person because of them, and I wouldn't change a thing.
Abby's birthday is always a bittersweet day for me, with a touch of PTSD thrown in there. There are so many emotions wrapped up in this day. We are, of course, joyful that our girl is doing so well!
But this is also the day that we received her devastating diagnosis, the day we were told she would be little more than a vegetable, the day I walked into the nicu and had to ask the nurse which one was mine because I'd seen her for only 2 seconds, the day we saw those rib Xrays and knew something was horribly wrong, the day a Fragile: Do Not Touch sign was put on my daughter's isolate because they didn't know how delicate her ribs were, the day we read the death sentence that described CCMS, the day we sobbed over the prospect of losing our little girl.
So while Abby's birthday is most definitely something to celebrate, it is also a tough day for me. Tomorrow is the first time I've ever had to work on her birthday, and I'm wondering if I'll be able to hold it together. I usually spend half of the day crying as the memories flood in!
But I am SO thankful that at the end of the day, I get to come home and celebrate this precious girl's life. Thank you, Lord, for another year!