Waiting to breath – Reese Update

We hold our breath every time she closes her eyes or tries to push out a poop, because it looks like it might be happening. I cannot believe how accustomed I have become to watching my baby girl go rigid and ashen gray for 2 minutes. And I shake my head at the number of Rx bottles and syringes on my bar counter. But we are lucky. These episodes, while unnerving, are not of themselves life threatening. And it is hard to believe that, even though I say it to myself 20 times a day.

The hard part is afterward.

But today has been a really good day. So we keep holding our breath. And soaking in every moment of the sparkling eyes and sunshine smiles that she will give us. Because we fear when it will go away, behind the fog of her medicines and the exhausted little brain that is causing all this pain.

And I just don’t know when we will be able to take that breath.