Don't get me wrong; I'd like to sleep until noon every day, if I could. Instead, I wake up between 5:30 and 6 a.m. and spend 15-20 minutes getting myself ready for the day. Then, I get to wake up our household, one beautiful face at a time. Jay, then Katie, then Maggie & Lainie, and Natalie is usually last. And with each child, I say a little prayer of thanks to God that we get another day with these exquisite creatures.
I will never forget that drive to Kansas City, while Lainie was being flown there. We had no idea if she'd survive the flight or, if she did survive, what we'd find when we got there. I spent a good part of the drive praying, begging, pleading God to save my baby, to please not take her away from us. I promised that we'd take her however we could get her, knowing, expecting that she would have severe brain damage. (After all, her oxygen stats were in the 70s for a long long time.) I think, every 3rd or 4th beg, I would add "thy will be done but please oh please let thy will be to keep her on earth."
I remember arriving at Children's Mercy, meeting my uncle in the PICU, waiting to get back to see her, shaking with fear and exhaustion, gowning up as we entered the strange room, and THANK GOD, seeing Lainie start fighting the machines as soon as we started to talk. It gave us hope that she was still okay in there, that she recognized our voices, even in her coma.
And we've been thanking God ever since. For every word spoken, sign learned, progress made, step taken...and for every morning we've been gifted.
I still get scared, worried about what health curveball Natalie's going to throw us, worried about how Lainie will manage this flu season. I've talked with another mom, whose daughter is equally fragile. And I've adopted her words:
We can't know what the future will hold; we can only enjoy each and every day we've been given.