And then I read this, posted by fellow PWS mom Ali, on her blog Diving Into the Waves:
Imagine the game of life - not the board game, real life - and you set your child at the starting point to go forth. To most children, you give them the directions and watch them proceed through each event in the journey. It's not a breeze, but at least they have the resources to aid them in each challenge. Then our kids with PWS, you put them at the starting point, except there are no directions. They can't eat properly, so getting nutrients for fuel is tricky. Their muscles don't work properly, so moving through the steps ahead is tricky. Their brains don't fire appropriately and so they receive inappropriate, incomplete, or misdirected messages about what to do next. Forget the challenges, even navigating the BASICS is tricky for these kids. But they have to play the same game as everyone else does. Our kids are freaking champions.
(You can read the entire post here.)
And I realized why those 27 milliliters were such a big deal.
I know how much work it was for Aerin to drink even that much by herself. It took days of drinking five to ten measly milliliters to get her muscles strong enough to tackle the big 27 and it will take days and weeks of small victories before we celebrate one big win again.
And my heart just grows in love for her and for all kids who have such challenges set before them. We all take so much for granted. So many blessings rain down upon us from a God who loves us so richly--and many of them we completely fail to see.
I count every one of those milliliters a blessing for my little champion.