Parenthood is full of emotions, and, I think, parenting a child with so many struggles, even more so. Paul and I always say, the highs and lows are, somehow, much more intense. You expect, whether you know it or not, a typical child to do new things....they are constantly changing--nothing surprises you about what kids are capable of doing.
But, with Lilah...not so much. Months go by where she, literally, does not do anything 'new'--where she just 'ooches', bit by bit, closer to a goal that was meant to be achieved over a year ago. And, it is not uncommon for her to lose one skill as she gains another. New abilities are so slowly arrived upon that they are almost old news by the time she gets them--there is hardly ever an 'ah-ha' moment, if that makes any sense.
But today, we had a big one. "Ahhhhh-Haaaaa". You could see it in her face...a light bulb flashing. Quickly and clearly. And she moved. From across the room, to her Cheetos, on the shelf under the bar. And it was the closest thing to effortless I've ever seen her do (unless you count swiping her sister's paci). It was beauty.
(I would say I felt bad for the equipment guy, but he's used to me by now) So happy for her to have the tiniest bit more freedom of movement. So glad to see her body upright, stretched and tall (relatively), as it should be. Hopeful that she may gain a little independence in her ability to explore the world. But (and there is always a but), also an incredible sadness. It breaks my heart to see her in any 'contraption'....to know that it takes all that (bracing, brackets, metal, padding, etc) so that my little girl can even hold her body up in space. It sucks that everything is so darn hard for her. And there is nothing worse in the world than seeing the look in her eyes that lets me know she 'gets it'....she knows she's different and she's frustrated. I hate that the most--that she is smart enough to know her body and mind do not work as they should.
Check, check, double check.