|Malachi (left) and Jaden at about two months adjusted age.|
In the beginning, Malachi did everything better than his brother. He breathed better. He digested food better. He nursed better. He did tummy time better.
In fact, he was supposed to come home from the hospital before Jaden. The best birthday present ever was when the doctors decided to release him (unknowingly) on my birthday.
(The best surprise birthday present ever was when we showed up at the NICU that morning and they'd decided to release Jaden, too. We were like: "Really? Both? At the same time? Are you sure? Can't we just have one for a day or two to get used to it? Really, you keep him. It'll be fine. We'll be back, we promise.")
I, of course, noticed when, at four months of age, Jaden finally surpassed his brother in abilities. Laying down to sleep, Jaden wiggled his thumb into his mouth to suck it. This is something Malachi still cannot do and it continues to bother him immensely. (I know this because my mommy ESP tells me. Oh yeah, and also because he screams bloody murder until we can coax a pacifier into his mouth and convince him not to push it away with heart-breakingly unsuccessful attempts to put his thumb in his mouth, all while a suddenly deaf thumb-sucking Jaden peacefully nods off. I'm very perceptive that way.)
Today was another jump in Jaden's abilities that drove me to tears. Jaden has taken several independent steps in the last week and I thought, despite earlier worries, that I successfully passed this milestone without being sad about it. First steps, over and done with, and all the emotion I had was surprised, joyful laughter. First time a stranger asked me if "the other one" was walking yet and I was able to simply say "no" with a smile.
But today was different. Today, right before nap time, Jaden decided he was done taking a few toddling steps towards something safe. Today, he was going the distance.
He walked back and forth, with the determined, proud look of a tightrope walker on his adorable little face. Every once in a while he would stumble and then get up — standing straight up, which was also a first — and paced back and forth at least a dozen times before he finally collapsed in exhaustion.
Jaden was so happy and I was so proud of him; you could tell he really got it that he was doing something exciting. He just kept going and going while I sat there cheering, trying hard to keep my attention on him and not the other little boy in my arms who might not ever be able to do that.
I try to tell myself that Malachi's experience is just as valid. Just about everybody goes through the same developmental steps at the same time; us "normals" don't even really have a choice in the matter. Same. Same. Same. But Malachi is different. He gets to experience a whole different way of being human. He isn't locked into crawling before he can walk. He isn't locked into talking before he can really listen. He gets to choose a different adventure; combine parts of life in ways that we could never do and that we couldn't even imagine. He has a different path and different isn't bad. In some ways, it's better.
But I still hate it. I hate that his gains never seem to be permanent or indicative of future capabilities. I hate that he used to eat wonderfully and now it's a major problem. I hate that he used to be able to prop comfortably in tummy time (see picture) but now he can't.
I hate that no matter how often I hear from experts that cerebral palsy isn't a degenerative condition it sure doesn't feel that way. Not to me. Not when I have a twin who is racing ahead while his brother still seems stuck on the first of The Important Milestones.
I hate that while today Malachi can see and grab for a single strand of hair, his eye doctor says his cornea is too transparent. Which, as all the doctors have seemed to say since the brain scan, either means something really bad or it's normal. No way to know until we know.
There's never any good news, just absence of bad news. Which is something. At least there's the absence. Thank God for the absence of bad news.
Until there is some.