Doctors told them their baby would never XYZ. But they didn't believe them. They refused to give up and now their child can XYZ!
This narrative is told over and over again. If you're watching for it, you see it everywhere.
I watch for it. I used to breathe it in, let it wash over me. I told myself: That's gonna be me one day.
Even still, I want it so badly. I want Malachi's disability to be conquered by hard work and determination. I want it to be just a matter of how much I refuse to give up. If only it could just be a matter of how much I refuse to give up....
But what I'm realizing is that whenever that story is told, it is never the whole truth. And, even more surprising, for every one of those stories, there are hundreds of parents out there who are trying just as hard and never giving up but yet somehow not getting amazing results. Those stories never get told, do they? Who would want to hear that story?
Malachi is three years old this week. If I am totally honest, his gross motor is nowhere near where I thought it would be by now on his first and second birthdays. He still can't sit by himself, let alone walk. If I can blot out from my memory the times when I thought he would have progressed so much faster, I can be pleased at the progress he's made in recent months. He is doing very well with sitting in a chair and I can even prop him up on the floor for a quick second or two without worrying too much about him falling over. His manual dexterity is improving greatly and his iPad skills are impressive. He is self-feeding quite a bit and though the quantity and variety of meals are a daily struggle, he is eating a lot more than last year. His speech is fairly clear and age-appropriate. He has pretend play. He is very funny. He can sight read lots of small words. He really loves numbers, letters and languages. He can count in Spanish, French, Russian and Japanese and constantly asks us to translate things.
Yes, there are a lot of things Malachi is very good at. There are a lot of reasons for me to be proud of him and proud of whatever role I've played to get him here.
But that's where it gets murky. How much credit do I get for what he can do now? For example, was it my hard work that instilled a love of numbers in him? I don't think so. I think that in the chaos of an injured developing mind he just really finds comfort in predictable sequences. People tell me: no, you're a great mom, that's why. But that makes me feel squeamish because the other side of that coin is that if it was my hard work that made that happen, then why is it that every time I apply myself to the areas he struggles with I come up empty-handed? Am I just not trying hard enough? Have I — God forbid — given up?
I'm coming — round and round, like a buzzard circling — to believe that there is nothing I can do to fix Malachi. I come to this realization a lot, but it always butts up against that other narrative about the mom who never gave up and now her kid is OK.
It's so hard to know which obstacles are put in our way to overcome and which are our crosses to bear.
If there is an undeniable good to come out of this situation though, it is this: I have been humbled. I know now how little control I have on the world. I know now that life is not about checking off the right boxes, that my effort alone will never be enough to make the world right.
I know that even if Malachi does walk one day, it won't be because of anything I did. It won't really be because of anything Malachi did either. There are some kids who just don't ever learn to walk and it has nothing to do with whether or not they or their parents gave up. Then there are some who, it turns out, do.
Call it God. Call it fate. Call it whatever. But don't call it me.
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Need a baby shower gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs.