Wednesday, September 24, 2014

Liam's Latest Challenge

Liam had a well child visit, today.

I was able to explain things like, why his hair is so long at this point that it's unruly.

He screams and fights the clippers so hard (and he fights scissors, too, so no one wants to use them on him) that we can't bear to cut it. Also, it hides the big bump on his forehead from where he bangs his head.

Liam is big enough these days. And he's still doing so much better than he could have. After all, he gets up every morning and breathes in and out. He walks, and he even has some words. He doesn't have terrible seizures, or many of the other health problems that other kids with an encephalocele or hydrocephalus often have.

But he failed the developmental test. And in such a way that our Pediatrician wondered if he might also be on the Autism Spectrum.

Now, please don't get me wrong. I don't care if he has Autism. Whatever label best unlocks the tools that will help make his life easier, I'm all for. And there's also a significant chance that the developmental delays are due only to his encephalocele and subsequent hydrocephalus.

But I realized that I see Liam from the bottom up. I look at him from what the worst could have been. So, in my mind, he's a damn Rock Star. And everyone should just say that he's amazing. Which, I realize is not our Pediatrician's job, and yet something she likely would say if I asked her. Because she knows what could have been, too.

The thing is, sometimes I forget that the world will look at him from the top down, from where other kids his age are, and they will see how far behind he is.

So, tomorrow begins the next journey of new doctors visits and evaluations for a whole set of new ideas and treatments that might help him catch up or adapt in whatever ways will be helpful. And I'm equal parts sorry that he needs them, and grateful that they exist.

I don't know that I will ever stop looking at Liam from the bottom up, or being disappointed when I am reminded of what he can't do. Just like I will never stop loving him so much, it hurts, and being so proud of his ruthless determination to do the things he believes are important.

Parenting is full of these push-pull moments. I will do my best to keep embracing gratitude. That said, sometimes it blows that he has to struggle so hard.

Parenting isn't the easy gig we were promised, is it? Still the best job I've ever had. Thanks for sharing it with me. And if you liked my blog, please click the link below which registers a vote for me, would you? Thanks. You're the best!
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