But he looks so “normal”…

Today in PJ and Bo’s music class, our nanny commented to me about how much another woman’s baby was “chatting”. Bo will be nine months on Friday and this little girl was only about six and a half months. I explained to her that that’s one of the things that Bo just isn’t following along the “typical” path with. He has no consonant sounds; and aside from the occasional grunt or coo, along with the rare but precious giggles we hear, I usually refer to him as the “strong but silent type”…

I have very mixed emotions about hearing people say how “normal” he looks or how “you’d never know by looking at him unless you knew about what happened”. I feel like that should be music to my ears, but it’s just not – at least at first.

Obviously, all Scott and I want for him is to be as “typical”. As any other kid. Sure, we’d love for him to be a professional baseball player, a Nobel Prize-winning physicist, or the President; but at this point, we’d settle for a kid without leg braces or a limp that can hold an intelligent, intelligible conversation without drooling, and has decent handwriting. Kids, and adults, can be both judgmental and cruel. My eyes fill with tears each and every time I think about anyone shunning my sweet boy because he walks or talks — differently. Will he have friends? Will he live a life knowing he’s different and feeling just outside of society as a result? Will he find someone who loves him to spend his life with and start a family with?

Those are the reasons I so desperately want him to look, to be, and to feel “normal”.

But not yet…

Right now, I want people to look at my charming, happy, easygoing baby and know just how hard he works every single day of his life. I want them to know that he has therapy five times per week during which he his put through a grueling workout the majority of us wouldn’t last through. I want them to know that he does all of this without even a whimper, a frown, the tell-tale lower lip jutting out in what my sister-in-law affectionately deemed a “Boo Boo Face”. No, this little trooper does the equivalent of boot camp with a sweet smile on his face – occasionally an outright gummy grin. He is the hardest working human being I know and I am in awe of his strength, his endurance, and his spirit.

And I want people to know this. I want them to know that none of this comes easily or naturally for him. I want them to know that he is dragging himself across the floor in a modified military crawl despite the fact that he has no knowledge that the right side of his body even exists. That when he is happy and wants to clap, he just slams his little left hand against something in excitement and has no realization that it’s his own right hand he’s touching. He’s just happy and wants to express it like any other kid.

A few months ago, I was waiting in Bo’s pediatrician’s office for his six-month checkup and was feeding him a bottle. A lovely woman was also waiting with her teenage daughters and saw Bo lounging comfortably in my lap while I gave him a bottle. She smiled and made the comment, “Rough life, huh?”. For some reason, it really struck me. I HAD to tell this woman that he DID have a rough life and that he worked so, so hard everyday. Before I knew it, I had rattled off to this poor, unsuspecting (and now shell-shocked) lady exactly what he had been through. She was gracious and sweet about it and earnestly wished him well as the nurse called Bo’s name to see the doctor.

I’m not sure why I felt the compulsion to fill this woman in on Bo’s life and hardships, but perhaps that’s the dichotomy of being the parent of a Special Needs child. You want with all your heart for your child to be as close to “normal” as they possibly can, but at the same time there is a desperate need to make sure that they receive the credit they deserve for all the hard work and sacrifices it took for them to get there.

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