Life Gets More Complicated

There’s a book called Far from the Tree. It’s about children who are very different from their parents, as in they have dwarfism, autism, etcetera. There’s a chapter in the book about deaf kids, and I learned from the book that there was a deaf activist who believes that deaf children who should be taken away from their parents and given to deaf couples to raise to ensure they’re be part of “deaf culture”.

I was reading this the day after RC had been diagnosed with hearing loss. It’s already hard to feel confident with a newborn, let alone with a child with disability. Then you read that some people think that your child would be better off with someone else, and it’s like a punch in the gut. I’d been really brave about it, but that was the one time I cried about it.  He was sleeping in my arms while I was reading, and I apologized to him. Looking bad, it seems stupid. What difference does it make what some activist thinks about my ability to parent a child with hearing loss? I haven’t bothered worrying about it since.

My son’s not totally deaf. He has mild to moderate hearing loss, and I know how that sounds. You hear the words “mild” and “moderate” and assume that it’s no big deal. But he has to wear hearing aids, and he will for the rest of his life. The aids correct his hearing to where it’s almost normal, but he sometimes has trouble in crowded places or when someone’s talking to him from another room.

I guess I shouldn’t have been surprised that his hearing wasn’t up to snuff. He failed his newborn hearing test and failed it several times after that. They had told us at the hospital that he might have amniotic fluid in his ears and that might be what was causing it. And we clung to that belief right up until we went to an ENT doctor and he told us there was no amniotic fluid in his ears.

We still didn’t think anything was wrong. I would shut the door loudly to see if the baby reacted. I stood behind him and clapped my hands and had my wife watch to see if he blinked. I read books to him like everything was fine. We had an appointment coming up with an audiologist at Children’s Hospital of Philadelphia, and we just assumed we’d been in and out in 20 minutes, and then we’d get on with our lives.

When the audiologist gave us the news, my wife started sobbing. For weeks she blamed herself for his hearing loss, thinking that she ate too many hot dogs which caused the microscopic damage to the hair in his ears. I tried to focus on all the information the audiologist gave us on how to help him. He was obviously never going to have completely normal hearing, but with hearing aids we could get pretty close.

I don’t have a dramatic video of my son getting his hearing aids for the first time. I always watch the ones on Youtube, and they’re very cute, but it wasn’t nearly that dramatic. It wasn’t like a whole new world being opened up for him; it was just making the sounds he heard a little clearer for him. The audiologist suggested a cap to keep him shearing aids on and to can keep him from trying to take them out. That’s why almost picture of my son from the first two years of his life make him look like he’s going to hop in the spirit of St. Louis and fly across the Atlantic Ocean.

We tried learning sign language, and he used it when he was a baby. Once he learned how to talk, he stopped showing an interest. If he decides he wants to learn, then I guess we’ll do our best to learn it, but for now, he’s just not interested. Sorry, Far from the Tree activists.

He’s always been pretty enthusiastic about wearing the hearing aids, and he doesn’t seem particularly bothered that he as to wear them while others don’t. Of course, this could all change in the future. I’m sure when he’s a moody teenager, he might give us some problems. But so far, so good. The hearing loss seemed like such an enormous obstacle at first, and now it’s just a tiny part of his life. I thought once we got a handle on the hearing loss, everything would be smooth sailing. However, shortly before our son’s third birthday, our lives went to hell.