Parenting

I don't want a "new normal"!

I don’t want a “new normal”!

LM has a hearing loss.

I don’t even know exactly what to call it. His hearing is not normal, but he’s also not deaf — although I did see on this one deaf community website that anyone with any degree of hearing loss should be called deaf. Or maybe it was Deaf, capitalized. I don’t remember.

Maybe I’m coming at this all wrong. I can hear, after all. I don’t know what he’s going through, or what he will be going through as he grows up in a world around him where people can hear. What challenges will he face? How will he identify himself? Will he feel that he’s always trying to keep up in a hearing world, and it’s just too tough? Will he feel that he’s not good enough, that he’s “disabled,” that he’s somehow less worthy than people who can hear?

But at the same time, I don’t want him to feel abnormal and only able to “belong” in a closed community of other people who can’t hear. I feel like that would be limiting. But maybe it would be liberating. I don’t know.

I see so many parallels with my infertility journey:

  • No, it’s not life-threatening. But is that the only consideration when figuring out how to deal with your much-altered life?
  • “Oh, he can just get hearing aids,” sounds a bit to me like, “Oh, you can just adopt.”
  • Negotiating with insurance companies who seem to be making it purposefully difficult to find out any information at all.
  • Services that are not covered or not covered fully: IVF, hearing aids. Yup, hearing aids, FOR CHILDREN WHO OTHERWISE WILL NOT LEARN HOW TO SPEAK ENGLISH, are not fully covered.
  • Only able to relate to a small, close-knit community because no one else understands what it’s like.

I’ve received different reactions from people when I tell them that LM has been diagnosed with hearing loss. But pretty much everyone reassures me that we are — he is — going to be “fine.” I know he will be fine. Sort of. He has a life-long, permanent disability. He is going to come up against challenges you probably wouldn’t think of: How to talk to girls at a party when he can barely hear (even with aids, noisy places can be tough), how to spend a day at the beach without getting his aids wet, how to deal with teachers who don’t know how to use (or don’t want to) the FM systems they have to wear to make it easier for him to hear over classroom noise…

One thing at a time, right? You don’t need to tell me that. I’ve been here before. This is all too familiar.

I’ve also been told that this is our “new normal.” That we thought we were on a plane ride to Italy but we landed in Holland. I’ve seen videos of kids wearing their hearing aids for the first time, how their faces light up. I saw the viral photo about the dad who got a hearing aid tattoo to match his daughter’s device. It’s all so “feel-good.”

I know I shouldn’t be putting my junk on LM. He’ll come up with enough baggage on his own. I don’t need to saddle him with mine. But that said, I admit that I have been feeling more isolated. Friends post videos of their kids doing all kinds of cool things, or saying things, or funny conversations they had. I can’t have conversations with LM. His behavior is lagging behind because he can’t hear. We are not searching for fancy preschools like the other kids because we will end up in the town special ed program, or, if we’re lucky, a school for the deaf.

We are different.

I am different.

Again.

I remember how it was to drift away from my friends who started having kids when I was still struggling. To gravitate toward other “infertiles,” who were the only people who understood. There was a divide that grew with my fertile friends as we could no longer relate to each others’ lives, and as my jealousy around what they had and I didn’t grew. This won’t be the same — I am grateful for my Little Man. Nothing will change that. But I am jealous of other moms who don’t have to face these challenges.

It could be worse. I’ve heard that one before too. I was infertile — I didn’t have cancer. So I wasn’t allowed to complain.

I have, though, also been told that I need to allow myself to grieve. To grieve the life I expected, to grieve that my child (and I) will have more hurdles to come. Part of me is just keeping calm and carrying on. And the other part of me is screaming, crying, Why me? Why us? Haven’t I been through enough?

Sorry if you think I’m being dramatic. But really, you don’t know what it’s like. You don’t know how it feels to walk in my shoes.

Have you had unexpected challenges in life? How have you found the strength to cope with them?

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