I put a status up on Facebook that gave a rundown of Abby’s surgery results. I said that her hearing loss is permanent. My friends, as they usually are, were supportive and kind. My favorite comment of all was this one, “Since everyone else is sending you loves, I just wanted to let you know that hearing aides can be bada**–just like you Lexi. When Andy got his hearing aides, we decided that some mamby-pamby flesh-colored mumbo jumbo wasn’t going to work for us. No–we owned it and have gotten BYU colors, camo, and bright orange swirls. Our niece, on the other hand, has pretty pink. Abby is the cutest little thing, and I’m sure she’ll rock those hearing aides!!” And with that, Stephanie Meredith changed my whole thought process about it.
I’ll be honest with you. Up until that point, I had been pretty sad about her hearing loss. I’ve been a little angry with myself for not getting this taken care of sooner. We know what we’re dealing with now, but I still can’t get her in just to get the molds for her hearing aids until MAY. I’m not just angry with myself because this means a couple more months of too-loud Yo Gabba Gabba, though that rage is there, but also because Abby isn’t talking. She isn’t talking because she can’t hear much. Her hearing test at birth was normal so I thought we were safe. It wasn’t until her Early Intervention team approached me saying, “Look, when I crinkle this paper over by her ear, she doesn’t turn towards the sound. She should do that. She should also at least be babbling. She’s not. I think there’s something wrong.” I’m mad at myself for being pissed that this is just another specialist to add to our list. That I’m so selfish that I’m angry about more appointments and not just because my daughter has something else she has to work around to make progress.
It’s a mixture of emotions, to be sure. But Stephanie’s comment helped me to see that when we forget my own selfishness, when we focus on Abby, who I should have been only thinking of before, it’s not really that terrible. She IS going to rock this, just like she does everything else. I hadn’t thought about getting COOL hearing aids, either. So I did a search for “cute hearing aids” and “bedazzled hearing aids.” In my searches, this popped up:
It’s an American Girl doll with hearing aids! I’ve always said that I would never ever spend that kind of money on a DOLL for my child, but when Abby is old enough where she won’t just have a strange, physically-abusive relationship with the doll, she’ll own a doll that has the same hearing aids she sports. If we start saving now, by the time she’s four or five, we might have enough money to buy her one (seriously though, why are they so expensive?). Also, they should really make an American Girl doll that has Down syndrome. Tell me how cute that would be? American Girl said that if they had enough interest, they’d do it. Do you think we have enough interest in such a thing? I think so.
Back to the task at hand. I’m processing it all. I’m trying to wrap my brain around another surgery for Abby, and the ramifications of her hearing loss. Her Early Intervention coordinator who I just love asked if I wanted to get her hooked up with the deaf and blind school. Just the suggestion made me a little weak in the legs. Not yet, I said. I still hope that the hearing aids will help enough. That even though her hearing loss is permanent, that it’s not also progressive. The audiologist didn’t seem to optimistic about that one, either. A bridge we’ll cross if we get there.
I hate these bridges.
Abby’s surgery for her laryngeal cleft is complicated and takes about three hours. He said it might help with her aspirating, which would mean fewer bouts of pneumonia and possibly going off the liquid thickeners. If the surgery is anything like this one, she’ll rock that, too. Because that’s how Abby is. And I don’t think it’s just because she’s a little kid or even because she has Down syndrome. I think it’s because she’s naturally resilient, mixed with a heavy dose of tough love from her adoring brothers. Abby is super tough. She smiles when she’s sick. She smiles when she’s in pain. She doesn’t just embrace life, with all that comes with it, she charges at it with a fierce determination to not just overcome, but to achieve her very best.
She makes me proud to be her mom. She’s teaching me to rock it, too.