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.
Lexi Mag 
She will rock those hearing aids! I would be happy to join a movement asking AG to make a doll w/ Downs. That would be amazing. And while she has an inherent inner strength and resilience, she also has a wonderful role model in you.
Of course she’ll rock it. Look who her mom is!
That’s right. . . no namby-pamby hearing aides for Miss Abby. She will rock her hearing aides like there is no tomorrow. Btw, there are new dolls coming out that are like the American Girl dolls, but have Ds-like features. Hearing aides will be an accessory. They are not out yet–I think May, perhaps. Dolls with Downs is the company. Anyway, do not beat yourself up. I put off Ellie’s ABR (and the allergist and ABA therapy) for a long while, I just did not want another appointment. Or even more bills. I just wanted Ellie to be a kid and not always at the doctor and I, also selfishly, did not want to be hanging out in a waiting room. Plus, I was scared to know “the results”. Those bridges that we have to cross or the other shoe to drop. You are doing good. You are processing your emotions and trying to help Abby. Like you said, Abby is resilient. She will be okay and you are doing good.
How beautiful is this story.,.so many real emotions! It’s not easy to lay all of that out there. You, Abby, the whole family is such an inspiration. Your strength will get you through this journey as well! Thanks for sharing Lexi!
go ahead and hook her up with the deaf community. it cannot hurt her to have as many ways to communicate as are available. ASL is handy to know even if you are hearing. hooking her up with that is not a failure of anything.
Definitly rockin hearing aides is a must! So glad those options are available and that you were able to take a new look from a different perspective, even if it doesn’t make it easier. For Madeline’s trach collars I always special ordered stars on her because she was born on the 4th of July! The supply people thought I was crazy.
Abby will strike a pose and turn heads at every turn. As if she doesn’t already! I would be so in on the campaign for the American Girl Doll with DS. Love it! Keep trudging up that hill, Sister, you are amazing!!!!
Who would have thought I would have a hero who is little and blonde a rocks the world. Abby is truly a rock star.
Abby Rocks. You rock. Your whole Freaking Family Rocks. You got this. I have faith.
There are dolls that have Trisomy 21. http://www.dollsfordowns.org/ and hearing aides, heart surgery scars, feeding tubes, etc. I have a boy at only 15 months, but considering a boy one for him to help him with occupational therapy and dressing the person.
When we got hearing aids for our daughter I decided to go all out and we got pink ones with purple glitter ear molds. Now that she is older she chose neon green ear molds. They can be a fun accessory. They look odd on our little ones at first and now she looks naked without them.
I also thought I’d never spend money on an American Girl doll but when these came out I was so excited.
My dad still feels awful that he thought Jer was ignoring him all those years. To think it took 14 years to find that tumor, and to think what would have happened if they would have done something sooner, still makes my dad cry. But thinking about it doesn’t fix it, so you have to shift to the amazing things that will happen, just like you are doing! Abby will rock those bedazzled hearing aids! And, between all of us Magnusson’s and Price’s, Abby will have one of those dolls. I guarantee it! You just say when!
You are an awesome mom. Abby is an awesome kid. You two are very lucky to have each other. And yes, she will ROCK those hearing aides. hard.
She will rock those aids HARD. I am glad you’re finding a new equilibrium for yourself, too. It’s hard to not beat ourselves up and to not get sucked under by the emotions. I know it’s a scary bridge, but consider the deaf-blind connection now; I wish to hell someone had told me about it when Nik was still really young.
Sending you ginormous hugs.
She will indeed rock those hearing aids! I’m deaf too and I wear digital aids in both ears. I was born with a hearing loss (nerve damage in both ears).
Hearing aids are allot cooler now then what they used to be and they are also much smaller too.
You are an awesome mom!