Hearing Aid Boot Camp continues. It's gotten better (it really has), but I have to be honest: there are moments when it's hard. Like, really hard. I'm a pretty patient person, but the sometimes constant pulling out (and she is quick!) makes it difficult to do any kind of multi-tasking. At the end of a long day, I sometimes catch myself saying things in frustration such as Sweet baby girl, my hair is turning gray with all this. Would you please just keep. them. in.?!!!??!? (Yeah, I call moments like that my mother of the year moments.) Bless her sweet little heart, she is just exploring what is sitting in her ear with no ill will, so I try to keep the smile plastered on my face even if I'm at my wit's end.
It's frustrating for me because I understand how essential it is for Viv to wear her hearing aids full time. Giving up or cutting back is not an option. This hearing aid stuff is where I feel most alone in my motherhood experience. It's essentially all on my shoulders, and the implications are huge. My stick-to-it-ive-ness throughout the day affects the amount of hearing and listening time Vivian experiences. It sends (or doesn't send) the message that wearing her hearing aids is important.
Honestly, I just have to laugh when I am up to my elbows in raw chicken (ew) preparing dinner and she pulls out a hearing aid and then I'm faced with a dilemma: salmonella or a little noshing on her aid until I can wash my hands and reinsert? Crikey.
So we trudge on. We celebrate and redirect and re-insert and celebrate a little more. Laundry piles up, the floor needs to be vacuumed and clutter remains unorganized. I say in my sing-songy voice Every time you take it out, I put it back in! And added to the mix as of late: We are so thankful for hearing aids! Because we are. So very thankful that technology exists to help my baby*. So the least I can do is plaster that smile on my face, keep calm and carry on.
There is a reason this poster hangs in my living room.
*Our new audiologist wants us to have a cochlear implant consultation, so that's currently in the works. I had been under the impression she would need to wear hearing aids for a year before this would be persued, but that was misinformation. There are CHARGE factors which make the CI option less cut and dry, but our audiologist still thinks it's prudent to persue for her left ear since it's a severe-profound loss.
13 comments:
The hearing aides look so nice on her little ear :O)
I completely understand where you are coming from as far as the aides go and you are much more persistant then I ever was. You are a very strong woman and mommy :O) I always let Christopher win the battle and always beat myself up about it. Then, to find out years later I was beating myself up over nothing... he wasn't even benefiting from them! Keep up the persistance on keeping them on. You are an awesome mommy and you are doing a great job :O) Good luck with the CI consult.
Imagining the chicken scenario made me laugh out loud!
Oh my dear friend, it must be so trying! You so very patient and a wonderful mommy to Miss V.
We all suffer those frustrating "mom-of-the-year" moments...you are an amazing mom !! and how cute is viv in hearing aids!
Girlfriend, you are rockin' this boot camp. I see you doing a GREAT job for Vivian. You are persevering. Praise God for your patience, your strength, your endurance as you run this marathon (definitely not a sprint, but a marathon). Viv is BLESSED to call you "mamama". :)
Much Love and Many Hugs,
Erin
P.S. Viv told me this morning that she's nominated you for Mother of the Year for 2008 and she also said that the way things are going so far you're totally up for nomination in 2009. :):) I told her you have my vote.
There are many days when the hearing aids are my greatest source of frustration. I'm so glad that they're available, but honestly! Micah outgrows his earmolds almost as fast as we can get them, and the aids are always squealing.
Have you tried wig/toupee tape? We haven't had to yet, but Micah is starting to pull his left aid out once in a while. You can get the tape at Sally Beauty Supply.
Keep us posted on the CI... Micah is severe-profound in his left ear but we've been told it's not an option as long as he's responding well to the aid in his right ear. I really need to research it independently, but that would require time I don't really have right now. Ugh -- now my guilt is kicking in.
We do the best we can!
All I can say is keep doing what you are doing. Eva is FINALLY doing better with her aid and glasses and keeping them on. She still takes them off but she keeps them on longer then before. I think its because when she is at school the put them on and she is use to it.
Good luck with everything.
Hugs,
Crystal and Eva
You are doing so great in being persistent with Vivian's aids, Hannah! The persistence is half the battle, I think, whether it be hearing aids, a CI, or glasses, and most of the kids I know with CHARGE (Katie definitely included!) have PLENTY of persistence of their own. Not sure about you, but for me it definitely helps having a competitive personality! :-)
if i had an actual trophy, i'd give it to you! :) you're such a great mommy!
and i love the poster... i gotta get myself one of those, as i don't have the patience of a saint like you do!
Love Leslie's comment about the competitive personality! Made me chuckle! The whole "ick" factor of the chicken scenario made me laugh, too! And you KNOW I love that poster! I think about it all the time! :-)
Glad Viv finally has aids to call her own... whether she wants to wear them or chew on them!
Can't wait to see what color molds she chooses as she gets older!
(By the way, is Viv a Regional Center client? Just wondering why they didn't help you pay for the aids since your insurance doesn't?)
Good luck with the CI consult - - so many things to consider there, regardless of the CHARGE Syndrome factor... then add CHARGE into the equation and it's really a difficult decision. Are they sending you to CEI?
:-) You are an amazing, inspirational mama, Hannah! Vivian is blessed to have you... so very blessed. The leaps and bounds that she continues to take are because of the way she is so lovingly and thoughtfully parented.
Hannah - you are a fantastic mom! While you may not feel it in the moment (i.e. the chicken incident) your patience and dedication are remarkable. Congrats on the new hearing aids! Can't wait to hear more information about the cochlear implant...
Happy Valentine's day to sweet Vivian from Charlie!
-Libby
Hannah, all of us moms get frustrated at certain moments....it is what makes us human. I have my "mother of the year" moments too. :) It is easy to say but, "this too shall pass." Before you know it you'll hardly remember the time when Vivian wouldn't keep her hearing aid in. And CHARGE or no CHARGE, Vivian is just demonstrating her age. Cute, awesome....and challenging all at once.
You are such a good mother to Vivian...it is so evident here. The fact that you debate between raw chicken and noshing proves that. :)
Good luck with the cochlear implant consultation. I am interested in what you find out with that.
Sara
YES. the hearing aids are SO frustrating. oh my, how many times i have wanted to cry (ok, how many time i *have* cried) with the in and out so many times a day.
but it does get easier. i may have been hallucinating, but i swear monrovia laughed when i made the eharing aid aign and got them out to put them in the other morning. she still squirms and screams sometimes, but it has gotten easier.
ALSO, you may know about these tricks of the trade: otoferm and hearing aid or wig tape. if you need an in person demo, i can show you sometime ;)
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