Sunday, November 9, 2008

Still Sad

I wish I could say that I was one of those moms who is totally okay with Courtney's hearing loss and has accepted it and moved on, but I am not. I know she will be okay, we will do everything in our power to make sure of it. She has her CIs, she is making progress, but my heart still aches when I see her big, round, beautiful, hazel eyes absorbing the world around her. At least once a day I say to myself, "I can't believe you are deaf Little Girl."

It almost seems that the calm after the storm has hit and I am finally feeling again. We went 90 miles per hour from diagnosis to bilateral CIs all in a matter of 3months. I am getting used to all of the stares and questions (which I appreciate so much more than the whispers), but it isn't easy. I don't know if it is because she is so small and has so much equipment on her head or if it is because the equipment we have lights up?

I think it is the small things that make me sad. When she snuggles up and leans her head to "give love" the coils fall off and she can't hear us. When she doesn't feel good and wakes up from a nap upset, she can't hear me soothe her. She can't hear us come in anytime when she wakes up for that matter. If I want to rock her, the coils fall off. She can't hear the kid songs in the car because the coils fall off. Fall off, fall off, fall off!

I know that someday this daily lump in my throat will one day disappear, but for today I am still sad.


Cindy said...

I came across your blog through Deaf Village, and this post was so heart-felt that I had to comment. I'm sure that every parent who posts here has shared these same feelings. I'm also sure that listing the blessings (that you found out early about her hearing loss, that you had the means to have the surgery, etc.) isn't going to take away the sadness.

We'll be praying for your family in San Diego.

Kel said...

I'm with Cindy. I think all parents with kids in our situation have a nugget of "NOT OK!!" in them. My 8 month old doesn't have his implants yet, and he gets very little out of hearing aids... Some days I just don't have the energy to fight with them, knowing that no matter how hard we work to keep them in his ears and not whistling, he doesn't hear my voice. I know there will be challenges with the CIs as well. I'd call myself "almost okay." I look at my older son, though, and wish my younger one could have what he has - normal hearing, normal life.

Hugs to you across the miles. You aren't alone, and it's all right to be not ok.

Lisa said...

When you sat with me outside the NICU as I cried, you kept telling me that even though my girls were going to be fine, it was NOT NORMAL. And it was OK and even good for me to cry. And I have and still do sometimes even now. I can hardly comprehend how you need to still. Courtney is flourishing from your love, advocacy and parenting and you all will find a new normal, but it is still OK to cry and good to realize you need too. I love you all!

britni said...

oh...girl it was a good thing weren't together yesterday, it would have been a bawl boob session! I was so emotional because I tried to wean myself from my meds...lets just say that I am now back on them, anywho this is about you. I really don't know what you are going through, but I do know that you have a firm testimony and you can always lean on that! You have such a beautiful family. We need to get together soon, I miss seeing yall. Good luck and just take some time to cry it out! It always helps! :)

Melanie said...

I *so* get what you are saying in this post. I feel exactly the same way every day. I have no wise words for you, just know that you're not alone.

And it looks like we share a birthday! :) Hope you have a wonderful day.

mkv said...

Sending you a BIG GIANT hug...I just wish I could give it to you in person. I hope you had a wonderful birthday today. I think about you all the time! xoxo

Melissa said...

I thought I just made a post, but it didnt show up, so hopefully you dont get this twice! I do enjoy to look at your blog because of all of the GREAT process that has happened... I know that I dont know what you are going through, but I am here for you. And I know that our Savior knows your feelings, pain, and hard ships. He is there for you, pour your heart out to Him because he understands. He will comfort you and make it possible for you to endure your hard times. I miss you and hang in there! Your a strong Woman!!!!


tammy said...

I too, SO get what you are saying! The speed you have gone from diagnosis to implants is amazing and I can't even imagine how you've had time to just "breathe" this all in! We're almost 8 mths into our journey, which I think has gone by fast, yet I can't fathom doing all you have in the 3 short months you've done it in! You're like superwoman! It took me well over 3 months to even begin to truly accept Aiden was deaf ... then it started to seem to get better ... day by day. So allow yourself those sad days and mad days and all out just horrible days. But, as I'm sure you know, there are so many, many, many more happy days ... YOU ARE DOING AN AMAZING JOB!!!

jennifer said...

i just came across your blog while looking for blogs about deaf/hoh kids... and i have to say pretty much what everyone else said... even though our little harry is doing great, tons of signs, tons of words, likes wearing his aids now instead of chewing on them all the time, i still get the sneaking hope that maybe the next audiogram will say his hearing is suddenly magically normal... hang in there.

Dustin, Heather and Gavin said...

Hello Again Kohler 5!!
I stopped by to check on you guys.
Can I say with a few things I understand what your going through.
The coils fall off so much it is true. The car seat and when I snuggle with Gavin it falls off.
Maybe they should put the magnet part right above the ear so that way it wouldnt fall off as much. With snuggling, car seat or resting their heads! Have you guys tried taping the processor (two sided tape) behind the ear that helps keep the bte part on. I really like this tape that is Fashion Tape I got it at Sally's Beauty Supply. It is for woman who like to wear immodest clothing. But it is clear and works. People stare at us to all the time. People come up and ask me i tell them. I even heard his little girl ask her mommy what does that little boy have on his head. So even children notice. You guys are doing a awesome job with Courtey! Keep your head up. I know for those few times that the implant coil falls off she doesnt hear but all the other times She hears! Isn't that just amazing. 10 years ago children with hearing loss didnt have even close to the technology they now have days. 10 years ago the implant only had 7 channels now they have 22 and some have 24 channels. At least these kids will grow up and have normal lifes. It is true!! I when to a teen panel of Teenagers with implants they are doing so much with their lifes everyone of them has job where they are talking to the public! They date hearing peers! Their in Drama, scouts,ballroom dancing, band and choir. It is Amazing! They talk so well if you couldnt see the device on their heads you would have no idea they are deaf! They arent deaf they talk and listen! They are Having normal teenager lives! Remember that Heavenly Father wouldnt give you or Courtney anything you couldnt handle and if so He would provide a way out or a way to make it easier! I tell this to myself and it helps on the down days . I hope I helped you feel better. Your little Courtney is so Beautiful! God Bless and Merry Christmas!!!!

Dustin Heather and Gavin