Thursday, April 2, 2009

Tiring Week ... but He's Bilateral!

Our binky boy is now bilateral! He has both his "ears" turned on. I wish I could type this all with more excitement and happier emotions. It's just not there, not right now. Don't get me wrong, I feel so blessed that we live in today's age where my child has the opportunity to take advantage of such wonderful technology; I thank God everyday for Aiden and what he's brought to our life. But truth of the matter is, this week has brought tears, struggles, and heartache.

I'm sure a lot of it has to do with the lack of sleep I've had all week. Aiden's been sick and not his usual animated self. At his activation, his audiologist checked his ears and they were all clear. That night his fever spiked to 101. I blamed it on teething, because his fever went away. When nighttime fell again though, we started the sleep fight all over and after today's dr. appt. and 101.8 fever, we confirmed the ear infection made it's way through.

Anyway, for the first time in a long time, I cried. I cried seeing all this equipment on my son. I cried thinking about how I shouldn't look at his CIs as all this "equipment" but as the miracle they are that allows my son to hear my voice and all the beautiful sounds this world has to offer. I cried at the fact that as long as he wants to hear, he will always have to wear something on his ears ... this isn't a quick fix ... this is for life. I cried because my son is deaf and I hate it.

Not really.

Well I do, but I don't. Clear as mud? Of course I wish Aiden didn't have to go through all of this. Of course I wish Aiden didn't have to wear all this "equipment" to hear, having to crawl around with all these wires hanging off of him, ripping off his "ears" as he tries to crawl, me constantly behind him putting an "ear" back on. Of course I wish that I knew that he was going to be okay and that I could protect him from kid's mean words and adults staring, and all the therapy, and appointments, and hard work he's about to go through for many years so he can learn to listen and speak. Of course I wish I could hear Aiden babbling, saying mama and dada, and nonstop chit chatting that one years old do, when all he does right now is grunt and moan. GRUNT and MOAN. He was babbling more with his hearing aids. Every once in awhile now he lets out a mixture of sounds and I just savor the sound of his voice. SAVOR EVERY BIT OF IT. But it's very far and few in between right now. Of course I wish we weren't back to square one again.

Of course I wish AIDEN WASN'T DEAF.

But he is.
and it sucks ...

... at least for this week. and maybe next. I truly haven't had a moment like this since this day just a short month and a half after we found out Aiden was deaf. I think I've just been going so nonstop focusing on preparing him (and us) for the CI world. Staying positive ... moving forward to our new world. I have to remind myself, it's okay to have days (or multiple days in this case) like this. Obviously there's no changing who he is and honestly ...

I WOULDN'T CHANGE HIM FOR THE WORLD!

I truly wouldn't, except that he would be able to hear. Honestly. Yet I know he is who he is and he's brought so much to our life. God blessed us with three beautiful children, and for some reason, chose Aiden's daddy and I to raise each of them. So even with all my tears, all my sorrow, all my wondering why, I am so happy he has blessed our lives. I know he's going to be okay.

Just watch. His personality, his determination and his fight (that is fighting mom trying to put on those damn processors on his ears ... man it's such a fight) reminds me everyday-this kid's going to be just fine. It's just been one of those weeks.

Here's his left ear activation video. Here's my baby ... my deaf baby listening with his left ear for the first time. (turn off the music on the right. And sorry about the wobbly video taking ... I don't have a steady hand like Aiden's daddy when it comes to video cameras!)

I am having trouble with Overstream to caption this right now. There are only a few beeps here and there and then at the end, Aiden's daddy is talking to him about the pop up toy as we watched for voice responses.

11 comments:

Lucas'Mommy said...

Hi Tammy! First, I'm sending big *hugs* your way. You wrote: "I cried because my son is deaf and I hate it. Not really. Well I do, but I don't. Clear as mud?" I just want to tell you yes, that it is perfectly clear as mud. I get it, your blog friends get it. It does "suck", but it will get better, and he'll be babbling again before you know it. Hang in there!

Mom to Toes said...

Thank you for sharing this, Tammy. It makes me feel much less alone. Sometimes I still feel so isolated. My "real life" mom friends see Erin and how normal she is and they just don't understand that sometimes I still have moments where I am so, so sad. Because it really sucks that she'll have these things on her head her whole life. And that, while there isn't a single door that is closed to her, realistically, there will be limitations on her choices in life.

Yes, I feel blessed for the technology. And I know it could be so much worse. And I have no real reason to complain. But it still f'ing sucks sometimes.

Hugs to you!

And, FWIW, Erin stopped babbling right after activation, too. It is pretty typical for deaf kids to stop babbling at some point, usually around 12 months of age. His little brain is busy processing all this new information - so he's just a little too occupied to bother with talking right now. But he will - it will happen before you know it.

But I'm sure you know all that. ;-)

Leah said...

I wish you were here so I could put my arms around you. Don't be so hard on yourself, you and Mike have been through soooo much. Allow yourself to go through your emotions, even the sad ones! I will continue to pray for your strength for each and every new day! Omg! That hair! I love his curls in the back. He has grown up so much, what a big boy! Don't forget....tell your troubles how big YOUR GOD is!!! We love and miss you!

susannah said...

i have to say tammy that i swear i could've written almost the same exact thing. i get it. i totally get it. this week i felt so similar. then today a very well meaning friend (after i had explained how the implants worked, etc. it was their first time seeing monrovia with them on since activation) said, so you can still be as loud as you want at night, right? that's great! i wanted to punch him and say, "you know how i would kill for her to wake up to sound?" but then i g right back to thinking, i love my daughter so much, and her deafness is part of who she is.

anyway, i get it.
thanks for sharing.

Douglas said...

Hi...I'm Douglas, Diezel's brother. (INSIGHTS OF A MOM OF TWO IMPLANTED BOYS) We struggled to keep Diezel's processor behind his ear and Diezel struggled to make sure he got it off as fast as he could after we put it on. When Mom got the plastic thing that clips the processor to his shirt, that was the end of the struggle. The only time Diezel's head piece is off is when it gets caught on something. That little clip has sure made life a lot easier for Diezel and our family. I think if you got a couple of them for Aiden and used them instead of putting the processor behind his ear I think Aiden would like it better. I'm comfortable wearing the processors behind my ears, but my ears are bigger and they don't feel heavy on my ears like they probably do on Aiden and Diezel's ears. Diezel is starting to talk and he likes to listen to music with me.

Danielle said...

Hey Tammy, I wanted to say HANG IN THERE!!! I got your comment on my page about the walk4hearing and yes if u are in NYC that day and time PLEASE JOIN ME TEAM we would love to have you and I would love to meet your precious son. PS-- Next week will be a better week for you all.

Smile-Hugs,
Danielle

Ben's Mom said...

Tammy,

I know exactly what you mean. Thank you for sharing what you are feeling. Hang in there. It is a lot to deal with right now but it does get better and it will very soon.
Let's try to meet up soon.

Rachel @ Cochlear Implant Online said...

Hi Tammy,

As someone who grew up with cochlear implant, I will tell you that I cannot imagine where my life would be if I was born with normal hearing. Being deaf and having cochlear implants opened to the doors to so many unique opportunities. One example is traveling throughout the world to meet various cochlear implant users including in Australia, New Zealand, and Italy (http://cochlearimplantonline.com/site/?p=345). I might meet even more this year in Greece and France. This past weekend, I was at Cochlear Celebration where I had the time of my life, and you can see all the details on my website. Also, having cochlear implants brought me some very special friendships such as my wonderful friendship with Elizabeth Boschini. My mom can also attest that as a parent of two children with cochlear implants. Some of her best friends are parents of cochlear implant users. I also have always felt that being born deaf and having cochlear implants made me a unique person.

Yes, it's true that we do have to go through therapy and work hard to learn to hear and listen, but once I was done, I realized that it was just one small part of my life.

Also, I have to say that your son is very fortunate to have been implanted at the age of 12 months because he will be done with therapy much sooner than I was. Because I did not receive my first implant until the age of 2 and a half which is very late by today's standards, I was not done with therapy until I was 10 years old. Most children who are implanted at the age of twelve months and younger are done with therapy before they start kindergarten.

misskri said...

Hi Tammy~
I think, no, I know that each one of us "CI Mommies" have had days (or weeks) like what you are dealing with. Some days I cry when I see Thomas enjoying music and dancing around or when he yells at his older brother for making tiny, annoying sounds.
Other days I cry and worry for Thomas and wonder about his future ~ thankful for the miracle of cochlear implants but also hate the fact that my son needs them.
Aiden will get to the point that when one of his coils falls off he will find it himself and put it back on. I remember following Thomas around flipping his coils back on all friggin day. Coils falling off, processors falling of the ears, for the first several months he wore the entire processor pinned to his shirt. I found it much easier than trying to shove anything around his ear. It wasnt worth the fight.
My hugs to you ~ it does get better!!!

Val said...

love him! Brook had an ear infection we found out after she was stimulated on her second ear. We just took off the processor, went back two weeks later when she was clear and turned it back on w/a fresh map. He'll be fine, it's just draining having all that emotion and then a small set back, but it's temporary...that little man will be back to his old self in no time and one day, just one day, you'll be saying..."Watch your mouth young man!" when he says his first curse word, lol

Tiffany & Tristan said...

Be encouraged Tammy, God has many great things in store for precious Aidan and your family. I love you guys so much and it is perfectly fine to have down days, we all do! Kiss that baby for me. :)