I wish I could hear like you.....

I was driving in the car with Cormac on Monday.  We were off to do some grocery shopping.  He is always the one who will go do errands with me.  We enjoy a little alone time.  I  like to talk to him one on one and see how he is doing.  We talk about all different things.  While we were driving a song came on the radio we both liked.  I turned it up and we both sang along and had some fun.  While we were rocking I thought about what it might sound like to hear music through his "ears".  I guess I just take for granted it must sound like what I hear because he really enjoys music.  He loves to sing (and he is pretty good) and he has a good sense of rhythm. 

When the song was over I turned down the radio and said "Cormac, I wonder if music sounds differently to me as it does to you?  I would love to be able to hear like you so I know what it is like".  His response stopped me in my tracks for a moment.  He said "I wish I could hear like you".  I wasn't sure if this meant he wished he didn't have cochlear implants and wished he was like me.  He has never in his life ever said anything negative about his hearing.  He has never asked "why me?".  He has never considered himself any different than the rest of us.  Was this the conversation I was dreading when he tells me he wished he wasn't born deaf and didn't have Cochlear Implants?"

Keep in mind, the entire conversation I had with myself took place in about 10 seconds because I had to say something.  I had to answer him.  I had to dig a little deeper and see where this conversation was going.

I said back to him "Do you mean you wish you could just see what it is like to hear like me or do you wish you didn't have cochlear implants and could hear like me?"  He quickly responds "Oh, no, I just want to know what it is like to hear like you. I love my cochlear implants and am happy I have them.  I just wanted to know what it sounds like just like you said you wanted to know what it sounds like to hear with Cochlear Implants."  Whew...all that thinking I did was for nothing.  The 30 second panic attack was for nothing.  I shouldn't have been surprised or shocked.  I know Cormac loves his implants.  I know he would never change anything about himself because when it comes down to it his implants are part of him.  They are all he knows. He knows nothing different.  He can't remember life without them.  I clearly remember the first year of him not hearing and still can cry thinking he never heard me whispering in his ear.  He didn't hear my voice to comfort him in the dark.  It was not upsetting for Cormac.  He was a happy baby.  He is a happy kid.  He loves life and always has loved life.

Will I someday have a conversation with him and he will feel differently?  Perhaps.  I guess we will cross that bridge when we get to it.  For now we will continue to rock out in the car and listen to the music and not worry if it sounds different.  We enjoy it all the same.

#cormacrocks

Testing at NYU

Cormac went for his annual check up at NYU and went in the booth for testing.  I don't have the full reports yet but the audiologist reviewed them with me before we left.  Here is a little bit of a summary:

Cormac can hear speech at 5-10dcb across the board.  Yes, you read that correctly.  I cannot detect speech at 5-10dcb across the board.  Just utterly amazing!

They tested both ears one at a time and of course together.  I can't remember all the numbers off the top of my head but the most important one I do remember.  While bilateral with noise (they introduce noise) to make it more difficult he was able to repeat sentences totaling 140 words and he only missed one!  He responded to them all so quickly and was never even phased by what they were saying.  I am pretty sure he scored above 95% in all of the categories.  I will be waiting for the official report.  Needless to say, I could not be happier with his testing results.

His audiologist also did something she has never done before.  They tested his hearing without his implants.  Yep, headphones in his ears with tones.  The reasoning behind has to do with the improvements with preserving residual hearing after surgery.  She said they are testing all of their patients now.  We knew he would have no results because of the amount of hearing loss he had at birth. 

Cormac was surprised by the testing and a little confused because he knows he can't hear without his implants.  While the test was going on the audiologist kept increasing the volume.  At one point I could hear it even though it was on headphones.  Cormac raised his hand and said to the audiologist " I can't hear anything.  I can only feel the vibrations"  He said it felt strange and tickled his ears.

I consider him a great reporter and he was very cooperative during testing.  His results are nothing short of amazing to me.  When I think back to the beginning and learning about Cochlear Implants for the first time I never thought in a million years results like this were possible. I knew he would have access to sound.  I saw other children talking with their implants.   To sit in the booth with him and watch him whiz through testing with ease is just unbelievable.  Sure, he doesn't hear like you and I hear but looking at him it doesn't appear that way. 

On our way into NYC Cormac was playing with Google Translate on my phone.  He was using it to translate English to French.  He sat in the truck talking into the phone, listening to the response and repeating it for me to hear.  Granted lots of his statements were silly words and sentences but he was learning French.  When we got home he happily shared his new words with his brothers.  They can all say "Dad blew up the toilet"  and "My brothers exploded the bathroom" in French.  Hey, as long as they are learning another language....I will take it, right?

Cormac also decided he wants to start a blog.  He is naming it Hearing Power...My Life as a Bionic Boy.  He has just started it today so keep an eye out...

Here is a selfie he took in the Lincoln Tunnel

 

Here he is in the waiting room.  I remember him being so tiny in the chairs.  Now he is outgrowing them.

It's been quite a while since I updated. There are a few reasons. One my laptop has been on the demise and sometimes it's not worth turning it on. I have to get a new computer. Secondly, since school has ended we have been really enjoying our Summer.

We decided to not send Calleigh to her Summer program this Summer. I think we all needed a break. She has been enjoying her Summer like any other kid and she is thrilled.  She continues to get her private physical, occupational and speech therapy.

We had her testing done for her heart surgery. We haven't met with the surgeon yet to review her results so we still don't know which surgery she will need. There are two options. She can either have the surgery performed via a cath inserted through her groin.  They will use an umbrella like device that opens up and would cover the hole in her heart. This is the option we are hoping she can receive. If she isn't a candidate for the cath she will have to have open heart. And well, you can just imagine why we are hoping for option one.

The boys continue to grow up faster than I would like them to.  Three eight year old boys are tons of fun. To say they are enjoying their Summer is an understatement.  We have spent the Summer making memories I know will last a lifetime.  Movies on the beach, fireworks on the beach, great times with friends, riding bikes, surfing, swimming, playing and just being kids.

Cormac has mastered putting on his Neptunes alone which is a huge help. He can even change the batteries without my assistance.

I feel like this Summer is just a perfect time. No commitments in the mornings. No school pick up or drop off. Not a lot of strucure which really works for us right now.  Calleigh is so much calmer and happier. The stress of school makes the start of each day so upsetting.  I think she truly knows she isn't going and is a happy little girl. I am dreading the return to school for her.

Water and the beach seem to be her happy places so it really works out we live at the beach. Her swimming lessons are going well too. She loves the pool.

We are plugging away at the boys wish list for Summer. They had about 20 things they wanted to do. Hoping we can accomplish all of them before school starts.

Sometimes I wonder about writing the blog. Sometimes I wonder about Facebook. I out a lot out there.  This blog started to help others be aware of Cormac's hearing loss and journey to sound. I continued to write it because I became a mentor for Advanced Bionics and parents were referred to it. Lots of those same people are now friends on Facebook. I don't always know who is reading or if it helps anyone. I learned over the weekend from two different people how much they appreciated being able to share  our journey because it made their journey a little easier. I learned a sick young lady found so much joy is following my families crazy antics. Makes it all so worth while.

Hope e

All Good!

I am not sure why this has been on my mind lately but it has me wondering if perhaps I am the exception to the rule.  When I think about Cormac and Ciaran and their hearing loss I am 100% ok with it.  I honestly never have a day when I think any differently. I never wish Cormac wasn't deaf or Ciaran didn't have hearing aides.  It is who they are and I think it would change who they are if I removed their hearing loss.  Perhaps it has a lot to do with how fine they are with themselves.  They take pride in who they are as individuals.  They proudly rock neon earmolds or attach Mine Craft accessories to their devices.  Maybe it is because we have had nothing but positive experiences.  Maybe it's because I don't perceive them as any different than Colin. If  I was granted three wishes form a genie I can tell you I would not wish for Cormac to hear or Ciaran to not need hearing aides.

I sometimes think maybe I should want it to be different. Does it make me seem less caring than others?  Do people think I might love them less because I would not change anything? Would a better parent want to take this away from their child? If you know me you know I love my kids to death.  I have fought for them since the beginning.  I love them no matter what.  I would NEVER want their lives to be harder than anyone else.  I would NEVER want hem to be unhappy.  I would never  want to see them struggle.  I want their lives to be filled with only love and happiness.  I think as their Mom I am doing my best to give them all the love and happiness they deserve. 

What I see every day are happy, healthy, well adjusted kids.  I see just turned eight year olds.  I see no limits to their futures.  I listen to my deaf son sing all day long.  I listen to the boys talk and talk and talk ALL DAY LONG!!  Sometimes I think I think the talk too much :)  I watch then run into school because they love it.  I watch them on the playground or baseball field or soccer field or at gymnastics and not once does it cross my mind that it should be any different.

I do still find myself in  awe of them.  I think about how I would have felt as a child and be "different".  I don't think I was as confident as Ciaran and Cormac.  I love that just this morning Cormac said to me "Mom, last night at baseball Joe told me I was very cool".  I said "why did he say that?"  Cormac says because he said to me I know you wear those to help you hear but how do they stick to your head?"  When Cormac told him and showed him the magnets the boy said it's totally cool you can do that"

I still get overwhelmed with emotions once in a while.  I am sort of used to the whole "triplet thing" by now but certain times just get me.  At their communion when I looked up at the altar and THREE of those adorable kids singing were mine, well, it brought tears to my eyes.  It is a reminder when I see Cormac SINGING the loudest how different things could have been if we had not decided to implant him.  My main goal when he was diagnosed as deaf was to have him to be able to go to school with his brothers.  I never wanted him to be singled out and feel like he wasn't one of the group.  Moments like that literally take my breath away and I wonder if I just appreciate it a tiny bit more because I know what it took to get him up there singing his heart out.  He makes it look so easy but looks can be deceiving.  He worked his little butt of for years and continues to do so.  It is part of him and I would never want to change a single thing about him :)

Different Learners Day

Cormac and I were asked to participate in Different Learner's Day at a school in Little Silver, NJ.  We participated last year and Cormac was so excited to be asked to return.  The school does an amazing job for this special day. The point of the day is to let kids know everyone learns differently and while you may learn differently everyone is the same.

There was a hearing room, a vision room, a physical disabilities room, etc.  We were obviously in the hearing room.  An audiologist, Lori, ran the room and did a spectacular job.  She talked to the kids and taught them about hearing loss.  The kids broke up into groups and went to different stations.  They had a sign language station, an unfair hearing test station and our cochlear implant station.  Cormac was the only child who participated in any of the classrooms.

Cormac prepared on his own and made a binder about himself.  I was so proud of him.  What I loved most was the last page.  He said "even though I may hear differently I am just like all the other kids"  Isn't that what we want all our kids to know?  He said at one point "My friends at school don't care I have implants.  They just treat me like everyone else.  But if I don't hear something they help me too"


Here are pictures from his binder. Sorry about the first two facing the wrong way.

In total he spoke to about 80 third graders.  They came in small groups so it wasn't all at once.  He was never once afraid to talk or shy.  He was proud of himself.  He was proud to share his experiences. He was thrilled to answer questions.  He was comfortable in front of the kids just being him.  He was funny and loved showing the kids he can stick metal objects to his head.  He loved showing them he can read lips.

Here he is with my earring stuck to his head.

Here is a group of the kids.

I had two favorite moments of the day.  The first was when the boy in the video says "He talks better than most of my friends".  Some of the kids were really surprised he could talk.  Lots of them asked their questions to me instead until they realized he just answered them anyway.

The second favorite moment came via a sweet little girl named Sophia.  After Cormac did his presentation we asked if their were any questions.  To which she replied "I don't have a question about his hearing but how did you get to be so adorable.?"  Cormac turned every shade of red under the sun.  She was so adorable.  As she was leaving the class.  She stuck her head back in the doorway and said "Cormac, I just can't stand you cuteness!"

 We managed to get a picture with her.

And this was his reaction when she called back to him in the room.  He was being shy.

I don't think I stopped smiling the entire day.  I had flash backs to sitting in a rocking chair and crying when I was told Cormac was deaf.  I rocked him and thought so many things.  Would he be able to go to school with his brothers?  Would he speak?  Would he every hear me say I loved him?  Would he ever tell me he loved me?  So many thoughts ran through my head that day and in the many days to come.  If someone told me that day I would someday watch my deaf son speak and talk about himself with such ease and confidence I probably wouldn't have believed them.

My heart was filled with love for him and for all the people who helped us reach this point.  It takes a village for sure.  I did shed a tear when he said his brothers helped him learn to speak.  He credits them with getting him talking.

He already asked if he can return next year :)


Here are some videos of him speaking to the kids.

Cochlear Implant Awareness DaY

Today is Cochlear Implant awareness day.  I am thrilled a day s set aside to recognize this medical miracle.  On a daily basis in a normal day in our lives we have reached the point where it is just "normal".  Cormac is just a typical almost 8 year old.  While it seems just like any other part of our day not one single day goes by that I am not aware of many things.



I am aware Cormac can hear.  Yep, he hears.  My deaf kid hears.

I am aware he is and has been for years above age level in school.

I am aware he was fully reading by the age of four.

I am aware his cochlear implants have made it possible for everyone in our family or everyone we know to communicate with him without my assistance.

I am aware he loves music.

I am aware he loves to talk and tell stories.

I am aware he no longer is a spectator in his own life with his brothers and he is part of the team.

I am aware he loves to goes to school every day and thrives!

I am aware of how hard he has worked to get to where he is today.

I am aware he makes it look easy when I know he has to work harder than other kids to appear the "typical" kid.

I am aware he loves his cochlear implants.

I am aware he knows he is deaf but it does not define him.

I am aware making the decision to have him implanted was the single best decision I have ever made in my life.

I am aware anything is possible for him and he has NO LIMITS.

I am aware of how amazing Ciaran and Colin have been in the entire process.  They are his best supporters and biggest helpers.

I am aware Cormac is surrounded by children all day who love him.  His classmates are just amazing and he is blessed to have them.

But what I am mostly aware of is even though we are over six years in Cormac's journey not a single day goes by when I am not stopped in my tracks by something just amazing.  He says something or does something and marvel at it.  I am aware the miracle of cochlear implants never, ever gets old!