just had to post

I'm in the middle of writing a long overdue (as usual) update on Aiden, but just had to come share a special moment shared by him and me this morning.

Early this morning, as everyone else slept, Aiden and I sat on the couch snuggling, me trying to search for Christmas ideas on the internet, him trying to get me to play Candy Crush on facebook. I don't even know what started the conversation, but we started talking about being deaf, hearing aids, and cochlear implants. He understands he's deaf, he knows that not everyone needs CIs to hear, and honestly, he never says much about it. He loves his technology and at times, even prefers to be without.

So as we talked, we watched videos. Videos on his hearing journey - from the time he had hearing aids (he thought it was hilarious that he was in the audiology booth as a baby!) to his activations, to his one year hearing video. It was after watching this one year hearing video that he snuggled up closer and said,

"I want to make a video. I'll say how I hear with cochlear implants and why I love them. and about (being) deaf."

{TEARS}.

This March will be his FIVE year hearing birthday.

Celebration indeed.

and what a perfect project to work on together.

In the meantime, a little flashback to his first year hearing video - From Silence to Sound.

another great video

Excellent video recap of 10 year old girl's story of having her CI activated. I LOVE these stories for many reasons, but it's always so touching to hear what it's like from someone older since Aiden could not tell us what the whole experience was like going from silence to sound.

http://www.wfaa.com/news/Girls-video-diary-chronicles-her-struggle-to-hear-153311365.html

She heard herself breathing for the first time ... something that seems so simple ...

I challenge you to stop today. Stop and listen. Take in all the sounds around you that so many never get to hear. What are some of your favorite sounds?

faith

I am honored that others shared my last post on their blogs and FB pages. I am proud to be a part of such a wonderful community and I can't say enough about all the friends I've found through Aiden's journey. To have the support of people who just "get it", is indescribable. One of the first things I suggest to parents who are new to this journey, is to reach out, because it is the love and support from this community that can mean the difference of going insane to finding peace inside.

So yes, we worry. and yes, we freak-a-zoid out at times. it's a part of parenthood no matter what the situation, and sometimes it's just needed in order to move forward.

one of my inspirations, Jodi, whose son is quite a bit further in his hearing journey than Aiden, said it best on my FB page:

"you can worry about your future ... because your present is ok

... and that is a good place to be."

(LOVE this)

and in this post:

...Keep moving forward, because it is those lessons learned in the present,

the time and attention that you dedicate to loving your family and

worrying

that will prepare your child to confront all of those infamous worries that torment those free moments that actually give you time to think.

Keep the faith.

amen to that.

but know,

so much more than worry, we have HOPE, and we have FAITH. We are INSPIRED by those who have walked before us, ENCOURAGED by those who walk hand in hand with us, and only hope to provide GUIDANCE and a bit of PEACE to those who walk after us.

and with that said, please take the time to read THIS POST from another one of my inspirations, Rachel, who helps ease my worries about Aiden's future through her story and all her adventures. Make sure you watch the video by clicking on the picture at the top.

chills. tears. smiles.

"Faith is taking the first step even when you don't see the whole staircase."

Martin Luther King Jr.

just saying ...

... most of the time it's fine. In fact, more than most of the time you

don't think twice about it. second nature like.

Get up in the morning, put on his cochlear implants,

just as you put on his clothes.

Talk to him, listen to him,

COMMUNICATE THROUGH SPOKEN LANGUAGE.

Therapy at the kitchen table becomes an everyday thing.

You call your husband excited about the discovery of a new word or sound,

and you cherish the moment together.

CIs are now a part of everyday life; a new normal.

as time goes on, you get past all "the looks and stares".

you THANK GOD ev-er-y.day for the miracle of CIs and

all the differences they've made in your child's life and

all the opportunities they've brought (and will continue to bring);

you THANK GOD ev-er-y.day for the fact that he can HEAR

and that when you talk to him, he comprehends,

even if he doesn't LISTEN to a word you're saying,

you know he HEARS you.

and when you confirm your initial thoughts, (and the equipment is just fine),

you chuckle, because he's no different than your two hearing kids,

in the fact that he TOTALLY has learned listening is a choice.

and you know it's the actual hearing part where the miracle began.

and mostly, there's this constant giddiness because of it all.

BUT, there are still THOSE moments,

MOMENTS, that may last a minute, sometimes an hour,

sometimes more than a few hours,

sometimes a whole freakin' day ...

WHERE IT ALL SUCKS.

Where all you can do is WONDER and WORRY,

about what's to come.

He's only THREE

hearing, two years.

You've come such a long way, yet have such a long way to go.

and of course you worry. Not all the time. Not a lot of the time,

but there are some times, you worry much more than others.

and sometimes that worry is hard to shoo away.

and even as you hear him talk to his siblings, or know he responds

as you call his name from upstairs and he's downstairs,

down the hall in the back room with the tv on,

there are still moments of worry ...

...what's to come when he's 6 and is not in an oral deaf program

with kids who are "like him", because you've worked so hard for him

to be a part of a mainstream classroom and

even harder that he NOT be defined by his hearing loss,

YET, all the six year olds see him as different.

Not only because of the equipment on his head, but

because it's much harder for him to listen and take it all in.

and you just pray and pray the teacher

teaches the class about UNIQUENESS.

not just his first year teacher in mainstream school,

but every teacher and every year thereafter.

...what's to come when he's 8 and he really starts to see himself as different,

and tells you he hates being deaf or asks why he has to be deaf,

when no one else in his family is;

or is scared to speak his voice to tell someone, "I didn't hear you," or

"Can you please repeat what you said?" because he doesn't want to stand out,

in fear of drawing more attention to himself when

honestly it wasn't his choice of not wanting to listen,

but the mere fact that he just didn't hear.

...what's to come when he's 10, and there are sleepovers.

and yes, he's been accepted, because you do everything.in.your.power

to make him a part of the community and to be included,

you advocate, you teach, you empower.

BUT, he's still DEAF and at the sleepover, he's not sure if he should

take off his CIs so not to miss out on the craziness that may go on after he

falls asleep and can't hear a thing.

...what's to come when he's a young teenager and all the kids are

going through puberty. the time when it's a known fact

that kids tease other kids,

and making fun of someone's differences is one way

of ignoring/getting past their own insecurities,

no matter how wrong it is.

you pray he has a good sense of humor, some good come backs,

and that it's not him who is the insecure one.

...what's to come when he's in his late teens and heading off to college,

to a WHOLE NEW community new to his world.

Having to take classes in HUGE auditoriums,

with 100's of classmates, and be able to understand

and keep up with everything the professor is saying.

because honestly, does the professor really care if he's getting it or not?

OR when he's in his college dorms and everyone is running out

because the fire alarm is going off and he's fast asleep, without his CIs on.

will someone stop to take the time to wake him?

You continuously teach him to be his own biggest advocate,

but even in doing so, you constantly pray and hope you are also teaching him

to always be proud of who he is and to use his voice.

as it is his voice that you've worked so hard at achieving.

it is his voice that you are thankful for everyday,

right along with every.single.ounce of hard work teaching him

to not just "hear", but to LISTEN.

just saying.

it's not easy.

I'm his mom. and no matter what,

I will always worry about the "small things",

that truly,

aren't.that.small.

He's Going to School

I was beside myself with excitement yesterday as I opened up the mailbox and saw Aiden's class placement at THE RIVER SCHOOL! It feels like I just had my little monkey and now he's starting a two-day-a-week toddler program at one of the best language enriched schools around!?!? I'm truly in awe.

To make it even better, when I looked at Aiden's class list, I saw he's in class with Ben!!!! Ben's mom and I have never "officially" met, but we stay in touch through emails, discussing our boys successes and supporting each other each step of the way. We have followed each others journeys from the beginning. Ben was our hero as he was Dr. Niparko's first simultaneous bilateral cochlear implant kiddo, which helped us with our wish to do the same (Aiden was his third). When I first "met" Ben's mom over a year ago, I had no clue I'd be living so close, and better yet, that Ben and Aiden would be attending such an incredible school ... together ... in the same class! We can't wait to meet them!

The River School was founded in 1999 by a mother who wanted her deaf son to be part of a developmentally appropriate program with hearing peers. Approximately 15% of the students are deaf or hard of hearing while the remainder of the students are hearing. So Aiden will be in a classroom with hearing peers a.k.a. STRONG LANGUAGE MODELS! He will go to school two mornings a week in a theme-based environment where the children develop skills in play, socialization, and communication. This is such a fantastic opportunity to build a solid foundation for Aiden's learning to hear and speak. To top it all off, The Listening Center at Johns Hopkins has a unique relationship with the school and Aiden's surgeon sits on the school's Board of Directors! Still total awe.

There is one educator per classroom AND one speech language pathologist who works one on one with the deaf/hoh kids in the class! Aiden's class only has 8 kids, and I believe him and Ben are the only deaf kids in the class. So this is four straight hours in an oral language environment with pretty much their own private speech language therapist! On top of all this, the school also has an onsite Occupational Therapist (who could possibly help with the fact he is STILL NOT WALKING), and a full time audiologist who will work with our audiologist at Hopkins should any issues arise. The audi will have access to all of Aiden's maps (CI programs), supplies, a soundbooth, etc. so troubleshooting/mappings can happen right at the school! Aiden will also receive one additional hour of private therapy once a week after school. Pure Heaven.

I first heard of this amazing school as I followed Christian's hearing journey. At the time, we were still in Texas with no plans to even move to Maryland. Before we knew it, Aiden's daddy got a different job which relocated us to Maryland. We couldn't believe that Aiden was going to be implanted at Johns Hopkins, by Dr. Niparko, whom we wanted to do Aiden's surgery from the get go. Our thoughts when we first found JH and Dr. Niparko were, "Oh wouldn't it be nice." Well it happened. Then shortly into our journey I read about The River School from Christian's mommy, shared it with my husband, and again we imagined the possibilities, "Oh wouldn't it be nice." Well it happened again. Truly Blessed.

When we first moved up here I started attending the parent-infant class at the school and was taken aback by their whole approach in teaching deaf/hoh kids - the atmosphere throughout was thick with language development. I wanted more. The drive isn't easy (45 to 90 minutes depending on traffic). The tuition IS NOT in any way cheap (WOW!). With me not working we figured it just wasn't possible and decided to avoid any disappointments. Well, as time went on, I could not not try. I couldn't live with the "what if's" so I pushed forward. Sure enough, even though we were late to apply, they entertained the idea of Aiden attending, we went for a tour, they did a play "interview" with Aiden, and within a couple weeks we found out Aiden was accepted and that we received some financial aid!! So with the aid, some MAJOR sacrifices, and Aiden's daddy's recent promotion, we decided we had to make this SIMPLY AMAZING opportunity work for our son. Since we were late to the game though, I didn't want to jinx anything until his actual placement was in my hands. It's here. Can you tell I'm excited?

I am a very nervous momma leaving my little man, as he will turn 18 months just days after he starts school. Plus, he's not used to being away from mom; he freaks if I leave him for 5 minutes with a neighbor. Oh ya, did I mention he's STILL NOT WALKING! In the same sense, he loves being around other kids and is such a social butterfly. He's going to do great. He's going to be okay. (repeat to self 1000 times a day!)

We will continue our weekly Auditory Verbal Therapy (AVT) as we have really made some good strides this past few weeks. I am cutting back to every other week with his TOD (Teacher of the Deaf) and PT. So every other week, he will be getting four days straight of some sort of therapy. Ya, I think we'll take Friday off and make them Friday Fun Days!

Words can't describe my excitement. We have been so blessed throughout Aiden's journey! We are so thankful for all the wonderful opportunities that have been presented to us, and now this. The Lord works in mysterious ways and although we were never too excited to move to this area, He brought us here for many, many wonderful reasons. We truly are blessed ... and VERY thankful.

Now if I could just get the boy to walk before school starts!

Siblings of Deaf/HOH Children

We are always very open with our two older hearing children in discussing their little bro's deaf world; always sitting down with them to discuss what it means to be deaf, how they can help Aiden, and how they are feeling.

I'll never forget the day we told them about Aiden being deaf. We ordered pizza. After dinner, we asked them if they knew what it meant to be deaf. Ryan, at age 11, knew it meant you couldn't hear, but didn't realize how hard it was to learn to speak as well. Kailyn, at age 7, had no clue. So we explained it, as simple as we could.

And the conversations, at different times, went on into teaching them how a deaf child can learn to hear and speak, cochlear implants, hearing aids, therapy, etc. We have always been very open with our kids about their brother. In fact, as soon as we started therapy, we got them involved, we wanted them to feel a part of it all, as if they were helping him just as much as we were. Yet, at the same time, we did not want to overwhelm them with Aiden, Aiden, Aiden.

I noticed, when Aiden was about 3 months old, that I was working with him and not spending as much time with my other two. I noticed, I was CONSTANTLY researching and reading everything I could about being deaf. I had to know it all NOW. I had to take a step back though and remember, my two older "hearing" kids needed me too. This was just as new to them as it was to me. We were all living in a new kinda world.

Soon after this defining moment, Ryan asked us some questions about Aiden.

"How much will Aiden's hearing aids cost?"
"How much are ALL OF THESE APPOINTMENTS Aiden has to go to?"
"How much are Aiden's CIs going to cost?"

All of these questions about money, and when he asked, he acted like it was a "no big deal, just a little curious" type of thing. But, I'm his mom. I knew better.

ONE, I did not want my oldest son to have any remorse towards his younger brother; and TWO, I learned when my dad was dying, that preteens often worry whether or not they are going to be taken care; especially when there is a big change in their life. Which, this was. To us all. We constantly reassure both of our kids that they will be taken care of, that we will never let anything happen to them, that we will do everything in our power to make sure they will be okay!

Then there's Kailyn. She's recently turned 8 and is just in love with her brother. What I found with her is to get her involved as much as possible! During the summer I brought her to therapy with me (I'd try to get Ryan to go, to no avail, but did not want to "make" him). Kailyn loves learning how to work with Aiden - it makes her feel important - and she does a wonderful job with him!

At one point, Mike was doing a (non-learning to listen) airplane sound, and Kailyn stopped and scolded him, "Dad, that is not the sound for the airplane! The airplane sound is ahhhhhh, ahhhhh."

SIBLING INVOLVEMENT ....
IT MAKES SUCH A DIFFERENCE!

Jodi, an absolutely amazing mom, is helping Hands & Voices complete a study on siblings of deaf/hoh kids. I asked Ryan & Kailyn these questions she's asking of you, and here are their responses:

Question 1 - What do you tell your friends about Aiden's deafness?
Ryan - "I don't. I don't think it's a big deal to announce it because it's just who he is."
Kailyn - "This is my baby brother, his name is Aiden and he has "earing" aids so he can hear. He keeps getting new ear molds and he has two hats so he can't grab his "earing" aids out."

Question 2 - What's the weirdest question you've ever been asked about Aiden being deaf?
Ryan - "My friends will ask if he's deaf, I tell them yep and that he's getting cochlear implants, which will help him hear, and they don't really say anything else."
Kailyn - "Friends ask me if he can hear with those things in his ears."

Question 3 - If you could change one think about your brother, or his deafness, what would it be?
Ryan - "His chubbiness." (I told him babies are supposed to be chubby) "Not like that fat little man." (I asked him if he'd change him being deaf) - "Yeah, I guess. I wish he could hear, but I know he will with cochlear implants. It doesn't bother me he's deaf."
Kailyn - "I like him the way he is, but not getting "earing" aids. They bug me with all that noise and I just don't want him to have them anymore. I wish he could hear without his "earing" aids."

I also asked them if there is anything about his deafness that bothers them:
Ryan - "It's just an inconvenience" (I got a little worried at this point and asked why) "because it's harder to mess with him and tell him I love him." (not so worried anymore) ; )
Kailyn was done at this point ...


If you'd like to help Jodi out with this survey, visit her here to learn details, or respond to these question in my comments, and I'll get them to her. Again, balance between hearing siblings and a deaf/hoh sibling is SO IMPORTANT!


Oh, and the last thing I wanted to mention was the recent seminar we went to. A local parent support group, along with the Dallas Callier Center, supported a seminar for hearing kids and their deaf/hoh siblings. Our kids got to meet other kids who had cochlear implants, simulate deafness, simulate different tests their deaf/hoh sibling experience, and most importantly, realize their deaf/hoh brother/sister was going to do GREAT!!

A 6 year old girl who had bilateral CI's came up to my husband (as he was holding Aiden) and asked him if Aiden was deaf. Mike said yes, and the little girl asked, "Well, where are his ears then?" which Mike explained since Aiden was sleeping, he didn't have them on. She proceeded to talk to him and we were both AMAZED! My kids were AMAZED! This was all of our first day, of many yet to come, around many kids with CI's, and their siblings. I'm still taken aback!

My kids ABSOLUTELY LOVED this experience! If you have any questions about this simulation, let me know!

What Makes Us Weaker ...

actually makes us stronger. Everything really needs to be day by day and step by step. I sit here tonight thinking about all of the change that has happened in my life in the past year ... and how this has been such an influence on me being a mother to a deaf baby.

My dad, at age of 55, passed away this past January of dementia. Doesn't make sense at such a young age does it?!? Tell me about it. He was the father who called if he saw a storm coming towards the city I lived in, to make sure I made it safely to whatever destination I was flying to, to tell me he loved me everytime I walked out the door ... even if it was just to run up to Walmart!

I took care of my dad for two years with this disease. I watched him deteriorate. I watched him become a person I didn't know. I watched him go from a strong, outgoing, fun loving person to a paranoid, weak, not to sure of who he was OR who I was. I watched my dad die. It was the hardest thing I've ever had to deal with, or so I thought at the time.

Three months later, Aiden was born and failed his newborn hearing screenings. This was just as devastating to me. How could this happen? After all I had just been through, after all I had just done for my father, how could God let my baby be deaf??? And I questioned and I questioned and I questioned. I didn't understand it. I felt like I had been through enough. I felt lost. I knew I helped my father as much as I could, but at the time, I had NO CLUE how to help my precious baby boy!

Now I understand. I needed Aiden as much as he needed me. I was taught such a powerful lesson with dealing with my father's death, that I needed to empower that lesson in raising Aiden. That lesson being - life is too short to live in fear, life is too short to not do something to make a difference, life is too short to stand down and not speak up for what you believe in. I learned to voice what I felt to protect my father and now Aiden, I learned to stick up for what I believe in, I learned to truly follow my heart and know IT will lead the way.

It's still very scary though. How will his peers treat him, how will he adapt to hearing, how will I be strong for him on the days he is so sad and I just want to take all his pain away. And there are so many choices to make for him, as his parent ... bilateral implants, simultaneous implants, communication approaches, do we teach him sign, making sure he gets the right therapy(ies). Such different choices than I had to make before, but just as difficult. These are times I would call my dad just to "talk through" my choices, and he would offer (give) his opinion (very strongly) and I would listen. And then he'd call back with another thought, and then another, and another (I love you dad). My dad always wanted to make sure I was okay ... and that his grand babies were okay. His grandkids were his life. By now, my dad would have every DVD on sign language, have signed up for courses, looked at anything to buy off of TV or in ads on hearing loss, anything to do with hearing loss or deafness, he'd have and be ready. When it came to his family, especially his grandkids, no one could stop him, they were his life.

I still wonder everyday if I made the right decisions for my dad and if I make the right decisions for Aiden. But I have to believe in what I've done and what I do. I miss my dad terribly ... I get teary eyed thinking about him many times throughout everyday. Yet I feel a tremendous peace about me that God has given me this special child for a reason. I'm not sure exactly what that reason is yet, but I know I have learned so much more from Aiden and that I will do everything in my power to help him be the person he is meant to be plus some!

Defining Moments

Soon after starting this journey, a couple moms emailed me advice and told me, "Don't let this define your son and don't let this define who you are either", and I agreed. No way was this going to define Aiden and the person he is .... no way will I let it define who I am. But it was ... and these are the two things that made me realize it.

Trip to the American Girl Store
Kailyn isn't a big doll fan ... she's more of a stuffed animal, barbie fan, but she has been wanting an American Girl doll for awhile now (heck, I wanted one for her - I loved dolls as a kid). So I planned a trip with a friend and her daughter to spend the afternoon at the American Girl Store. For those of you who haven't been, it's a girl's paradise - just imagine, two whole stories of nothing but dolls and all their cool accessories - they even have a hair salon for the dolls and a restaurant to have lunch with them! I don't know who was more excited, Kailyn or me! After shopping around, we, I mean she : ), picked out Kit, from the new movie Kit Kittredge, An American Girl. She picked her because it really is like her twin!

Anyway, the reason I bring this up is because it was this day, after having so much fun with Kailyn (and Aiden in tow), that I came home and realized that I have been doing nothing but reading and research (what I call my new R&R) on deafness. Yes, there is SO much to read and learn and know, and DO, but I realized I needed to take a step back. I realized I was letting Aiden's deafness define ME, everything I did had to do with his deafness, I thought about it 24/7! It felt great to just let it go that day ... to not think about it ... to have my mind back and have fun with my kids. Now if I can just get that big boy of mine to spend some time with his mom ... guess I need to start playing some Guitar Hero! ; )

Aiden's in his own crib!
Yep ... at night too! First it was just for naps, but he has spent the last two nights there! No worries about hearing him! We wouldn't even need the monitor - he defninitely lets us know when he's hungry!

Moving Aiden up to his own room has really had an effect on me, in a happy feeling kind of way, like I have a whole new appreciation for my little darling, and myself. I really don't know how to explain it, but I realized I don't need to be so "protective" of him. I don't know if it's because he's my third (after 7 years of having a baby) or because he is deaf. He's no different than my other kids as a baby, besides the fact that he can't hear and I put hearing aids on him when he wakes up. My other two kids were in their cribs before they were even two months - Kailyn probably 2 weeks! Since he's been up there, something has clicked, in my nonstop mind, that made me realize everytime I looked at Aiden I thought about his deafness. I constantly thought about what had to be done to help him hear or what else I needed to research, or what I should be doing with him. Was it story time ... was it time to sing ... time to sit and make our animal sounds ... time for vocal play. I was letting his deafness define him. I remember saying in a previous post "he's more than his ears", and now I had to remind myself of that.

For the past few days I've just let it all go. I had to. What I discovered though is that I don't need to CONSTANTLY think about what else I can do to help Aiden, because by just being his mom, I am helping him. I've discovered that I'm making these animal sounds, doing vocal play, and talking to him all the time anyway, just like I did with my other kids ... and without the stress of constantly thinking "I HAVE TO do this or that". I already am doing it! He's getting the therapy needed by me just being mom - not a mom to a deaf baby - but a mom to Aiden, the same mom I was to Ryan & Kailyn. He is more than just his ears ... he's my precious little binky boy!

I feel sorta free again. Yes, I will continue with my R&R (reading and research) and of course I will continue with daily AV therapy with Aiden, but what I feel good about is that I have "fired" that "little nag" in my head constantly yelling at me "you have to do this ... or you gotta do that" because by just being mom, it will get done, and Aiden will be okay.

Now, I'm off to rediscover the true R&R ... rest & relaxation!

PS - For those of you who know me, know I may be a little O.C. (blows the whole theory above right out of the water huh?) But, I have been thinking of what I haven't really shared, and in future posts I'll explain more about the communication route we've chosen for Aiden (AVT - Auditory-Verbal Therapy), what I learned in therapy the past couple of weeks and what they believe Aiden can hear, things we're doing at home to help Aiden, and what cochlear implants are and how they work. There's so much I've learned that I want to share, plus it helps me better understand it all too ... okay, back to the real R&R ... I hear the pool calling our name!

Out in Public with the Hearing Aids

We took our first trip out in public since Aiden got his hearing aids. It was for Kailyn's field day at school, she's in the first grade. I thought what a great place for him to get some kind of stimulation with all of the kid's voices and laughter! It was a lot of fun and Kailyn had a blast! For those of you who don't know Kailyn, she has a very strong personality who has no problem saying what she needs to, doesn't have a shy bone in her body, and is a little comedian! When the GIRLS beat the BOYS at tug-of-war, Kailyn yelled out "oh yeah, oh yeah, girl's rule, girl's rule, boy's stink!" as she danced around shaking her butt! We need to work on the being a good "winner" part still!

Kailyn is so proud of her brother so everyone in her class knows Aiden. A lot of the kids would come over to check him out and as 7 year olds, ask "what's that thing in his ear?" to which I replied "When he was born his ears didn't work and he can't hear, so these help fix that and help him hear, they're called hearing aids." Then there were all kinds of responses, "hmmm", "they're cute", "cool", and my favorite, "so they're kinda like band aids?" How cute are kids! One kid looked right at me and said "Someone told me he was deaf" and I just truthfully responded, "Yes he is, but one day soon, he will hear!"

After Kailyn's field day was over, I headed to my fourth grade class to join them for their field day (I teach at this same school, but am still on maternity leave). I've brought Aiden up a couple times to my class, but not since he's had his hearing aids. As my fourth graders surrounded me and admired Aiden, a few of them asked about the "things" on his ears and again I told them about his hearing. As I think about it now, I should've used this as a teachable moment on uniqueness. That was one of my biggest lessons all year long, how we are all unique and special in our own way. Oh well. They were too hyped up for field day, and really had the same reactions as the first graders ... "oh, ok, cool". Kids amaze me!

Now, to the other spectrum, parents. Most of my student's parents are aware of Aiden's hearing loss and have been very supportive and were excited to see him in his hearing aids. A lot of the parents throughout the school I don't know, but they know me from working at the school. They'd rush up with a big smile to see Aiden and I'd sorta see their smile disappear with a quiet "congrats ... cute ... how is he? is everything ok?" and they'd walk away ... no more conversation, nothing. I was okay with this ... it's not like we all know each other, BUT, I did think, we could still talk, we don't HAVE to talk about what you see, he is more than his ears.

What I've always known and have experienced myself, is that disabilities scare people, adults I believe, more than children. Kids are amazing, they look past the disability, I've seen this in my classrooms. What I learned yesterday is that I am not scared anymore. I was so proud to walk around with my son and was ready for anyone to ask about his ears. I am proud of who he is and will not hide behind his deafness, because it's his deafness that will enable me to be more than I ever was before!

Our Journey Begins

I started creating this blog after learning so much from reading blogs from other families with a hearing impaired child. I have learned so much from people I don't even know, yet feel so close to them all! I've never done this before, but I believe it will be good in my healing, good to keep family and friends updated on our son's journey, but more than anything, I hope this helps ease another family's worries who may go through the same thing we are. Now, Aiden's journey to hearing begins.

March 17th, 2008 - Aiden's Birthday! -I was induced at 9:30 a.m. and Aiden was born before lunch! The labor and delivery went great! We couldn't believe it when they told us our baby was 8 lbs, 20 in.! He had an Apgar score of 9 out of 10! We had a perfect little baby boy and he was absolutely beautiful!!

That day in the nursery, they came in and did a hearing test - I didn't even know this was required in Texas for newborns! As they performed the test, I saw looks of concern on their faces, "It's probably just fluid, we'll come back and retest tomorrow." Which they did ... same results, same answer, "Go home and enjoy your baby, give it a couple weeks for the fluid to clear up, then come back and retest." So we did just that - we took our newest bundle home and just enjoyed him. We worried a bit, talked about it here and there, but just knew when we brought him back, everything would be okay. How could it not?! We don't have any hearing loss in our family ... Ryan & Kailyn hear just fine (when they want to anyway!) But when we brought him back for the third test, he failed again. This time I cried and worry set in. They set us up an appt. with an audiologist and said "they'll do a better test, it may be just fluid!" Of course it was just fluid! This was the only option as far as I was concerned!

April 15th - First Audiology Appt. - I was wrong ... there was another option God had for Aiden, and that was deafness. On this day, my precious little boy was diagnosed with permanent profound hearing loss in both ears (meaning, if he was next to a plane on the runway getting ready to take off, he couldn't hear it). That day in the audiologist's office is still a blur and I get tears in my eyes just thinking about it. I had a good pregancy, a good delivery, everything was so right and all I could think of was "what did I do wrong?!" All I could think was they weren't right - how could they tell he was permanently deaf in both ears with just that one little test?!? They didn't even look IN his ears! Everytime I held my baby thereafter, I felt as though my perfect world with him was shattered.

I didn't tell many people at first, saying it made it real. One of the first people I did tell though was my dear friend Jenny (who is also the speech therapist where I work) . She set me up with a world of resources. She called everyday to share something new. She let me know, EVERYDAY, that everything was going to be okay. So I took this time to research and learn as much as I could. I emailed our audiologist and asked a lot of questions (who emailed back answers I DIDN'T want to hear!) The first week was a very hard one! I cried a lot ... everytime I held Aiden I felt a loss for him. I finally reached out to a lot of friends and family for prayers, love, and support and it was the best thing I could have done! They sent encouraging words, gave huge hugs, sent names & numbers of people who have been through similar situations. It was then that I started feeling more at peace and started having more good days then bad and coming to the realization that even with Aiden's hearing loss, everything is going to be just fine. (and still 4 weeks later Jenny is still finding me great resources, even if it is the lady working behind the Target register wearing an implant! : )What an advocate she is for Aiden! She is amazing!)

May 7th - ENT Appt./May 8th - 2nd Audiology Appt. - Here is part of an email I sent to friends/family that gives a good overview of these two appts. Oh what I've learned in the last few weeks! I feel like I could teach a class!!!

We had our appointment with the ENT on Wed. and then a follow-up with the audiologist yesterday. We really like Dr. Bauer, he was compassionate, yet straight forward and great at explaining all this as well as listening/answering questions. He did tell us that the ABR tests (the one that showed Aiden's hearing loss) are very accurate, and confirmed that Aiden is deaf in both ears. He also explained that Aiden's type of hearing loss (bilateral sensorineural profound hearing loss), is the type we want to him to have, if he is to have it. They believe that Aiden's loss has to do with the cochlear hairs being deformed (which transmit sound to the auditory nerve which then transmits sound on to the brain). They can fix this with a cochlear implant which takes the place of these "hairs". We won't know 100% if he is a candidate though until his MRI, which Dr. Bauer will do at six months (because of sedation). The MRI will show how his cochlea is formed as well as show if Aiden has the auditory nerve in both ears. If the auditory nerve is missing, he will not be a candidate for implants and will not hear (they say this is rare).

We confirmed his hearing loss yesterday with another ABR test and an OAE test (which showed again, that the loss is coming from the cochlea and makes him a good candidate for implants). They also fit Aiden for hearing aids, which will help his auditory nerve get used to sound vibrations (like working a muscle) as well as get him used to wearing something on his ears. They also set up a speech therapy referral, which we will start in the next couple of weeks. So all in all, since Aiden does have permanent hearing loss, these were positive results. If he is a candidate, Dr. Bauer will implant our baby's first cochlear implant around 12 months and he will start hearing soon after!

Ultimately we wanted to hear that Aiden's loss was due to fluid and they could fix it. We didn't hear that, and somehow knew we were not going to. We have been coming to terms with it all and know we are so lucky to have this precious little guy in our life - he is an amazing child!! How lucky are we - God gave him to US!

Please continue to pray for Aiden and that he is a candidate for implants and that we find the wisdom to make the best decisions for our baby and are his best teachers! I know Aiden will ultimately teach me so much more than I will ever teach him! I have so much faith and hope and just know everything is going to work out for our newest miracle!

So here we go ... opening a new chapter in our life, not only with the arrival of Aiden, but the arrival of an unknown. I know in my heart that everything will be okay, no matter what. God has given us a beautiful little boy who will be amazing and who will not be held back - as far as we're concerned, his world is wide open and he will achieve all that he wants without limitations! I will stop at nothing to always do what is best for him, just as I do for Ryan and Kailyn! Step by step, day by day, life is a journey, and this is Aiden's.

(Here is my bundle screaming loud enough to wake the dead (he doesn't like his hat!) and peacefully sleeping, which he doesn't do much of! Isn't he so cute!?!?!)