looking back {can be a good thing}

Tonight I went back in time - 2008 to be exact - and read some old posts I'd written at the beginning of this journey, including my very first post. 


Bittersweet. 


As tears welled (and continue to well) up in my eyes, my heart skipped a beat and my stomach turned as I was brought back to the fear, the unknowns, the grief. And as much as one would think I wouldn't want to go back to these days, how can I not. To me, they are the.most.important days to take it all in, to grieve, to be scared, to do whatever it is that one has to do to move on. Because it's the moving on part when things start to happen; and when things start to happen, it's when you can look back and realize how those fears truly do become simply amazing moments as you watch your deaf/hoh child learn to listen and then speak.


truly - simply.amazing.


and as I read my second post, these words stuck with me,

"Throughout my dad's dementia battle and taking care of him, I prayed for strength and God presented me with many obstacles, but I made it through. Was He preparing me for this? I'm guessing He believes I'm strong enough to take on Aiden's disability, and I will, head on, full force, and without a doubt, will be his strongest advocate; all while providing him with an atmosphere that he will always know how loved and special he is! I was meant to be Aiden's mommy and we will get through this - STEP BY STEP, DAY BY DAY."

I remember many days when I felt everything BUT strong; how I wanted to crawl back in bed and make it all go away, days I didn't want it to be my "new normal". 


then a glimpse of today: 

• {drama} "Mommy, mommy, mommy (insert fake cry), mommy, mommy the remote! (insert more fake crying) Where the remote mommy? Mommy help me. Mommy, mommy ..."
• {tattling} "Mom, mom, mom, MOM! Kailyn not give it me! KAILYN give it me! You have share Kailyn!"
• {hearing} "You hear that mommy? What's that mommy? I hear sound. What's that sound?" (and I have to listen extra hard to hear what he's hearing and think it's oh.so.cute how he still points to his ear like I taught him to do way before he was even a year old)
• {loves to hear} "Mom, mom! My CI! My CI falling off my ear! Help me mom." 
• {love.} "Yay! Daddy's home work!" (as he hears the front door open)
• {hide-n-seek} "I found you! You count now mom, I hide." 
• {LoVe} "I love you mommy! Gimme hug and kiss!"
• {tripleLOVE} "C'mon mommy, snuggle, snuggle." (as I try to get him into his bed)

and it's these simply.amazing.EVERYDAY.moments like these that I realize, I am strong enough now and I WAS strong enough then. This is by far a fly by night journey. Day by day, step by step has become our journey's motto ... and we still have a lot of work ahead of us. But because of this amazing technology, TONS of hard work, dedication, STRENGTH (through multiple avenues - mainly, CI/hoh parent support community), and unlimited HOPE, my profoundly deaf child is listening and speaking.

I recently received a message from another mom who is just starting this journey. She told me Aiden's story provided her hope. I cried. She made my day. This is what inspired me to go back and read some of my first posts. To go back and relive. I've been ecstatic about Aiden's recent progress, but have still had this piece of worry lingering in my mind. Going back and reading helped me realize just how far WE have ALL come, how much we all have grown. So THANK YOU. I needed these bittersweet tears, because sometimes, it is good to go back and remember. 


One of the first things that helped me in this journey was when our very first AVT, Dr. Morrison, gave me the following poem. I like to share it with others starting this journey as I think it's so important to know that it's ok to grieve, okay to be mad, but to also know in your heart, as you learn, as you grow, as you take those day by day steps, that the day will come when you can take a deep breath and smile. Just breathe. and smile. Because it will never be what you imagined and I promise, you'll be so glad you were the one chosen to experience it all ...

"God chose us to be Aiden's parents. How lucky are we."

and you wouldn't change a thing in the world ... because it truly is an AMAZING journey.

-------------------------

Welcome to Holland

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

A Walk Back Into Time

Tonight we found two old video cameras. Not that we didn't know where they were. 

Just didn't realize we weren't missing them until tonight.

My heart was taken back. You know, like when you hear a song on the radio

and it completely brings you back to the moment?

I was so scared.

and I didn't realize how scared I was,

until I was brought back to THOSE moments.

SO scared.

The days of trying to understand the words, 

"It's probably just fluid" to,

"Your son has profound sensorineural hearing loss" to

not realizing that what this meant was "Your son is DEAF."

The days of pre-hearing aids to

the days of hearing aids. and all the buzzing. and pilot caps.

The days I wondered and worried. 

wondered and worried and prayed. 

The days of the unknown,

clinging to every ounce of HOPE.

 HOPE he had hearing nerves.

HOPE he would be a good candidate for CIs.

HOPE one day I'd hear his laughter and he'd hear my "I love you's".

HOPE that ONE DAY he'd hear and speak.

HOPE that he would not be held back.

It brought me back to a time, not forgotten, yet left behind. 

My stomach turned, tears rolled down my face, 

as I watched myself performing AV strategies,

with a THREE month old

who probably didn't hear a word I said.

Yet, I smiled.

and cried some more,

then smiled.

Within minutes of watching, my heart dropped,

yet,

seconds later, filled with peace and happiness.

Because within those few moments of being brought back

to a time of the unknown,

it also proved to me,

JUST.HOW.FAR.WE'VE.COME.

every ounce of hard work.

every.single.day of reading book after book,

every.single.day of BELIEVING.

every.single.day of singing song after song,

and narrating every little thing I did,

every.single.day of working so hard to introduce as much

spoken language and listening opportunities as possible,

to our DEAF child,

made a difference.

because our DEAF child IS HEARING AND SPEAKING!

hearing.and.speaking.

and going back tonight, to real time

of what seems so long ago,

has made me realize, 

JUST.HOW.FAR.HE'S COME.

just how much,

HE LOVES TO HEAR.

just how much,

HE TALKS!

just how much,

OF A TROOPER HE IS

because even with three plus years of appointment after appointment,

and still many more to come,

he continues to be one of the HAPPIEST kids I know.

and reminds me just how much this journey truly is

 SIMPLY AMAZING.

Right after watching the videos, I put on Aiden's pajamas,

which I always take his CIs off and he can't hear a thing.

after pjs, we usually only put on one CI,

(to verify how he's hearing with that CI alone)

and for the first time ever I asked,

"Aiden, do you want just one CI?"

and he replied,

"No mommy, two please."

Two Years Hearing

I will never forget the day I held Aiden in my arms, just hours after his "profound hearing loss" diagnosis. I muted the television as I called for Ryan. As I waited, I sat in complete silence admiring my sleeping baby, then looked back up at the tv. I will NEVER forget that moment. My stomach completely churned as I sat there and watched the people on tv, their lips moving, - I could tell they were arguing, things happening all around, yet I heard nothing. It was then that Aiden's reality hit me - his world was SILENT. My heart raced, dropped into my stomach. I felt sick, like I was punched in the stomach. I couldn't fathom my son in a silent world. My mind raced - he may never hear my voice, and just the same, I may never hear his. This couldn't be happening.

I was TERRIFIED.

Today, as I look back over Aiden's hearing journey, I take a long deep breath. It's been a long haul, some parts of the journey smooth, other parts bumpy, we've hit dead ends and forks in the road with no clue which way to go. It's been full of running to nonstop appointments; understanding his equipment, mapping sessions and FM systems; attending seminar after seminar learning all about Aiden's world and HOW to speak to our son in order to create a language rich environment; then add in daily Ling checks and learning to listen sounds and experience books. Overwhelming to say the least.

Most of all though it's keeping HOPE and FAITH, knowing our son will hear and speak, that he will attend mainstream school and be as much a part of this hearing world as the rest of his hearing family. We know the "equipment" alone will not accomplish this - it is up to us, his family, to TEACH him, to guide him, not only to listen and to speak, but to cherish the beautiful sounds our world has to offer.

and that's what we've been doing, as his family, for the past three years - taking each day as a new day, step by step, showing Aiden the way.

So today, when I think back over the past three years (two years hearing), I cry. Not tears of sadness, but tears of complete and pure happiness. This journey is not a sad one - it is a JOYOUS one - as we watch Aiden discover new sounds, speak new words, SING, and DANCE. This journey is not an easy one - it is a lot of hard work - but every ounce of effort, every sleepless night, every bit of research to find new language and listening activities is worth hearing that sweet little voice. This journey is not a sprint - it is a marathon - and we still have a long ways to go. This journey is - SIMPLY AMAZING - as we watch Aiden do things every.single.day that at one time, we thought he'd never do.

In honor of Aiden's two years hearing (which was actually March 9th -just catching up), I've attached some of my personal favorite SIMPLY.AMAZING Aiden moments. Smile with me as you watch just how far our boy has come in his hearing journey. We are so proud of you Aiden Robert!

Aiden's First CI Activation

Four Months Hearing - Aiden's First Word

10 Months Hearing - Face Parts

13 Months Hearing - "Ryan"

18 Months Hearing - "It's Stuck"

22 Months Hearing - "How are you?"

Two Years and So Thankful

Two years ago today, at 10 1/2 months old, Aiden was simultaneously implanted with the Nucleus Freedom Cochlear Implant. The surgery took nearly five hours. It literally was one of the hardest, most nerve wracking days of my life. When it was over, I held my baby in my arms and saw he was okay; it was only then that the ton of bricks on my chest started to disappear. My deaf child was provided the gift to hear and I knew the day would come when he'd hear my voice and I'd hear his. The day was bitter sweet in every aspect.

The following is from Cochlear's website on Graeme Clark, the wonderful man who invented Cochlear Implants.

"In spite of the problems and criticisms, I just had to go on. A cochlear implant was their only hope of ever hearing.” --Graeme Clark

That was Professor Graeme Clark’s way of thinking—never give up on finding a way to help the profoundly deaf hear.

It was his deaf father’s struggles that ignited this determination. Professor Clark grew up seeing the hardship of living in silence—including the frustration, anguish and resulting isolation. He also witnessed his father’s desire for a greater connection to others, and was determined to make it possible.

From the bottom of my heart Mr. Clark, I thank you for your perseverance, determination, and HOPE.

Everyday.single.day, as I listen to that sweet little voice, as I watch him run from me as I call his name, as I see him get all excited hearing the door open as daddy comes home, as I listen to him imitate cars, and trucks, and trains, as I hear him talk to his brother and sister, as I watch him DANCE and HUM to the music, as I hear him discover new sounds, as I hear him say his prayers and tell me "Wuv ew mom", as I hear him LAUGH,

I thank you.

The Simple Things

There's not a day that goes by that we don't appreciate the miracle of Cochlear Implants.

Nearly everyday I have a a story for daddy or grandma about something Aiden heard or said.

Then there are some days, like today, where I'm completely nonstop,

running from appt. to appt., that I realize, it's truly about the simplest things.

The simple things, in the moments of craziness, that make me stop and cherish;

yes, completely STOP and CHERISH;

the teary eyed moments;

the moments I SMILE and WHISPER, "Thank you God."

Such as today,

when my phone rang (old style ring tone) and he pointed to his ear, HUGE SMILE on his face,

and belted out, "I erd at! Hewo!"

when I asked him in the car, without turning around, "Aiden are you hungry?"

to which he replied, "NO!".

"You don't want to eat?", I asked again. "No, no, no, no, no!"

when, moments later, I spelled out S-T-O-P (without saying the word), to which he yelled back, "STOP!"

and just seconds later as we pulled into the drive, "Yay, house!"

(again, this was after being gone all afternoon at appts)

when I sang to him as we drove to therapy and he told me, "No",

which I ignored and continued to sing, since "NO" has become the word flavor of the week

(and let's hope it loses its flavor and doesn't last much longer).

Then when I didn't stop, he tore off his CIs and gave me his first true shit eating grin.

Ya. Tell me I wasn't trying to hide my laughter.

when I called his name from the kitchen as he sat playing Wii in the family room with his big sister

(great language opportunity btw).

He turned to look at me and I said,"Daddy has your bath all ready."

To which he jumped up, ran down the hall to head upstairs,

and I said, "Aiden wait. Mommy needs a hug."

To which he turned around and ran to give both his sister and me a big huge hug.

Yep, it's the things that can seem that simple,

that really aren't

that simple.

Seriously?!? 18 MONTHS!

I looked up at Aiden's time ticker the other morning and was taken aback when I saw it read "18 MONTHS since his FIRST ACTIVATION". Has it really been that long? It seems like yesterday that my little binky boy was being fit for new ear molds or that I gave him a kiss as his daddy followed his CI surgical team into the operating room, or that our little monkey pointed to his ear and smiled as he heard his first sounds with his CI during his activation.

and here we are today, 18 months into his hearing journey, and Aiden continues to amaze me every.single.day.

I know I've mentioned this before, but being one of the best pieces of advice I was given when I found out Aiden was deaf, I found myself thinking of it again. It was from this wonderful mom, whose daughter "Toes" is such a huge inspiration to our family. In her email to me (which I still have) she said,

"... do not let his deafness define who he is, but just as important, do not let it define who you are either."

I get teary eyed every time I quote it as it feels like yesterday that I sat crying, reading her words of encouragement and inspiration.

So 18 months into our journey, I think about this advice, and I look back at how far Aiden has come, how much progress he's made. I think of his expressive and receptive language capabilities, how much of a trooper he is being toted from appointment to appointment, how at any given time in our household you can hear someone saying/explaining something to Aiden and how our house has become such a language rich environment ...

and as I contemplate all this, I realize it's not easy to NOT define who he is with his deafness - with all these appointments, all these therapies, all these language assessments of where his scores fall looking at his chronological age and hearing age, all the planning of what workshops we'll attend next and which preschool he'll go to, etc, etc.; all this constant language and making nearly everything we do a meaningful experience ... all for Aiden.

and sometimes I have to stop myself, and remember this wonderful advice. Because it IS so easy to get caught up in the day to day activities, appointments, therapies, experiences that revolve around Aiden's hearing loss. I have to remind myself, Aiden is my baby, my two and a half year old sweetheart, and just like his sister is not defined through the glasses she wears, Aiden will not be defined through his hearing loss.

So instead of throwing numbers out there of how many words Aiden is speaking, where he falls on the Ski-Hi and the REEL-3 language development scales, I'm going to celebrate his 18 months of hearing on how we define Aiden.

AIDEN ROBERT

Adorable. Have you seen those baby blues? He is always SMILING and LAUGHING; he is the happiest child, and for this, I am most thankful.

Inquisitive. Which leads him to exploring how things work, which leads to taking them apart, and is a.k.a. getting into every.little.thing.

Daddy's little boy. When dad's around, no one else matters.

Energizer bunny. The boy NEVER stops, he is always on the go, that is unless mom puts on Mickey Mouse Clubhouse.

Never meets a stranger. There's not a shy bone in his body; he's all about high-fives, hugs, and handshakes.

Really SWEET, SILLY, and SASSY, in no particular order, just the right mix of each.

Organizer. As he cleans up or plays, he likes things in the right place. In fact, he can be a little overly sensitive if things aren't sorted correctly, yet this same boy can destroy a room in less than five minutes.

Builder. Our future engineer. He LOVES to tear things apart, figure out how they work, then build them back up.

Eager, engaged, and enlightened in everything he does (including his therapies). He loves to learn and gets so proud of himself when he discovers/learns something new.

Rough houser. There's nothing better than a wrestle match with Ryan and let me tell ya, Aiden's one tough cookie!

Thinks everything out, quietly analyzes situations, and doesn't give up until he figures it out.

This is Aiden. and it is these definitive qualities which make him the boy he is. Yes, he wears bilateral cochlear implants, which are life changing. and yes, every worry, every tear, every skipped heartbeat, every mile driven to appointment after appointment, every moment getting caught up in hearing loss, is worth every milestone he reaches.

It's his vibrant personality, his determination, and will to succeed though that lead him to continue to discover, continue to ask, "Was at?" as he hears a new sound. It is all this that will lead him to success.

and for him, for his wonderful self, AND for cochlear implants I am forever thankful.

Happy 18 months hearing Aiden!

Happy First Hearing Birthday Sweet Boy

(turn the music off on the left before hitting play)

Quiet Time

This morning,

Aiden and I walked his sister to her second day of third grade.

Then came home and drove his brother to his first day of eighth grade.

When we returned home,

we played baby,

and read a couple books.

We practiced the Lings,

and just lounged around a bit.

It's my second school year as a stay at home mom.

I miss my job, my friends, and meeting new students,

but I am enjoying my children,

like I never have before.

I feel blessed,

and am very thankful.

Aiden is taking his morning nap.

Floors are swept, laundry is done.

House could be vacuumed,

and I should start planning dinner.
Nah.

The house is completely silent.

It's been a busy, yet very fun summer.

So I think I'll just enjoy these first moments,

by myself,

doing what I want to do,

engulfed in silence.

LIFE IS GOOD ...

... this is on a coffee cup I drink from every morning. One of my fourth graders gave it to me my last year of teaching right before my dad passed away; right before Aiden was born. She gave it to me as a Christmas gift in 2007. I didn't realize at the time, what a perfect gift it truly was.

The last few weeks I've thought and thought about 2008. So much hit me ... from a parent's death to new life to a move across country to starting a new life in a new area to a son going through puberty and a daughter wondering why all this is happening. A year of wonder, laughter, unanswered questions, sadness, joy, smiles, relief, new adventures, and so much more.

I can't say that 2008 was a HORRIBLE year - did pieces of it suck? You bet! It started out with my father's death in January; I still cry at least once a week missing him. But it's getting easier, day by day. I can't base 2008 after this though. He was sick with dementia for many years before this, 2006 & 2007 being his worst years. By January 2008 we took him off all medications and just let him be. Let him not get poked & prodded anymore. And in January 2008 he was set free ... and his family was by his side as he made his journey. We gained a guardian angel that day. Oh how I miss him! Damn how I miss him!

From there, two months later, Aiden was born - DEAF. Just when I thought I was picking myself back up - BAM - I was knocked back down. I cry still missing my dad, but I cried harder back then, for Aiden ... or really, realizing now, for me. I was devastated in a way I've never been devastated before. I was MAD. I was ANGRY. I was PISSED. And I didn't understand why all this was happening to me.

At that point, I went full force. To do everything I could to learn about this "deafness" I never even thought twice about happening to any of my children. But it did. And we dealt with it. Or should I say, we're dealing with it, pretty well I'd like to think.

We had a team that changed our view on what it means to be born deaf today. They provided us hope, wisdom, and faith. They taught us. Our team became our family; our strongest advocates, and I can't thank them enough for all they've taught us. I also met a wealth of moms on the web who were experiencing the same things I was as a parent of a deaf child(ren). A whole new group of friends, who just "get it".

On top of this all, my better half (really, he keeps me calm and so much more), who is a very morally right person, especially when it comes to his job, decided it was time to move on due to lack of the same morals from his upper management. And so, after 12 years, we uplifted our family, sold our house, packed our belongings, and moved across the country. Even though it was better for him, and in turn, better for us as well (because I've experienced first hand - if a man's not happy at their job, it's hard for them not to bring it home), we sacrificed the "material" life we lived for a happier one. The crazy part about this is getting the surgeon I wanted from day one to implant Aiden. We were meant to be here. No doubt.

In our new place we're still going full force and have found a new team for Aiden. Aiden's "therapy" has become part of our life. We talk to him in AVT (auditory verbal therapy) and he's getting it.

I can't say that 2008 was a horrible year. It had definitely been a very stressful one; one which I shed A LOT of tears; one with a lot of questions "WHY?", especially after Aiden's diagnosis when I thought I was going to break. But Aiden made me keep on keeping on. He changed my world - Aiden that is, along with a lot of faith and realization that my world is so not perfect (thank goodness, cause then it'd be boring right?!?)

Now I look back at 2008 and yes, I will always remember this year as the year my dad passed away, but first I will remember it as the year Aiden was born ... actually, I'll probably remember them both right together. But that's okay. Can it truly be a horrible year when my third child was born? Aiden filled that "grandpa" emptiness inside us all and his deafness has taught us so much. He continues to amaze us and entertain us everyday. He is such a happy baby, always smiling, always entertaining, always so ... AIDEN!

EVERYBODY LOVES AIDEN!

He makes our hearts melt, makes us smile, makes us laugh, makes me just cherish every moment I get with him. I am so blessed that the Lord gave him to me! He changed my world in 2008 ... and that alone, makes life good.

The other side of that coffee cup says, "Do what you like, like what you do".

And I do. I'm home now, through financial sacrifices, with all of my kids. I take Aiden to his appointments during the day so they don't interfere with my older kid's schedules. I get to work with Aiden everyday teaching him to listen. I get to be home when my older "lovelies" go tp school and then come home and they're just loving it.

Yes. I like what I do.

YES, Life is Good!

Happy 2009!

Six Months Old!

Aiden is six months! I can't believe how fast this time has gone! Where has it gone??!!?? I feel like I just had my binky boy yesterday! Well, he officially turned six months on Sept. 17th, but I just haven't had time to post about it with everything in transition.

Here is a video I put together to look back at the last six months and where we've come. Remembering back, I felt so lost, so scared, so angry. That's changed. A little anyway. I've definitely come to terms with my binky boy's hearing loss and have taken an active stance in finding out all I can about it. I know now that I want to help other people. I know I don't want other moms feeling as lost and helpless as I did. I know there are a lot of families out there who need to be educated how important follow up tests really are. I know I want to make a difference. I know I will do everything in my power to provide Aiden a hearing world. I'm still scared, scared for the days when he cries to me, when he's sad about being "different", when he's scared. But I know too, at that time, I will be strong for my boy, just like I am today. And although I may be shattering with grief inside at these times, he will never know it. He is my strength, and I can only hope I will be his.

(STOP THE MUSIC AT THE SIDE TO VIEW VIDEO)

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