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."

JTC - A Letter to Aiden - Days 1 & 2

I am in complete awe. This place is AMAZING. What makes it that way are the people. The teachers and the staff are absolutely phenomenal; what completes it, are the families who come from AROUND THE WORLD. Each family with their own story, their own journey, their own challenges and advice ... ALL with a similar means to an end.

I talk and I share, but even more so though, I do what I work so hard at teaching my deaf child to do, I LISTEN. I've thought about how to share this amazing journey, and all I keep coming back to, is that I want this to be my words to Aiden. So I'm going to mix it between writing him letters, through this blog, and documenting key points to share. One day I hope he'll read this and understand how much of an impact three small weeks can have.

In these letters though, I will highlight some key points that may help some of you as well. If there's anything I've learned in this journey, is that we are not alone. We have to help each other.

Dear Aiden,

Four days ago I packed up many bags to embark on a journey across the good ol' US of A with you and your sister. I knew from reading other's stories, that I, as your mother, needed this, not only for you, but for myself, and our family. This place is amazing, and in the two short days we've been here, it has already impacted our lives.

Your daddy and I decided to bring you here for further evaluations, for a second (and truly a third or fourth) opinion from professionals who have been working with deaf/hoh children for many, many years (over 60 years I believe). We wanted to learn not only from these professionals, but even more so, from the families who travel from around the world with a similar goal for their children.

You have been hearing now for two years and four months, and every single day you amaze us. We still have our worries, and honestly, we probably always will. We came here to get a fresh perspective, to learn how to best help YOU, because YOU have your own story, your own journey, and we're searching for unanswered questions; answers to questions to help us help you soar.

I knew coming here would mean meeting families from around the world. AROUND THE WORLD. What I didn't know, is how much these families would effect me, even in two short days of being with them. It has already been a roller coaster of emotions as I have sat and listened to each their stories, each of their struggles. Every story is different, yet the same. Every story though, has the same plea, to help them better help their child, to reach out to find answers, and understand, and learn ... not just about learning to listen and speak in general, but learning to listen and speak in EACH.AND.EVERY. INDIVIDUAL SITUATION.

SO, what do I want you to remember from the past few days? Here are my highlights:

• You LOVED the plane ride! We were up at the crack of dawn to catch a 6:30am flight out of Cleveland, with an hour layover in DFW, until we finally arrived in California at 10:40 a.m. - (three hour time change = one tired mommy and two hyped up kids). Oh, and by the way, the only time you slept was 15 minutes before we were due to land in LA. Nice.

• We're staying in university apartments, yes, where college kids stay during the school year. Makes me want to go back to the day. So much fun, so little luxury. No tv, no microwave, old carpet, and twin beds. The only thing I'm missing is the keg (nevermind that). I pushed our twin beds together though to make a king size bed for all of us to sleep together. Perfect.

• Again, families are here from around the world - France, UK, Canada, UAE, New Zealand, and all around the United States. The staff at John Tracy says this is one of their biggest groups with so many spouses together and one of their biggest sibling groups ever. Although your daddy is not with us right now, he will be here soon. I gotta say, it's great to hear all these dads talk and open up; you'll understand why I say that one day and I wish your dad could be here now.

• Kailyn ventured with us. I wanted to bring Ryan too, but, at 14, he was too old for the sibling group (age 12 is the cut-off), and they wouldn't allow him to participate in the parent classes. It was hard to embark on this without him. He's with daddy for a couple weeks, then heading to Texas to visit friends for a week. He assured me he'd rather be in Texas than here without much to do. Your sister has been QUITE.THE.TROOPER. I am SO proud of her and all she has done to step up and help, both of us. You my son, are lucky to have her, and so am I.

• One of the BEST things about this whole trip is that we are here with your friend Thomas and his mom. I met her before we left Texas, when you and Thomas were just a few months old. We only met once and instantly connected, we were all we had. We kept in touch through email and many therapeutic phone calls. Three years later, we're all here together, getting to truly know each other, although it feels like I've known them forever. and Thomas has a sister close to your sister's age and of course they're girls and already best buds. I know a time will come where we'll all be together again and you and Thomas will be up all night playing video games and talking nonstop while your moms sit and laugh about all we went through to get you both to hear and speak and now can't get you to shut-up. ; )

• Your first day of class was great. You didn't have any separation issues and you joined right in. You are always shy, and don't like to use your words as much around new situations, but your teacher Betty told me you had good conversational speech with another little boy in your class. I think it's the perfect fit for you.

• By day two, you already knew a lot of the kids names in your class, your teacher's name, and one of the teacher's aide's names. I'm so proud of you! Thank you teachers for making an imitation booklet of "Brown Bear, Brown Bear" with the teacher's and kid's pictures.

• Mommy is worn.out. Not only from the trip and three hour time change and the stress and the overwhelming sense of just being here, but even more so, from meeting so many families, and hearing so many stories. The stories and the whole atmosphere has been emotionally draining ... in a very emotional happy kinda way.

• I miss your brother Ryan and I wish so bad he was here. One of the things I've learned throughout your short three years of life, is this isn't just your journey, it's our family's journey. Being here without Ryan, and your dad for a couple of weeks, seems incomplete. Dad will be here soon, I just wish I would've pushed more for Ryan to be here as well. As much as he doesn't admit it, this journey greatly affects him, it's one of my biggest struggles. Just another reason we're here. I really miss him.

The biggest thing that sticks in my mind from the past two days, "We want to learn from you - the parents, because you (the parents) are the true professionals." Do you know how little I've heard that throughout this journey?!? The staff here has repeated this over and over again. They are one of very few professionals who have ever admitted to NOT knowing MY child better than I do; the only ones who have told me,

"The parent is the most important team member."

Amen to that.

Other key points I took keen note to are:

• The staff is here to help you figure out the challenges holding your child back AND their strengths to help them overcome these challenges.
• The staff is here to work as a team (OT, family/child/marriage counselors, speech/language therapists, teachers of the deaf AND the parent) to come up with a plan specifically tailored for YOUR CHILD - not a "one size fits most" type of plan. They will look at social/emotional, sensory and motor, communication, self-help, and cognitive abilities.

More than anything though Aiden, I want you to know that I think you are such a trooper. I see that your hearing loss does not hold you back and that you do not give up until you get your desired results. You my son, are SIMPLY.AMAZING. and I couldn't be more proud.

To end, I have to quote from your sister,

"I'm so glad Aiden is deaf."

to which I looked at her, with a smile, because I knew exactly what she meant.

"Because if he wasn't deaf mom, we would never be here in California learning and making all these great friendships from all over the world."

What a great life experience you've brought to many honey. and I wouldn't change anything about you for the world.

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.

Reliving the Reality

I have a new meaning for IEP - Intense Emotional Process.

Most of last week and much of this weekend were spent preparing for Aiden's IEP this Monday. I know I have totally skipped over posts on things we've gone through in transitioning from an IFSP to an IEP, prepping for his IEP, preschools we've visited (and what we looked for) checklists we used when visiting these schools, the school chosen and why, etc. I can only say that my life lately has been absolutely nonstop between three kids and three different "opportunities" I'm tackling between them. I will say that Aiden's IEP is not the only one I'm preparing for, but I'm hoping it's easier than the fight we're going through to get Aiden's sister the appropriate accommodations/services she deserves.

Bottom line: it has been a very emotional week, and honestly, I'm quite spent.

In preparation for his IEP, I spent a morning and afternoon putting together a timeline of events from Aiden's hearing journey (from failing the newborn hearing screen to a synopsis on mapping issues this past year). I also included his speech/AV therapy timeline, his gross motor timeline and a paragraph on his sensory integration, especially since these all still need attention. I am so thankful for this blog as it physically made this task much easier.

Emotionally, it wore me out.

As I found dates throughout past posts, I read. As I read, I relived each.and.every memory, each appointment, each bad day, each milestone. I relived the feelings of complete numbness from when we found out Aiden was deaf to complete fear from all of the unknowns to complete worry of how he'd be treated having to wear this equipment throughout his life. I relived the feelings of complete relief from when I held him after his surgery to complete awe the day he heard his first sounds. As memories and feelings resurfaced, I cried. I cried tears of sorrow. I cried tears of joy. and then I cried with the overwhelming sense of it all.

This whole process has brought back to reality, like a slap in the face, "My son is deaf," and it's scary.

and all the fear for my son that I had in the beginning, that I thought was under control, has resurfaced and I realize how much of it still lingers inside wondering what the future holds for our "binky boy".

After my walk down memory lane, I moved on to write a page to the IEP team introducing Aiden. I want this team of educators, psychologists, and therapists, who will be part of our team in making decisions for Aiden, writing goals for Aiden, teaching and working with Aiden, to know WHO AIDEN IS as Aiden, not as a deaf child who wears cochlear implants.

I didn't hold back. I got emotional, but they need to know, Aiden is our child first, their student second. We will not hold back, as Aiden's parents, in fighting for everything we believe will benefit our child. We want them to know, we have our own goals for Aiden, goals which we call HOPES, that can't be measured or written into any IEP.

and here's what I wrote:

Introducing Aiden

Aiden came to our world on March 17, 2008. He was born in Texas where we lived for the first 7months of his life before moving to Maryland and then a year later, to Ohio. He is the youngest of three. His brother Ryan is 14, and sister Kailyn is 10. He adores his siblings. He also likes to talk about his two cats, Baby and Bones, and dog, Bella.

Our Favorite Aiden Qualities

Aiden is a very bubbly, go with the flow child. He is always smiling and is very affectionate. He can be quite shy when put on the spot and has never been one to participate much in his therapies. He's always had a quiet disposition and can be a boy of few words, yet in the same breath, he talks nonstop at home, but on his own terms. He loves playing with nearly any toy, but his favorite toys have a means to an end. He loves building with blocks, tearing things apart only to piece them back together, and figuring "things" out. To him, everything has a place and it needs to be in the right place--he is our future engineer. He catches on quickly to things and truly is a bright child. He loves Mickey Mouse, m&m's, oranges, chocolate milk, and his mom's iPhone. He loves playing with other kids, is good at sharing, and loves to help. All in all, Aiden is an easy child to get along with and has a delightfully addictive personality.

Our Hopes for Aiden

Our biggest hope is that people do not define Aiden for his hearing loss,

that he is not identified as "a deaf kid with cochlear implants",

but is defined for who he is as a person.

We hope Aiden's preschool years offer him a solid foundation of communication, language,

listening skills, literacy, and self advocacy.

We hope all this will allow him a smooth transition into a mainstream school with hearing peers in a setting with minimal interventions. His hearing loss will not hold him back.

We hope to help Aiden build a strong positive self esteem and instill a realization within him that he can achieve anything he puts his heart and soul into.

We hope he comes to believe that his opportunities are limitless.

We hope Aiden continues to keep his upbeat, positive, happy-go-lucky disposition and that rude comments/bullying does not tear it down or change the person he is.

We hope that Aiden will play alongside hearing peers and not feel (or be seen) differently because he hears in a different way.

We hope Aiden will learn to advocate for himself and never feel held back.

We hope that Aiden SOARS - and he will.

Realizations

I've told myself before even starting this post, I need to be brutally honest with myself. Sometimes the truth hurts and sometimes it's just a good eye opener to reality.

The day we fitted Aiden for hearing aids, they told us not to expect much from him in the means of seeing reactions - he had a profound loss, he was DEAF and they probably wouldn't do much. It tore me up inside. I wanted my baby to hear my voice NOW not later. I refused to believe them and I fed my child every ounce of language and all the listening opportunities I could. I became a walking auditory verbal model. I put his hearing aids on when he woke up and took them off when he slept; and after a month or so of still not seeing a reaction, I didn't quit. At Aiden's first soundbooth, post hearing aids, he tested around 80db across frequencies. By the time he was 9 months old, they questioned holding off on his simultaneous CI surgery as he was testing up to 50 db across frequencies. HE LOVES TO LISTEN.

Before Aiden's CI surgery, I set up a schedule with our audiologist for Aiden's multitude of mapping appointments. I wanted both ears to be activated at once, she did not feel comfortable with that want. In fact, there was a seven week gap between activations. Our audiologist provided a good explanation of how she wanted to be conservative and make sure Aiden adjusted to his first "new ear" before mapping the second. I took a deep breath and trusted her. After his first two mapping appointments, within the week, Aiden tested at 25 db across frequencies and we moved up the second ear activation by over four weeks. HE LOVES TO LISTEN.

In therapy, I was told not to get too excited in the beginning as it would take quite some time to see results. "His ears are like a newborns."; "He's only one month hearing."; "Give him time." Within a month he was turning to his name. After two months of bilateral listening, Aiden was saying, "mama", repeating two of the Lings, understanding the word "no". HE LOVES TO LISTEN.

Throughout much of our journey, Aiden has been a rockstar; awing his team of professionals and showing them just how much he truly does love to listen.

That's why it has been SO HARD the last four or five months seeing my boy go from leaps and bounds to an almost complete standstill.

I've said it before, but I'll say it again, they say you shouldn't compare your child to others, but, oh well. We all do it. I saw how other munchkins activated around the same time as him were really starting to talk. I took it with as much ease as a mom who's main agenda is to get her deaf baby to talk, can. The worry grew as I saw my baby not only NOT talk, but lose some of the few words he had. Even scarier though was that the only lings Aiden used in babble was the ah and m ... no ee, oo (I was okay with no s, or sh, as these are high frequency sounds and typically come later). And we were 7 months past his first ear activation.

Fast forward to November and Aiden's speech evaluation at his school. At this point he is 8 months post activation and receptively tested at five months! I drove home in tears. Aiden's audi came back from maternity soon after and between her and Aiden's school, we found out his map was VERY off. We also found out that he had some sensory integration issues and additional OT issues. I felt like I was going to break down. I had worked so hard since this little man was brought into my world and I didn't know what else I had in me. I felt we were back at square one.

We're now in February - almost 11 months post activation of the first ear and we have about 12 words consistently used in context; only have the /ah/ and /m/ for lings (although for a whole two weeks he walked around saying "sh", but "sh" has since disappeared); he still does this horrible nasally deep breath like he's gasping for air sound (yet, not near as much as he used to); and he still isn't bee-bopping to music like I thought he would by now. Receptively though, he's rocking right along. Yet I still CONSTANTLY WORRY. I think I always will.

Since our move to Ohio from Maryland, we've met with our new AVT and today we met our new audiologist. Both, highly recommended professionals in their league. Both told me the same thing our wonderful audiologist back at Hopkins said,

"He's responding to all the lings at good levels across all frequencies, he shows he understands receptively, he's only 10 months "hearing", he has a wonderful personality, no he doesn't have much of a vocabulary, BUT I'm not worried about him because I can tell ... HE LOVES TO LISTEN!"

Since I have left Maryland, and after hearing our new team's assessments of Aiden, I have made some HUGE realizations:

I really need to take a step back and READJUST ... not my expectations, because I will always carry high expectations for all of my kids ... but my FAITH - in myself and what I do not only as Aiden's teacher, but as his MOTHER.

To start thinking first in terms of how far he's come - of the POSITIVES; and not of what he's lacking.

Aiden's world doesn't have to be all about therapy all.of.the.time. Yes, we make each moment a teachable one as much as possible, but it's okay to LET IT GO now and then ... in fact, I'm finding out it's quite healthy.

Each kid is their own kid and will perform when they are ready to perform. I can't compare. Aiden is Aiden. He will do his thing when HE is ready.

Remember that everyday this boy makes me smile, makes me laugh, and there's not a day that goes by that I'm not SIMPLY.AMAZED.

My son IS A ROCKSTAR. He may not have a vocabulary that I WANT HIM TO HAVE yet, but he's doing such a phenomenal job listening! What more could I ask for from my DEAF CHILD?

He will dance when he wants to dance. And I will.not.stop playing music videos, dancing, and singing my heart out to him.

He will say some form of "shoe" (instead of grunt) when he's ready to say "shoe" and by golly, after all the silly monkey sounds, tapping on my "tEEEEEth" and "bEEp-bEEps" I've done, one day he'll screech out that "EE".

He will SAY some form of his brother and sister's name because I will continue to repeat it over and over and over again until he does.

He will get the /p/ and the /oo/ and the /ee/ and put them all together yelling "POOPEE" throughout the store at the top of his lungs ... and as he does, I'll just laugh, knowing I worked on all three of those damn sounds since the summer of 2009!

One day, it will all come together, and when he's ready, he will explode, because my boy truly does,

LOVE TO LISTEN.

Sensory Integration

I started this post before Christmas and am just getting around to finishing it. I have so much to catch up on with Aiden, but wanted to make sure this made it as part of his journal.

In December I received an email from the wonderful OT at Aiden's old school with his Occupational Therapy Score Results. Her and I had previously discussed what she observed and believed Aiden would benefit from a couple sessions of OT per week. At the time I was so busy with the holidays and our upcoming move that I pushed the email aside and let it be. I had enough going on, let alone enough of reading where my son lacked. I knew it wouldn't be that pretty, not bad, but not good, and I needed a break.

Well, after reading this post, from a very dear friend of mine back in Texas, I knew I needed to face the facts and open his OT test results. I'm glad I did.

A little history ...

Aiden has been receiving PT services from the county since he was first evaluated at three months old. He has always been behind in his gross motor skills, but seems to catch up, until it's time for that "next level" of locomotion. There has never been any concern though to get an occupational therapist involved. In fact, this past July was his six month review from our county and he tested within normal limits for all motor skills except locomotion (since, at 16 months, he still wasn't walking). I've never had concerns about his sensory integration, until after feeling I could have written this post from the same great friend, and asked his OT at his school to look at this as well.

Here is a summary of his test results (which was completed at 19 months of age and he is now 22 months):

Warning note - unless you're interested in each little boring detail, skip to the end ... I like to document all the boring stuff too, just in case it helps another parent going through similar situations, especially with the AWESOME reports we got from Aiden's school).

Gross Motor Skills

• Aiden is functioning at the 11-month level for stationary gross motor skills and at the 11 month old level for locomotion (he was not walking at this time, but is almost running now).
• Aiden is functioning at the 12 month level for object manipulation (ability to manipulate balls - throwing, catching, kicking - again, he's come along way since this).

Fine Motor Skills:

• Aiden is functioning at the 14-month level for grasping skills
• Aiden is functioning at the 15-month old level for visual-motor integration

Sensory Integration

First, a little bit of background on this. Sensory integration is the organization of sensations for use. Our senses give us information about the physical conditions of our body and the environment around us. The brain must organize all of these sensations if a person is to move, learn, and behave in a productive manner. Sensory integration refers to how a child processes and interprets sensory input such as touch, movement, visual, and auditory information in a purposeful and organized manner. When students receive inaccurate or unreliable sensory input, their ability to process the information and create responses is disrupted (Dunn, 1991)
To assess Aiden's sensory functioning, the Winnie Dunn Infant/Toddler Sensory Profile was completed by Aiden's daddy and me, along with clinical/classroom observations. There are three areas into which Aiden could fall:

• Typical Performance - indicate typical sensory processing abilities
• Probable Difference - indicates the child is performing between the 2nd and 16th percentile (representing 14% of the population sample).
• Definite Difference - indicates the child is performing like a child in the lowest of 2% of the standardization sample.

And Aiden's results:

Aiden demonstrates Typical Functioning in the areas of General Processing, Visual Processing, Tactile Processing, Sensation Seeking, Sensory Sensitivity, and Threshold.

Aiden demonstrates Probable Differences in Auditory Processing (go figure), Vestibular/Proprioceptive Processing and Oral Sensory Processing.

• Auditory Processing - hmmm ... ya, makes sense, he's deaf, it's what I work on day in and day out.
• Vestibular/Proprioceptive Processing - In a nutshell, these two units challenge the child's ability to respond to movement and understand his/her own body when it comes to interpreting gravity and movement sensations. This can affect muscle tone, equilibrium responses, bilateral coordination, spatial perception, emotional expression, and self-stimulating behaviors. This explains a lot. Aiden is constantly seeking vestibular stimulation, which is why he is constantly on the go and has no fear of the consequences of his actions.
• Oral Sensory Processing - Aiden has a hyposensitivity when it comes to this. He's a very messy eater, stuffs food in his mouth and pockets it in his cheeks, and we are always watching for him for what he puts in his mouth (from CI batteries cages to crayons to cat food)

Aiden demonstrates Definite Differences in Low Registration. Children with low registration fail to notice sensory stimuli in their environment; they tend to not notice what is going on around them and miss cues that might guide their behavior . It is said that children tend to appear uninterested and can have a dull or flat affect and possibly low energy levels (which is SO NOT Aiden, the boy doesn't sit still for a second!)

All this, along with the fact he's a typical, very hyper almost two year old, explains why Aiden has NO FEAR; why he climbs onto EVERYTHING (window sills, his sisters bunkbed, anything with shelves, table tops, counters etc); why he cannot sit still for even short periods of time (unless it's Elmo); why he can't focus on one activity, unless I'm sitting right next to him, and even then the activity is very short lived, which makes at home therapy VERY HARD; why he climbs up the couch and then hangs from the back of it and laughs; why he doesn't cry much when he hits his head; why he has such a high tolerance for pain.

All of these can have an effect on his receptive and expressive language as his mind is constantly working on overdrive to find the next best thing to get into. Along with this, having a high tolerance for pain can have a huge effect on a child's maps since they don't always show visible signs that it's just "too loud".

Aiden was making some wierd noises after one particular mapping session and about the same time, I read the post mentioned above. I called our audiologist and shared Aiden's OT report with her and inquired about him possibly having a high tolerance for pain. She got us in the next day and gave Aiden a "softer" program to work with and he's been doing much better ever since.

As parents to a hearing impaired child, we know all too well how stressful all the appointments, testing, and therapies throughout this journey can be. Since the day I found out Aiden was deaf, I have focused my energy on the one thing I wanted him to do the most - HEAR and SPEAK. I wasn't aware of terms like "sensory integration" and "proprioceptive processing" much less realized these could possibly be holding him back from learning just how to hear and speak.

With that said, we have a lot to focus on this new year. I feel like we're back at square one. Yes, we've come a long way since this time last year, but as we approach Aiden's first hearing birthday, I feel like we're so far behind and now have a couple more ingredients to add to our mixing pot.

Yet I look at the positives. Aiden IS hearing; he has a pretty small vocabulary, but by golly, he IS talking; and above all else, he is such a HAPPY little boy. We are in a new location, with new resources, and building a whole new team for our little monkey. I don't know the final plan yet, or what tomorrow will bring. We have a lot to learn. I do know we'll get to where we need to be when we're supposed to be there. Let's just hope it's sooner than later.

One of Those Weeks

When we started this journey over a year and a half ago I knew I was in for some extremely hard work, sincere dedication, and definitely a roller coaster ride of emotions. Eighteen months ago I watched all these videos of deaf/hoh children and they provided me great hope - tremendous hope that one day my son would babble, tell me "I love you", yell at his siblings, all because he could HEAR through the miracle of Cochlear Implants. I know they say "EACH CHILD IS DIFFERENT .... never compare your child to another ... blah, blah, blah." I TRY MY HARDEST NOT TO, but how can you not.

I'm down on myself right now and I hate writing these posts, BUT, I think the reality of having a deaf/hoh child is that you have these days, no getting around them. I have reasons for being Miss Debbie Downer right now, which I'll get to. I truly believed that by the time my son was this age that he'd be further than he is ... because I've watched the videos, I've talked to moms.

I attend Auditory Verbal Therapy with him, I've put my career on hold and have become his full time mommy/primary therapist, I take him to an oral school so he can be around hearing peers for a language model along with their awesome language theme based program, I have a TOD and PT come to our house every other week, I read other's blogs and talk to other mommies to get ideas, I work, work, work, and work with my son (I mean PLAY, PLAY, PLAY), all to get these dang reports that make me wonder if I'm truly doing enough ... and now I'm finding out that we need to integrate even more therapies into our days ...

... and it is SO DAMN FRUSTRATING!

It all started Tuesday. Aiden has OT right after his class to help him with his gross motor skills (they don't have a PT program at the school, but still wanted to work with him). After his OT services, the therapist told me Aiden is having some fine motor skill issues and would benefit from at least an hour and a half of OT services per week. Great. Add it to the list.

THEN on the way home I open up the audiology report containing Aiden's soundbooth results.

NOTE TO ALL MOMS ... FOLLOW YOUR GUT! YOU ARE RIGHT! NO ONE KNOWS YOUR CHILD BETTER THAN YOU!

As I've written in the past, I was not happy at all with Aiden's last soundbooth/mapping appointment back in Sept. Going from 15-20 db across all frequencies to 25-30db was not okay with me. Plus I felt he just didn't react in the soundbooth like he normally does. I didn't feel good about any of it. I brought up my concerns with the audiologist (which wasn't his typical one), but was told things were just fine, he's doing great, 30 db is wonderful blah, blah, blah ... and I accepted it and went home, knowing my little rockstar had been at 15 to 20db since his first soundbooth after activation.

I then brought my concerns to his school audiologist to get a second opinion. She took our case history and got Aiden in the soundbooth as soon as she could, but he wouldn't perform. Then he had three ear infections, the flu, and respiratory issues all within the month. Finally last week, Aiden was cooperative, but she wanted to confirm her results the following school day - which was this past Tuesday.

When I looked at the results on my ride home my eyes just welled up with tears. I had known something wasn't right. Aiden flatlined at 40DB with his left ear, and with his right ear was at 30db/500hz, 55DB/1,000hz, and no response from there on out. My stomach hurt.

THE NEXT DAY (yesterday) we had an appt. at Hopkins with Aiden's primary audiologist and his school audiologist joined us there. His soundbooth results were better, but not much. The results showed he definitely needed some program changes, especially in the right ear where he was getting very little high frequency sounds. All I could think of was how we had to move forward ... don't think of the past, it was over.

Let's hope it's fixed. He'll be tested next week at school to verify he's still responding and then return to Hopkins in three weeks to check his maps again. We left there with four programs, one for noise, and two additional ones to work with if we feel he comes to another standstill. So glad his audi is back.

FAST FORWARD to today, parent-teacher conferences at Aiden's school. As we headed there, I read over the three page typed report from his teachers. There were A LOT of positives and he has transitioned well into a preschool setting. He likes school. But there's so much he needs to work on. A small example:

• Aiden does not yet respond to peers who approach him without prompts from the teacher. While cruising around the classroom he requires prompts to shift his attention to notice where his peers are and navigate his way around them.
• Aiden rarely turns to his name when called in the classroom (noise factor?) His teachers often have quite a bit of difficulty gaining his attention.
• Aiden is not yet finding items on request and requires physical prompts to follow routine directions.
• Aiden has difficulty attending to teacher directed activities even for a brief period of time (ex. reading a book).
• Aiden has very inconsistent visual attention to fine motor tasks which makes it more difficult for him to complete these tasks and sometimes requires cues to look at the toy while he plays.

I can't help but look at this, plus others that were listed and cringe. One part of me thinks I started him too early in school ... he should be at home with me. But then, how much farther would he be behind next year or the year after? The bigger part of me KNOWS these concerns need to be addressed now. He needs to start learning NOW to compensate for his hearing loss and learn how to be successful in an oral, mainstream classroom, with noise. I want him to learn these communication/cognitive/social development skills NOW as to not further delay him in his hearing and speaking.

All of this has been such a huge reminder that my child is DEAF and even with Cochlear Implants he is going to have challenges ... not just now, but always. and today, I.hated.it.

I couldn't take anymore. We did discuss ways I can work, I mean PLAY, with him at home to help in these areas, but I'm feeling so spent. We're all hoping that a lot of these areas are due to his not hearing very well the past couple of months and that this revamp in his maps will increase his activity in the classroom as well as with his language.

THEN on the way home I opened up his Speech and Language Evaluation. Why do I do this to myself?!? I'm not even going to go there now. I'll write about it after his IEP meeting next Tuesday. I'll just say they weren't great. Definitely not what we see at home and reinforced my son is having trouble communicating in a group setting.

To end my day, I had a Dr. appointment for Aiden's sister to start her on ADHD meds (this is after a full evaluation including IQ and cognitive tests etc). By this time though I was done with any type of "test" results. While we were there I had them perform a basic hearing test (beeps and headphones) ... I wanted to rule everything out. Well, she was at 20 db in her left and at 40db in her right?!?! The Dr. said it could've been an attention issue. The test took five minutes, I know she has trouble sitting still, but not for 5 minutes! I have an email into our audiologist.

To overcome the whole day, on the way home we turned up the tunes, and JAMMED the whole way home ... SINGING our hearts out. I needed that. and the glasses of wine haven't hurt much either.

Welcome to Holland

When I first met Miss Helen (one of Aiden's first AVT's) she told me about the poem, Welcome to Holland. Whenever I read it, it reminds me of how in the beginning I really wanted to be in Italy, and still, on not so good days, would rather be there than "Holland" too. Believe me, I truly wouldn't change Aiden for the world and this journey is so amazing, but fact of the matter is, it isn't always the easiest, and there are days I want to give up, crawl back in bed, ignore it all, AND get back on the plane and demand they take me to Italy - NOW. Today was one of them. But I don't. I can't. Those precious baby blues, big ol' smile, and sound of "maaaaam" keep me going. Who could resist?

Then I get a phone call. I received a call tonight from a mom in Texas whose sweet baby girl didn't pass her newborn hearing screening. She's now five months old, has been wearing hearing aids since about six weeks old, is in AVT, and well on her way. We talked about the devastation felt when hearing the words "didn't pass", the "friendly", yet very awkward remarks on how "things could be worse" from family and friends, the "I'm so scared" of what's ahead. This is what I wanted from the get go ... to help newly diagnosed families in any way possible-it's what I love about this community of "friends". So, I emailed my new friend some resource links, some blogs to look at, and a big hug. Tomorrow I'm sending some pilot caps.

Then I thought about this poem and wanted to share it too. Even when first read, the thought of not being in Italy was stomach turning for me, but is Holland truly that bad? I've found not. In fact, I've found Holland to be just as beautiful and rewarding, it just took me a little bit more time to realize what a great trip it truly is.

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.

18 Month Mommy

Aiden had his eighteen month well baby visit yesterday.

As I sat there waiting I couldn't help but reminisce

about his two month well visit.

The tears welled up in my eyes that day,

sixteen months ago,

as I watched a toddler play in the waiting room.

I pictured Aiden at this little boy's age

(who was about 12 to 18 mths)

and all I could picture was all this equipment.

I tried to shut my mind off, but it wouldn't.

I wondered if he'd be as outgoing as the little boy

toddling around, babbling to his mom as happy as can be.

I thought about the possibility of Aiden not babbling,

and my heart skipped a beat, as if I couldn't breathe,

I was scared ... very scared.

I will NEVER forget that day.

That day I hated that my baby was deaf. Hated it.

I left the office feeling very sick to my stomach, tears rolling down.

Aiden at 2 months

Fast forward to yesterday. and my experience,
as the mom in the waiting room with an 18 month old,
with "that equipment" we now can't imagine him without.

We walk in and Aiden immediately starts squiggling

and says, "owwwn" for me to let him down.

I sit down, and Aiden hovers by my legs

playing shy in front of another mom and her daughter.

My monkey then climbs up on the seat,

saying "maaaaam" as he lays his head

on my shoulder still playing shy,

then decides he needs to show off instead

and gives me a nice whack on the head

as he yells "ow!" laughing out loud.

Continues to show off as he does a nose dive over me

to get a magazine with Halloween pictures on the cover.

As I try to talk to him about the pumpkin and the ghost

and the spiders, he yells,"ah da" (all done),

rips it from my hand and throws it on the floor.

then proceeds to try and climb up the seat

and onto the window sill ...

that's when the nurse came to call us back

thank God.

The nurse brings us back to the room, and

when she's done, says, "bye-bye Aiden!"

So Aiden waves and then blows a kiss

with a big ol "mmmmua"!

And I was worried.

Aiden at 18 months

and just for the record, his stats:

• 27 pounds 4 oz vs. 12 pounds at 2 mths


• 33 inches vs. 23 inches at 2 mths
  
• 50 cm head circumference ... and I only put this here because I had to laugh at the fact that his head size is in the 95th percentile!! Oh my boys and there noggins!

Good with My Bad

I am completely worn out. I have been going nonstop since Aiden started school. It doesn't help that last week we had at least one commitment every day. School, audiology, therapy, ECI, school. Nonstop.every.day.of.the.week.

This trip to Aiden's school twice a week is hard. We leave before 7am every morning and are still late ... and class doesn't start until 8:30/8:45! The traffic is absolutely insane. The ride home is fine, it's getting there that's the problem and I'm starting to wonder if I really made the right decision to start him at such an early age.

I have to get Aiden up out of bed by 6:15am and throw him in the car for our two hour trek into D.C. I promise you, the other day it took me 25 minutes to travel from exit 28A to exit 28B. No joke. I truly don't mind the drive, but what I hate is the fact that during this time, Aiden's CIs become breakfast so he has no sound for the whole trip. Top that off with dropoff crying fits (ok, they don't last long, but it still breaks my heart) and I feel like a terrible mother.

I can't help but think:

- I started him too early.
- I'm losing good hearing/language opportunities during our travel time.
- He's crying when I drop him off, and
- Completely worn out when I pick him up.
- He's completely off schedule right now.
- How is he going to stay an extra hour once a week for private one on one therapy?
- Then he has AVT the one day in between his school days ... when does my baby get a break?
- He's reverted back to wanting the bottle even more, and I give in. It's the guilt.

These are all things that have been going through my mind nonstop and it makes me want to take my baby and stop it all.

Then I remember:

- This is such an amazing opportunity - he's getting three and half hours of therapy in a language enriched environment.

- He's playing, having fun, learning, learning, learning ...

- ... all at a prime learning to listen stage in his life.

- This is one of the best oral school's for deaf that works hand in hand with his CI center/team.

- He's in a classroom with 6 hearing peers and one other CI peer.

- He gets excited when he see pictures of his teachers and classmates.

- I am truly enjoying the downtime with Ben's mom and getting to talk with other CI moms who just get it.

The time to enrich his mind is now.

- He's starting to say the animal sound when he sees a specific animal.

- He plays with the caterpillar and makes it eat the fruits as he makes the munching noise each time.

- He's starting to imitate more

- He's becoming more observant and vocal

- His teachers are documenting his day and in the last three visits alone, have picked up on things I haven't, such as:

• Aiden says bah (ball)!
• When they ring the bell for circle time or clean up time, he not only hears it, but follows his classmates and participates in whatever they should be doing
• Sought out the teacher when his CI fell off! HELLO! He's NEVER done this at home ... until today, he SAID to me "on, on, on" and when I turned around, noticed his CI was off!
• Requested "uh, uh, uh" (up, up, up) when he wanted to wash his hands
• Is using the classroom climber unassisted ... remember, he's the only one in his class who is not walking, he's going to want to keep up sooner or later!

The hard work is now. The pay off is slow ... but it's definitely showing it's presence.

He is adjusting ... it's harder on me than it is on him ... emotionally and physically. Really.

When Aiden was born, I wasn't ready to hear he was deaf. I tried to ignore it. Not believe it, that there was something that would just "fix" it and he'd be fine.

But there wasn't a cure. So we grieved and forged forward.

Now Aiden's a full fledged toddler with cochlear implants. I'm not ready for this hectic schedule and feel guilty for how busy we are. But I can't ignore it. He's in a prime learning stage. I wish everyday that there was an easy fix for him. I wish everyday things were easier for him. I wish everyday he didn't have to work so hard to learn to listen and speak.

But he does. So we forge forward.

I wish I was as strong as he is.

He truly is one amazing little boy.

Shout Out to a Dear Friend

There's not a day that goes by that I don't think of my father. Not a day. They're mostly good days, when I smile about fond memories, but some of them are just down right yucky and all I want to do is sit in a corner and cry type of days. This morning I was doing the laundry, Aiden was down for a nap, and for some odd reason I just started thinking about how almost two years ago I had to make one of the hardest decisions of my lifetime ... to take my dad from his home and admit him into assisted living. It was the last thing I ever wanted to do, but he was to the point where I had no choice. We tried to have him live with us many times, we tried the full time nurse at his house, we tried and tried and tried to do what was needed to keep him living a normal of a life as possible. But the time had come ... and I hated every.single.minute of it and still do to this day.

That was October 10th, 2007. By January he had spent time in two different hospitals and three different nursing homes before we found the right one for him ... but by then it was too late. He had given up and he was dwindling away in front of my eyes. I felt so alone ... and SO guilty. How could I have let this happen to him?!? I spent one last night alone with my father, before my mother and brothers arrived from out of state. I was 8 months pregnant, and just held his hand all night long, praying and crying. praying and crying. He passed away less than 48 hours later.

That's all I could think about this morning .... and the guilt set in again. But within folding a few towels, my thoughts veered to why God gave me Aiden. It was right then that I realized that I was blessed with this deaf little boy to focus on the good and the positives and the rewards life has to offer. He gave me my sweet little boy to help me let go of that guilt, to realize life is too short to constantly wonder "what if", and most importantly, to help me let go of what my father endured and to focus on this miraculous journey my own child was about to endure. He prepared me for Aiden through my father, and with heartache comes great joy ... and Aiden is his grandpa through and through.

Right after, literally within seconds, of my crying episode and heart enlightening episode in the laundry room, I went to check my email and found this from a dear friend of mine with whom I taught back in Texas. It had JUST BEEN SENT.

"Hi Tammy,
I am so thrilled to hear that Aiden was accepted into the school of your choice with financial aid no less. Every time I check your blog and read of something so extraordinary, I can only thank God for giving you a strong character and the determination and tenacity to do everything you can for your little man. Bless your heart. I don't know why God allowed Aiden to be deaf, but I am so thankful He chose you to be his mom. You are a blessing girlfriend. I am so proud of you."

I was in tears. Sharon has always been there for me with a hug, with a positive message, with hope and belief. She is one of a few people who truly helped me stop questioning God, but to believe in Him. She always had a hug, a prayer, words of encouragement, or even agreeing with me that yes, sometimes life sucks. She has always followed Aiden's blog and has been one of my biggest supporters. She is always in the right place at the right time ... even if I'm in Maryland and she in Texas!

I emailed her back immediately explaining my episode and how her message, once again, was sent just at the right time. This is part of an email I received back:

"Tammy, I always feel so blessed when I listen to the prompting of the Holy Spirit to do something and today it was writing to you. You are a blessing to me and so many others, and I hope you never forget that. And you were certainly a blessing to your dad - no one doubts that or just how much you loved him. But with all of that, you could not change his destiny. I know the pain I had in losing my parents most especially my mom."

So here's a shout out to you my dear friend ... THANK YOU from the bottom of my heart. Your words mean so much to me and I couldn't have received a better message at a better time! I am truly blessed to have you in my life!

and cheers to my dad ... an amazing son, husband, father and grandfather. We miss you so much and will never ever forget you! You'd laugh out loud at the fact that Aiden is just as stubborn as you and has that smile and blue eyes of yours that wins everyone over each and every time!