Saturday, June 15, 2013

Bless his heart.

6 years ago when this whole journey started, I either was hiding in my bathroom crying or walking around completely full of anxiety wondering what the future would hold for my chubby baby boy. Would he be able to communicate? How would he communicate? Would he be able to go to his neighborhood school and be with his typical hearing peers?

My deaf little boy.

It took me a really long time to say that word. Deaf. I have a deaf son. He was a baby with hearing aids and then a toddler with a Cochlear Implant. Strangers would stare. Sometimes sweet old ladies at the grocery store would pat my shoulder and tell me how sweet he was and "Bless his little heart".

So now, 6 years later as I beg my little boy to save the rest of our chat for tomorrow morning because it really is past his bedtime and he had such a fun day playing with his friends, I am at peace. Sorta.

Christian finished Kindergarten yesterday. Kindergarten in our fabulous neighborhood school where his buddies from around the corner and our little town go. Kindergarten in a typical classroom with typical peers. Kindergarten in a school where he is the ONLY kiddo out of over 500 that has Cochlear Implants.

I spent this year at our mainstream school excitedly explaining to parents, teachers, administrators, and coaches "Yes, he's deaf BUT...." My bilateral Cochlear Implant boy is able to do things academically and socially that every other 6.5 year old boy can. He became a class leader, a class clown and quite the athlete this year. His hearing loss, while always on my mind, was also a bit further down the list. By December, I found myself reminding people that he was deaf, and don't forget to have him sit closer even if he thinks he doesn't need to (he really doesn't need to, but it makes me feel better as his Momma). 

Along with his great success came different worries. We are still really working hard on rehabilitating his year old left Cochlear Implant. Teaching a deaf kid (even one like Christian) to read and tell the difference between a /th/ sound and /f/ sound is a challenge and frustrating sometimes for the both of us. And then there are the typical Kindergarten things like high emotions and focus that come into play. It's been a fun year with some hills to climb.

On the last day of school, Christian is writing simple sentences. He's reading right where he should. He is excited and can't wait for 1st grade.

My deaf little boy. Exactly where he should be.

Monday, May 27, 2013

5 years.

I no longer have little babies.  Christian is finishing up Kindergarten in 3 weeks and Lily is eagerly awaiting the start of Pre-K this Fall. As my dear friend Kim puts it, we're almost out of the weeds. Family trips are easier as they are older. The dynamic of our family life has changed. While it's become much more busy with lacrosse games, ballet recitals, and the constant hustle and bustle of life, the insanity of having babies and toddlers running the show has given way for a more controlled chaos. My college roommate just had her first baby and was asking me when the kids first sat up, how much food they ate and a bunch of other questions that quite honestly I couldn't remember. 

Life. It just moves. Really really fast. 

At least that part of our life.

And then there is our life as a family impacted by hearing loss. 5 years ago today Christian received his first Cochlear Implant. Over the past 5 years, we've had months that have flown by with progress and weeks that have stalled with set-backs. I may not be able to remember the month that my kids started sitting up but I can tell you the exact moment when Christian acquired the /sh/ sound. 

5 years later, my sweet and silly little boy is thriving in a mainstream classroom with typically hearing peers. He just finished up his first lacrosse season (with a championship win), loves Tae Kwon Do, is obsessed with sports, is reading books and is a great friend. He's responsible, loving, sensitive and hilarious. The icing on the cake is his second CI, which he received a year ago last week. His localization of sound, articulation and his academics have really benefited from that second ear. He's just doing great.

It's not the end of the road for us though. Weekly therapy appointments for his newly implanted ear, constant monitoring of his mainstream classroom experience still dominate our family life. But it's gotten easier. 5 years later, I'm not as scared. Just as he's gained confidence, I have too. My smart and sweet little boy continues to work hard, roll with the punches, and just defy the odds. 

Christian, I'm so proud of you. Every single day your amaze us. 

Friday, April 5, 2013

THIS is how mainstreaming should work

I wanted to share a snippet of a response that I just wrote to our fantastic Teacher of the Deaf who sees Christian once a week. I think it gives a window into what we go through everyday here:

Thank you for this fantastic update. Chuck and I are SO appreciative of your detailed reports. I feel so disconnected sometimes (even though I do my best to get into the classroom frequently) and feel very lucky to have your eyes and ears there for us. Since Christian is our first, I often find myself wondering "Is this normal or is it a deaf thing" and have no idea half the time what to expect. The other half of the time, I'm winging it :) My Christian is an amazing little guy, and he no doubt has made incredible gains with his CIs, but I still worry for him and how he's progressing with his literacy. I have a feeling the moment it all clicks, I'll be able to breathe better.

He loves his time with you---yay! It sounds like he is doing great with his listening for you. I'm curious, during his listening of words when he got 6/9 was that just left only? Or both?

I would love your input on any communication I give to the school regarding his placement for next year. In addition to the sheet that will come home, I plan on writing to Mrs. L.  outlining Christian's strengths, and also noting some specific challenges. The placement with Mrs. R. was SPOT on, so I have a positive feeling about next year but just want to be sure. I know that a controlled yet innovative classroom really benefits him. He needs an organized teacher who runs a tight ship but is flexible and is really willing to work with him.  And Please please please tell me that you will be our provider again next year?
Again, thank you. It's hard to believe that we only have 2 more months of school. And it's hard to believe that in just over a week we'll be celebrating him going bilateral. It's still mind blowing to me.

Christian's in-class teacher and his service provider collaborate. The principal is involved and actually KNOWS my kid. He is thriving in our neighborhood school in a typical Kindergarten classroom. This is how mainstreaming a deaf kid should work. I really hope that we can keep this momentum going.

Aquarium fun over spring break. I love how he still looks little in this picture.

Tuesday, March 12, 2013


Christian's been bilateral for almost a year. The series of mapping appointments we've had over the past several months have shown that both his right and his left ears are in the 15-20 db range. His right ear speech perception scores are unbelievably amazing in the high 90th percentile. However, even though the audiogram shows his left ear is comparable to the right ear, his speech perception in that ear is in the low 40th percentile. For all the non-CI Mommas and friends reading that, it basically means audiologically he is on track but when we actually evaluate what he IS hearing with just that left ear, we have A LOT of work to do.

I was thinking about all this during my spin class today. I was trying to clear my mind, focus on my workout but I just couldn't stop thinking about my Christian.  My sweet kid is a hard worker, and out of my two children, he is my pleaser. There's no questioning with Christian. He just DOES. The rehabilitation of his left ear has had it's frustrating moments, and he just carries on. He's patient. He's constant. He keeps hanging on. And quite honestly, he has no idea what's going on when it comes to the left ear. He just knows that he likes having 2 CIs better than 1, BUT he likes the "old ear better than the new ear".

I started having one of those bi-monthly pity parties that somehow still creep up half-way through the class and got a bit teary eyed. I found myself asking God why? I was asking God in the middle of a spin class to give me the courage and grace to make the right choices because I was doubting them. I found myself getting overwhelmed and I'm pretty sure today was the first time I ever said a Hail Mary with cycling shoes on.

I've had a hard couple of weeks, and this is just the icing on the cake and I'm trying really hard to keep this in perspective. I knew that this wasn't going to be easy, and to many my journey IS a piece of cake. We're just going to buckle down, keep isolating that left ear, work a bit harder, and try not to breakdown during my BodyPump class tomorrow.

Thursday, February 28, 2013

Report Card.

Two Words: HE ROCKS.

Along with all "Ps" (we have a new grading system in our county) that denotes that he "Meets the grade-level standard by demonstrating proficiency of the content or processes for the Measurement Topic), Christian completely rocked out his reading.

That little dot notes where he is, and the black shaded area is where he is expected to be. So, the second marking period of Kindergarten, he is reading at the expected 1st Grade level.

This is my little boy, who happens to have bilateral cochlear implants, who is in a class with 22 other kids in a TYPICAL public school classroom with NO visual support, with NO FM system. He is the only kid with hearing loss in his grade and the only child with Cochlear Implants in a school with close to 500 kids.

This is my little boy, who also was in school since he was 18 months old, who was enrolled in an amazing program for 5 years that put him with typically hearing peers so he could LEARN language from them. This is my little boy who since age 2 has been advocating for himself, who gets tired faster than any other kid in his class because according to him "Listening is hard work, Mom".

This IS my little boy. He is TOTALLY rocking it.

Friday, February 8, 2013

6 years old.

This post is 5 days overdue thanks to our internet being down in our house. Thanks Verizon. 

It's hard to believe that was me 6 years ago. I found this picture going through my digital files and had a wave of both sadness and joy come over me at the same time. Oh those sweet moments with your first newborn baby. The cuddles outweigh the sleepless nights (look how tired I am in that picture). The excitement clouds the complete terror of having a new baby and being a new Mom. I so loved those first few weeks with my sweet new boy. It was cold and we hibernated. I nursed him covered with a fleece blanket as friends stopped by for tea and my parents did our wash. I was learning to be a Mom and it was so new. The "me" in that picture was still innocent. Hearing loss, deafness, IEPs, surgeries, Cochlear Implants, private schools, speech perception testing and inclusion meant nothing to me. That "me" in the picture had no idea what I was in for. And it would take another 9 months for me to get there.

I see that girl with her sleep-deprived eyes yet peaceful smile and I am thankful for the time that I had when I was clueless. I've spent YEARS being angry at myself for not knowing it all in the beginning, questioning how much was lost during those months when my little boy had no sound. Wasn't it MY job as HIS Mother to know? How could I have let that happen to my boy? What did I do wrong? Yet now when I look at this picture and I see that girl who is just so at peace with this perfect little human I'm over it. I did the best that I could do with what I had and enjoyed my new baby like any other new Mom. Even if it was just for a couple of months, I was innocent.

6 years old. Happy Birthday to my little man. You find time to cuddle me in between your sports practices and Lego building sessions. You are a good friend and a fantastic student. You are silly. You are sweet. You use words like "photosynthesis" and track hockey game scores and love your sister like no other. I adore you. I love you. I'm proud to be your Mommy.

Monday, January 28, 2013

Happy Birthday Lily Grace

*My photo-uploader is broken...I have so many more pics I want to post of this sweet girl, but can't!*

My baby is 4 years old today.

What a blessing she is to our family. I always believed that she came at just the right moment, even though at the time I thought we'd be in over our head. I found out we were pregnant with her on the day of Christian's first Cochlear Implant activation. He was just under 16 months old, and we were in the thick of it. I was constantly overwhelmed, I had no idea what I was doing with a toddler, let alone a deaf one, and I was exhausted. All the time. And we were going to have another one?! What the heck were we thinking. I was convinced I'd drown.

And the total opposite happened when she came along.

Liliana Grace, sweet Lily Grace lifted us all up with her sweet face, and million dollar smile. Over the past 4 years she's been our saving grace. Her humor, her spunk, her little bit of sugar and a whole heck-of-alot of spice are my treasures.

She is my reality check and my comic relief. On days when I'm up to my ears in IEP edits, lacrosse camps, and CI coils, she pulls me to her room for an impromptu tea party with her bitty baby and girls. She is full of magic. She is her brother's best friend. At almost exactly 2 years apart, she loves him like no other. He takes her sass and she his rules. They are just perfect together.

Happy 4th Birthday Sweet Baby Girl. You are simply amazing.

Monday, January 21, 2013

Learning to Listen

Just after Christian's first Cochlear Implant activation (almost 5 years my life was consumed by teaching him to "LEARN TO LISTEN". I lived my life as his Mother creating language opportunities knowing that Christian's deafness had NOTHING to do with the softness or loudness of a sound but rather to give him the tools to apply MEANING to what he was hearing.

Do you hear that?

I heard that sound!

That's an owl. Who, Who....yes, Who! You're right!

Swoosh, goes the basketball in the net.

Chop, chop, Mommy's chopping.

Then, almost magically....sounds had meaning. I mean, I know it wasn't magic. Christian's brain learned to take the SWOOSH of a basketball through the net and interpret that as a meaningful sound. He figured out that the squeaks in his ear were shoes on a hardwood floor in his school. The rumble he heard faintly through the windows were OBVIOUSLY airplanes flying in the distance. He stopped asking me "WHAT'S THAT?". As he grew, it just clicked. Honestly, at almost 5 years post his first activation and one year after his second implant the days of me teaching him a sound and what the meaning was are almost gone. And then we took him to the Verizon Center to see his beloved Capitals practice during Fan Appreciation Night.

My little sports nut, who watches SportsCenter with the fervor and appreciation of a college kid, was thrilled to see his heroes shoot the puck around.  I took him down to the very front, and watched my sweet boy who is growing so fast, bang on the glass and chant "LET'S GO CAPS". With my hands on his shoulders, I followed the puck with him. Even with thousands of people, the rink did eventually have a calm quiet about it. With the sounds of pucks hitting the boards echoing throughout the building, my almost 6 year old turned to me and said

"Mom, what's that sound?"

"Oh sweetie, that's just the sound of the pucks hitting the---"

"No, not that the "psshhh, pshhh"

I had one of those world-stopping moments right then and there when I realized that Christian was hearing the sound of the blades slicing through the ice as the players skated around. I realized that he was hearing the sound of MY past. I grew up in an ice rink as a competitive figure skater and the sound of my blades cutting through cold and hard 6am morning ice is still forever engrained in my heart. It is a sound of comfort and of peace.

With tears in my ice I told him that was the sound of the blades cutting through the ice. And that if he listens, he can even hear when the players use their edges to stop.

"Oh, ok...that's cool."

Yes, my amazing little is SO VERY COOL.

And just like that, I realized that my job isn't quite done. My little boy, who can tell the difference between a french horn and a trumpet by sound, is STILL learning to interpret the meaning of sounds.

Check out his handmade rally sign!
Right-up on the glass!
Alex Ovechkin!

What a happy boy!

Monday, December 31, 2012

2012 from a Blog Slacker's View

I've been a blog slacker. Life is crazed, and quite honestly 2012 was NOT my year in regards to time management. Last January, my New Year's Resolution was to take a step back and peel back my time commitments and focus on what was important: My family, my faith, and my friends.

In April Christian went bilateral, and I had to throw that resolution out the window. Intensive rehabilitation was back on our family calendar. The transition to a new school, meant more meetings and more stress. I thought that I would have MORE time starting in September with Christian being closer to home for school and Lily in school one more day a week. Instead my days went by faster, and my nights became longer as I attempted to squeeze everything in.  I tried so hard to juggle it all, and quite honestly, I really think I did a horrible job.

Yet when I look back at this year, and I see all that it brought to our family and to me as a wife, mother, and friend, maybe my resolution DID work. I took the few minutes I had in between work, carpool and volunteer commitments to be silly with my daughter. I made sure that for every minute I spent working with Christian on his new CI that we spent 2 being playing Legos together. I may not have had the most creative and Pinterest inspired dinners on the table when my sweet husband would come home, but I made sure to give him some much deserved time and attention when he came home from work. I committed time to my faith and ministered to the women in my parish community and felt myself getting closer to the Lord every week. And I really feel that I gave my beautiful friends who truly are such gifts, the love and attention that they so truly deserve. While I didn't gain the extra time I thought I was going to get, I became more conscious of the time that I DID have. I treasured it. I cherished it.

I guess I'm no longer a rookie, and really should just expect that every year as the kids get older, things get trickier, time disappears, and things will just get HARDER. Sometimes life throws you a curve ball (like going bilateral) and you have to adjust. If 2012 taught me anything, it's to be ready for the unknown. Luckily, I have my faith, family and friends to rely on.

2012 Highlights

Bilateral Boy
Cherishing this time...

2012 was the year of ballet for Beanie

And Tae Kwon Do for Buster

We visited Aunt Ali and Uncle Bu many weekends.

And spent them with Uncle Dave and Aunt Alison too!

Josie and Lily were our comic relief on those hot DC summer days.

And we cooled off Up North with Nana and Papa.


Aunt Sarah and Uncle Nick time is the best!

Cocktailing it in NC.

Spending time with our cousins!

Visiting with Uncle Art and Aunt Mary!

Wishing we lived closer...

Lazy and fun days at the pool...ok, who am I kidding. Tiring and sometimes annoying days at our pool. But the kids had fun together.

A lucky little boy to have a friend like Justy!

Silly friends!

Again, Josie provided Comic Relief.

And Willis and Jack did too!

Laughing with Papa!

First day of school!

Lacrosse fun!

Halloween--first year they didn't have "joint" costumes. My boxer and Marina from The Fresh Beat Band!

Labor Day fun in our little town!

I still need my Dad!

How cute are they?!

Best Friends!

So lucky to have these girls.

This is what we do on Tuesdays.

Daddy's birthday

And a shot of what I look like 10 hours a day. In the car.

Football fun!

Love my Belle!

My loves.

Crazy family times!

It's fun to have a friend almost as crazy as you are. And who loves wine more than you.

They're getting old.

Daddy cuddles.

So lucky to be able to spend time at home and watch my lovey and her friends grow!

Nutcracker with my baby angel. Not going to lie, I cried.

Spending the morning with our besties was SO fun!



Makes me so happy!

My Shepard!

When some of your best friends happen to live on your're a lucky girl!