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listen with your heart. speak with love.
Our Family's Cochlear Implant Journey
Friday, June 1, 2012
Knee Deep
Gonna put the world away for a minute
Pretend I don't live in it
Sunshine gonna wash my blues away
-Zac Brown Band
I think it's fair to say that we are knee deep in our new normal. We
went from not really worrying about much, to sorta worrying, to hitting
the ground running and keeping up with being bilateral.
It's been crazy. It's been exciting. It's been overwhelming. Everyday
things now have an added layer (um, more equipment to lose on the
occer field for one) of just stress. My already tired boy works hard
at home with me on top of all the added therapy at school. He's
exhausted.
I'm getting crabby, and my tolerance for ignorance is next to none. I
pulled the "deaf card" at our pool the other day when a Mom I don't
know was scolding Christian for bouncing a basketball in the baby pool
area. My 5 year old deaf kid can't swim that well, was taking a break
in the baby pool with his buddy who is 5 and can swim and was in there
anyway. All I heard was this chick say "Do you hear me, don't bounce
that in here" and I headed right over, started signing and told her
matter-of-factly "This is Christian, he's deaf, he can't hear". Sure,
we put an old processor in our aloksak and waterproofed him...BUT
STILL! The next day, we were at our martial arts studio. We've been
there for months, know most of the parents and the staff is amazing. A
parent that I've never seen before came rushing by and knocked
Christian's processor of his head. It was definitely an accident, and
Christian just picked it up and put it back on. I was standing right
there and just said "Oops, don't worry about it, it happens". She made
a comment about his "thing on his head" and I just felt the tears well
up.
With all the downs, we certainly have had our ups too. I pulled out our
dog-eared language discovery cards and worked on isolating them in a
field of 6 and Christian did a great job identifying what I was saying!
He's doing great with his Lings. It's one step at a time, even though I
do feel like I am trudging through really thick mud at the moment we
are making progress.
We needed a break from our "new normal" and headed to see the Zac Brown
Band. It was great to let loose and listen to some fantastic music with
great friends
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Taking a much needed break from the "new normal" with great friends at
Zac Brown Band!
at 6/01/2012 1 comment: Links to this post
Wednesday, May 30, 2012
Activation Part 2
Activation Part 2 went fantastic yesterday. Christian was such a ham,
imitating all the sounds he heard during the programming. He had us
laughing when he was trying to find the sound for the low frequency
beeps and it sounded like he was clearing a throat. He had me blinking
away tears when he IMITATED ALL FOUR LING SOUNDS with no visual cues.
SERIOUSLY. He did it.
He's turned up, programmed a bit more aggressively, and cracking
everyone up. We are ready to work.
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at 5/30/2012 No comments: Links to this post
Monday, May 28, 2012
flip flops.
8am. Both of us still in PJs, one hand is holding my coffee and the
other my sweet boy's hand. I slip on my Jack Rogers, Christian his
hark flip-flops and we head outside.
"Ready sweetie? Flip your old ear off and let's try listening with our
new one"
"Ready MOM!"
Our little street which usually is bursting with the sounds of kids
laughing, Nerf Guns popping, and shouts from scoring on lacrosse goals
is peacefully quiet. All I can hear are birds chirping. Can he?
We walk hand and hand and I'm chatting away about our time at the pool,
the color of the American flags that are hung proudly on the homes
around us, about Pokemon, Beyblade, baseball....can he hear me?
We're around the block, heading back towards our house. He's smiling.
And then stops. And starts clicking his tounge and then stops. And
tarts smacking his lips.
"Dude, what are you doing? Come on honey, let's keep going"
He keeps clicking and smacking. He flips on his old CI, continues to
walk, and smiles.
"Mom, I hear this sound (CLICK/SMACK/CLICK/SMACK). IT'S MY FLIP-FLOPS!
at 5/28/2012 3 comments: Links to this post
Tuesday, May 22, 2012
I'm having a hard couple of days.
Just when you think you have a handle on the whole grief-component of
raising a deaf child, it sneaks right back up on you. Christian is
trying SO hard, but the progress is inconsistent and slow. I feel so
obnoxious writing this, as I KNOW that progress WILL be inconsistent
and slow after the initial activation. I've counseled other parents
going through this and have told them to be patient. I've reminded them
that each child is different. I've encouraged them to stick to the
program, to follow their audi and AVT's protocol and IT WILL COME. Why
am I having such a hard time with this?
I'm thankful that my friends are here to remind me to stay positive. In
the words of wise Aunt Ali "Stay strong. He can't see you upset".  I'm
not quite sure what I would do without our amazing support group
here...it helps to have friends who just GET IT and who know when we're
getting close to the breaking point (and happen to make a delicious
dinner on the first day of pull-out therapy for our family so we can
concentrate on our tired and worn out little boy). I'm thankful that my
in-laws have stepped in and are there to really just do whatever needs
to get done, especially making sure that our Lily Grace gets all the
attention she so desperately needs. And Chuck...oh my sweet husband. I
heard him last night working on isolating the new CI, helping our boy
listen to sounds for the first time with that ear. He is so strong. He
is so loving. With all this love and support, it's ridiculous that I'm
freaking out and crying all the time, right?
This is the hard part. This is the part that I remember from the first
time second guessing myself. This the part that tested my faith and my
confidence. I know just like last time it will get better with time. I
know just like last time it's all about the patience and the prayers.
And knowing when to just take a break and lift up my anxiety to the
Lord while raising a glass of Sauvignon Blanc with my girlfriends.
Oh, and if you haven't already seen this video, please watch it. This
family hit the nail right on the head.
IFRAME: http://www.youtube.com/embed/SKpwjOrrlX4
at 5/22/2012 1 comment: Links to this post
Monday, May 21, 2012
Kindergarten Orientation
When we started at Christian's current school when he was 18 months old
we set a goal: Christian would attend our neighborhood elementary
chool by Kindergarten. I remember thinking how far off that felt. And
now almost 5 years later, the bittersweet reality is really sinking in.
Our time at our beloved school that I feel really rescued our family
and was THE most important investment we most likely will ever make for
Christian is coming to an end. However, we are one step closer to our
goal. Christian is MORE THAN READY.
He had a blast at orientation. He is super-comfortable at the school as
he has been going there to meet our county service provider 2 times a
month for 2 years now. He used to call it the "Big Kid" school, but now
it's just "My school I'll go to next year". Christian walked hand in
hand with his two best buds into the school, they got their pictures
taken, and went into a room to show off all their Pre-K skills. I
filled out tons of paperwork (although, not as much as my other friends
who didn't already have their kids pre-enrolled thanks to an existing
IEP), chatted with the principle (again, not as much as my other
friends who aren't going to have private meetings and an IEP with her
come June), and filled out our family's directory information. Oh, and
our service provider came to introduce herself to the teachers too. How
awesome is that?
Christian has been attending full-day school for 3 years now and his
current class schedule is VERY similar to his schedule come
Kindergarten at the new school, so I'm not really worried about the
length of the day. We get to WALK to school, so he actually gets to
leep in almost an entire hour if he wants to compared to his 7am
wake-up call every morning to get to our current school on-time. He
will have MANY friends not only in the school but also entering in the
chool for the first year. I know that no matter which class he is
placed in that he will find a friend. The typical Kindergarten
"worries" aren't really an issue here in our house. I'm just freaking
out about sending this school their VERY FIRST Cochlear Implant kid.
Oh, and the really loud classrooms. I'm nervous about that.
I'm just thankful that Christian is the type of kid that can really
roll with the punches and bounce when he needs to. That calms me
down...just a bit.
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at 5/21/2012 2 comments: Links to this post
Friday, May 18, 2012
baby steps.
Activation week in a nutshell:
"Mom, I can't understand you. It sounds like "BZZP" "BEEP".
We're working hard to get Christian to articulate what he's hearing.
Sometimes he says he hears "nothing", but then will say "I just don't
understand those sounds".
We had a big first couple of days turned on with his new ear. School,
Tai Kwon Do, Soccer...and OH, did I mention Kindergarten ORIENTATION
(more on that to follow). We lost the new CI once already on the soccer
field (why doesn't it stay on as well as the first one does with wig
tape?), but thanks to our coach found it in a flash. Christian didn't
even notice it was gone....ugh.
Master RJ at our martial arts school showcased Christian's bravery and
perseverance---can I tell you how much I LOVE this program. Honestly,
every kid should be in martial arts. Christian's confidence, focus, and
listening have improved SO MUCH. Not to mention it's a great place to
practice listening in REALLY loud situations.
So...this is where we are at:
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Christian has isolated the /ah/ sound several times at home and at
chool. And yes, we are back to tracking the Ling sounds on the chart
just like we did when he was 16 months old. We're taking baby steps
into this whole process.
Monday we're pulling out the big guns. I have to go to Target and stock
up on Skittles for bribes.
at 5/18/2012 1 comment: Links to this post
Tuesday, May 15, 2012
activation.
Just as a disclaimer, I've shared about 2 bottles of wine with one of
my besties--take this post for what it's worth, but know that it's from
the heart.
Today we went bilateral.
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Going for number 2!
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Love this boy.
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One of our fabulous Hopkins audis explaining to Christian what's going
to happen....things really were easier when he was a baby!
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Internally everything is working FABULOUS!
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Christian listening for his "beeps" while playing with his new
SpongeBob DS game.  "Heard that one, Mom".
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Two ears are better than one.
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Cool soccer ball cover. Daddy says he's going to order a Redskins cover
for him!
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Our second Cochlear Koala. Christian named this one "CI-er, but Mom his
nickname is Sharker". So thankful to have such a great team at THE BEST
implant center!
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Ready to go home and see his buds.
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Dinner and cupcakes with our best friends.
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Newest Cupcake Kick: Whole Foods makes pretty darn good ones!
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Christian and his best bud Justy.
Going into Baltimore today I had no expectations. Much like last time
around, I just wanted my boy to hear.
I can't describe what I'm feeling right now other than it's a mixture
of a little bit of excitement, a heck of a lot of anxiety and an
immense amount of hope. Christian's activation today wasn't one of
those viral YouTube videos that show the miracle of the Cochlear
Implant. It wasn't one of those activations that bring tears to your
eyes or demonstrate what we know is truly the magic of this amazing
device. No, today's activation was different. Or maybe I should say
it's "real".
The reality is that Christian has been hearing out of one ear for
almost 4 years via his first CI incredibly. He's now 5.5 years old, is
amazingly articulate, and speaks his mind. Today he described to us in
great detail just how HARD it was to hear out of his new ear. Today he
howed us with his squinty eyes and his determined face how HARD he was
working to listen. The reality is that when it comes to his new
ear---his left side, we are literally starting from square one. He told
us he heard the "beeps", but when it came time to comprehend our
voices, he really really struggled.
We know this is normal.
We should've expected it.
For the next week, Christian will wear both of his CIs during all of
his awake hours. His new ear was programmed very conservatively. Come
this time next week, the real work begins. Targeted listening time will
be implemented at school, pull out speech therapy begins, and my life
with my amazing boy will be devoted into rehabing his new ear. We will
work on it day by day, starting with the basics and moving forward as
we can.
We're going to rewind back to our days in 2008 when I would push him in
a stroller and narrate the sounds of our neighborhood. This time, we'll
ride bikes and take breaks and check out what's going on in our town.
We're going to seek out language and listening opportunities EVERYWHERE
we go. We're going to narrate our life. Once again, we are in the thick
of it.
As much as I wish I could snap my fingers and voila--my baby would be
able to hear just as well out of his new ear as his old, it doesn't
work this way. Right now, his brain is working hard trying to interpret
the sounds coming out of the implant. Right now, he can't understand
our voices, music or environmental sounds.  Right now, he's in a really
difficult spot.  I am so incredibly thankful that we go to the best
implant center in the nation. I am beyond thankful that Christian is a
part of one of our country's best oral-deaf education schools. We just
need to follow his lead, give him the tools and wait and see. I know he
can do it. He's never ceased to amaze me.
Oh, and our Lily....when I picked her up from her bff Julia's house
(her Momma is one of mine too...funny how that works out!), she
exclaimed "Brother, I'm proud of you". She is, and has always been, our
hining light of joy and laughter and always gives us the bright side
exactly when we need it. We literally just found out we were expecting
her when Christian was activated with his first CI, and now  3.5 years
later, she's proving to once again be such a gift to our family.
Perseverance. Patience. Prayers. It's what we need right now.
at 5/15/2012 2 comments: Links to this post
Monday, May 14, 2012
Big Time.
Could this week be any more HUGE for Christian?
1st Cochlear Implant activation is tomorrow at Hopkins, Kindergarten
Orientation on Thursday and Board Breaking on Friday night (followed by
dinner with our parish priest).
He's excited for his activation, giddy for orientation, and simply
cannot wait to show off his orange belt skills on Friday. He promised
to help me "host" our dinner party with Fr. Justin too.
I, however, will be spending most of this week either at the gym trying
to calm my anxiety or at my best friend's house drinking wine on her
porch.
at 5/14/2012 No comments: Links to this post
Sunday, May 13, 2012
The Days Are Long But The Years Are Short
Today was my last Mother's Day with 2 Preschoolers. Here's the rundown.
I was totally spoiled. The only thing that could've made it better was
being with my own Momma today.
I slept in. Until 8. The kids made me gorgeous cards, presented me with
a new charm for my bracelet with "Bean" and "Buster" (their nicknames)
engraved on each side. Can I tell you how much I love this tradition?!
Every year since becoming a Mommy, I received a charm. I love things
in little blue boxes, and the fact that Chuck has been building me this
gorgeous bracelet every year...it totally melts my heart.
My hubby made me coffee, a great bowl of berries, and I relaxed.
Somehow the house became quiet, and I read on my iPad. With my feet up.
And a cup of coffee. I swear it was total bliss. Chuck and the kids
planned a trip to the country to pick strawberries. We laughed, we had
weet family time. It was a total blessing. I watched some crazy movie
on Lifetime while the three of them went to HomeDepot. I drank a hot
cup of tea in a quiet house. I'm now sitting outside after a grilled
teak dinner with my beautiful family enjoying syrah. Seriously, I have
to brag. I'm so blessed. I love these kids. I love this family. And as
crazy and challenging as this life is, I wouldn't change a thing.
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My loot. Can't decide if the handwritten card with "Luv Christian"  or
the Tiffany's charm  is my favorite....
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This girl...we pulled out old clothes for strawberry picking and she
rocked this terrifically tacky shirt at one of those terrifically tacky
restaurants that I hate. Totally violated my rule of never eating at a
place that gives crayons with your menu, but hey...we were in the
country.
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Strawberry patch love!
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Such a helper.
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One good thing about terrifically tacky restaurants: They serve
Margaritas with BEER in them.
at 5/13/2012 No comments: Links to this post
Wednesday, May 2, 2012
Savor.
One day, sidewalk chalk will be replaced with iTouches, XBoxes and who
knows what else.
Until then, I'll take the multi-colored handprints all over my house
and the tie-dyed tub that always follows.
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at 5/02/2012 1 comment: Links to this post
Tuesday, May 1, 2012
lily bean
How I LOVE this girl.
She has this infectious laugh that gives me the giggles. She literally
dances through life, making every moment a performance. She is sweet.
She is compassionate. She is gorgeous. She is a loving little sister
and a caring friend.
She's been such a help this past week. Even though she doesn't really
"get" what just happened, she has been concerned about "my brudder's
ear boo-boo". She'll run right up to him and place her head on his
tummy and say "Oh, Christian. You ok? I love you brudder".
She completely melts my heart.
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at 5/01/2012 1 comment: Links to this post
Tuesday, April 24, 2012
Recovery
I am constantly in awe of how quick these kids can bounce back.
This past weekend Christian built many legos, watched movie after
movie, and then got really bored. Just 2 days after surgery he was
asking for a playdate with his buddy Jack, wondering when his friend
Lacy was going to come over, and telling me he missed his friends. Um,
buddy...you just had MAJOR surgery.
We decided to send him to school today. I sent him in with the sticker
book that our good family friends gave him for his recovery to do
during PE. If there is any school that is equipped to handle this, it's
his school. I am confident that the teachers and administration will
make sure Christian doesn't over do it (or the other kids). I just
called to check in and they told that he is doing fantastic. We're
going back up to Hopkins on Thursday to see his surgeon.
Our friends and family have been amazing. Christian's grandparents took
Lily on Friday and Saturday to give Christian some quiet time here, as
we all know that Lily has lots to do and say. Meals have been brought
and carpools have been set up so we can focus on this new exciting
journey for Christian. Folks have sent care packages for both Christian
and Lily and even Chuck and I.  I feel so lucky that we have this
awesome support system.
The trickiest thing about this recovery is that his spring sports
chedule is going to be put on hold. Swim lessons are definitely a
no-go. Tai Kwon Do is a maybe-I chatted with Master RJ at our martial
arts center and they are CONFIDENT they can adjust the curriculum for
Christian's needs right now. Soccer...well, I think we'll skip this
week. And lacrosse....I'm going to let Chuck make the call on that one
but something is telling me we'll take at least another week off.  Good
thing we have lots more legos, arts and crafts and fun new toys and
books given by loving friends and family to keep him occupied after
chool.
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Love Star Wars! Thank you Feldman Fam!
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Early evening day of surgery. He wanted to go outside!
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The bandage and his National's jersey stayed on until Sunday.
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Bubble Gun from his friends Grace, Olivia and Sadie...he loves it!
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Loving the cookies from Aunt Alison and Uncle Dave.
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Christian's best school bud Lacy delivered the world's biggest get well
card from all his classmates!
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So cute!
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One of my CI Mommas sent this to Christian. Thank you Heidi and AJ!
xoxo
at 4/24/2012 No comments: Links to this post
Saturday, April 21, 2012
Surgery Day
Christian is amazing. He's brave. He's strong. He totally rocked this
urgery. The hardest part of the day was the waiting. He was in for
just over 3 hours. I brought my iPad and watched the latest episode of
Revenge. I curled up in a ball and tried to nap to make up for the zero
leep I had the night before. Bottom line was that he was a complete
rockstar. The only part he complained about was the smelly medicine in
the mask that he told me "It smelled like pickles. I don't like
pickles".  The surgery was a complete success with no problems or
complications.
We got home by dinner time. Lily was with her Grandparents and was a
gentle and sweet sissy to Christian. Our concerned, supportive and
wonderful parents from Christian's class had meals for the weekend
delivered to us and Christian ate 2 popsicles and a little bit of
chicken. He slept well last night, waking up a couple of times only
because his bandages were bothering him. Today he's watching movies,
playing his DS and playing with some awesome new toys and projects that
our friends and family have been dropping off.
Yesterday's surgery changed our family's life forever. He's officially
bilateral. We are anxiously counting down the days to activation!
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We're on our way!
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Christian checking out his new implant!
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Daddy ready to head back into surgery with the brave boy!
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Honestly, he was so excited!
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Cute little toosh shot--couldn't resist.
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He woke up so slowly and peacefully.
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Couple of hours later, he was back to playing Mario Brothers!
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TONS of food for our family care of our awesome Cardinal Class!
at 4/21/2012 2 comments: Links to this post
Thursday, April 19, 2012
It's weird how even though we've done this before, I'm still full of
the same anxiety and worry as the last time. On top of it though, is
this odd sense of an almost peace. I don't think there's many mothers
who can say they feel at peace the night before a major surgery on one
of their children but I really do. I really feel ok.
This decision was a long time coming. It was not taken lightly.
What does bilateral mean? Well, I'll tell you what I think it will mean
for me as his Mom. I'll never doubt the efficacy of his aided ear. I'll
never again worry about that crazy scenario of him taking his oral
boards for medical school and his 1 CI craps out, and then what...now,
he'll have BOTH his ears to rely on. Now, he'll have a back-up. I also
have scenarios of him on his first date, at sleep-away camp, and at a
college party and his CI craps out and then whats....now hopefully he
will always have a back-up.
Christian has had a hearing aid in his left ear since he was 9 months
old. He was a PHENOMENAL user and did everything he could with what
ound was coming into that ear and worked with it. We know his hearing
aid was instrumental in his love of music. We're not sure what's going
to happen come after his surgery and after his activation.
So what does bilateral mean for Christian? To be totally honest, I'm
really not that sure. I know his directionality of sound will improve
and he'll have increased access in large scale listening environments.
In basic terms, it will really help him in a classroom with 28 other
kids talking at the same time with echoing tile floors (ahem...our
public school which is awesome but totally loud that we're going to
this Fall).  It will really help him on the lacrosse field to hear his
coach. It will REALLY help him in Tai Kwon Do class. But that's just
the basics. We'll have to wait to see what he can tell us about having
another CI ear. I'm excited to be on this journey with him and to hear
what he has to say about it.
at 4/19/2012 1 comment: Links to this post
A Letter To Christian Version 2.0
I wrote a letter 4 years ago to Christian  the night before we took him
to Hopkins for his first Cochlear Implant.  Tomorrow morning we're
going bilateral. Tomorrow morning life is going to change.
Dear Christian,
My Ninjago, Monster Truck, Ninendo DS lovin' boy, I just adore you. You
are smart. You are inquisitive. You are silly. You are sweet. You are
amazing. And you are just perfect. My little sports nut, you know more
about the Washington Capitals and the Redskins than most big kids. You
are our very own Karate Kid too! My loving big brother, you are the
best friend Lily could ever have. Christian, I adore you. Daddy adores
you. Lily REALLY adores you.
Tomorrow you're getting another CI, but you already know that. We've
done lots to prepare and you've asked lots of questions. Your friends,
family and your whole school are so excited for you. You are excited
too. You are brave....really brave. You want me to take pictures of you
with your bandages so you can show your friends in your class how cool
you look.  Sometimes you seem so much older than you are and I have to
remember that you are just my little dude, not even in Kindergarten. I
guess that's because you've been through so much and you've had to grow
up in some ways a little bit faster than most kids.
Tomorrow when you get your CI, the days of us constantly wondering what
is going on with your left ear will be gone. I'm not going to
constantly be asking you "Hey dude, is your ear working? Can you hear
me?"  Anything that we can do to make your tricky life a bit easier, we
are going to do it.  Getting your other implanted right now made sense
for you, for our family and for the world you live in.
Daddy and I are a bit nervous, but we know we made the right decision
for you. Our goal is to give you EVERY OPPORTUNITY that we can. You
give us the best, and we want to give you the best.
Love you sweetheart. You are our everything. Daddy, Lily and I are just
in awe of every sentence you speak, every song you sing, and every word
you read.
With all our love!
Mommy and Daddy
at 4/19/2012 No comments: Links to this post
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My Photo
Christian and Lily's Mommy
I'm a 30something Mom to my two beautiful children, Christian
(6), and Liliana Grace (4) Christian was born Deaf, and was
implanted with his Cochlear Implant at 14 months of age and his
econd at 5 years old. Lily is hearing, and is a handful but a
joy in everyway! When I'm not shuttling my kids back and forth
from playdates, therapy appointments, school, and Target (we're
ALWAYS THERE!), I'm advocating for my son, and all children with
hearing loss.
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