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listen with your heart. speak with love.
Our Family's Cochlear Implant Journey
Tuesday, October 30, 2012
Perspective and Resolution
"Life has to be what we make of the cards we have been dealt"
As a Mom to a deaf child not a day goes by where I don't pray for my
on to have courage and grace to deal with his hearing loss. I'm lucky
that our family has a wonderful role model for that grace and courage.
Check out my dear friend Jenny's article recently published in the
online magazine MobileWomen.org. She's a bit of a rock-star in my book.
at 10/30/2012 No comments: Links to this post
Monday, October 29, 2012
Thanks to Hurricane Sandy, our Halloween plans are uncertain. In the
meantime, I had to share some preview pictures of Marina from The Fresh
Beat Band and my Championship Boxer.
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Her dream come true. At 3.5 years old, all she wants to be is "A
rockstar just like Marina".
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Her Rock Star Jacket!
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He wants a black eye for Halloween too
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Halloween best buds--Christian and Captain Rex Jack. Nothing better
than 5.5 year old boys and Halloween.
at 10/29/2012 No comments: Links to this post
Tuesday, October 16, 2012
Whatcha been up to?
Why does it feel like Fall goes by so fast? Life is fun...but crazed.
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We've tried to jazz up our spread this year. Love the WWP Pink and
Green.
This is what I do on Monday mornings. I lead an amazing group, have a
beautiful co-leader, and feel so lucky to minister. No better way to
tart the week.
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Officially a Green Belt
We hit Tai Kwon Do 2 times a week where my little man is rocking. He
has a blast with his best buds Dylan and Jack and Lily is on baby duty
watching everyone's little siblings. Yes, a 3.5 year old can be a
babysitter!
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Our drop-off and pick-up schedule is crazed with 2 kids in 2 different
places. We have a great carpool on Monday/Wednesday/Friday. Tuesdays
are pretty much the only day that they are together in the morning. The
morning time on the way to school is precious. They have little
conversations and take care of each other. It is beyond sweet.
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Saturday mornings are lacrosse. Chuck coaches, I usually stay home with
Lily or head to the gym. Or host a leadership team meeting...or work.
What happened to lazy Saturday mornings and brunch in Georgetown?
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All work and carpool is no fun so we do find time to play with our
dearest friends. I love how we all have the same taste...and the same
tationer.
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Not sure what I would do without these girls. We do clean up nice,
don't we?
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Sometimes God brings people into our lives for very special reasons.
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Love having birthday celebrations with one of my besties.
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Mondays are time with Miss W. at our old school. The work he
accomplishes takes my breath away. She is just fantastic.
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We spent the weekend with Aunt Ali and Uncle Bu for her baby shower we
hosted. The kids keep asking when the baby is going to pop out.  Lily
has named her Alexa. We'll see...
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I'm trying so hard to just cherish these Preschool days with my Lily
girl. The days go by too fast.
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This is my carpool home from school. How can you not smile? They
eriously make me belly laugh.
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We celebrated Chuck's birthday with a delicious Key Lime Pie from our
favorite bakery!
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I thought this was hilarious...somehow my phone took this picture of me
while I was on Wisconsin Ave. This is what I do. Everyday. All day. I'm
either on my way to or from school, the gym, or errands. Or my mobile
office at Panera. It's a pretty good snapshot of my life right now. At
least now I know I looked pretty ticked off when I drive. I must've
been in traffic. And now I'm worried my iPhone is dying. Oh well.
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Leaf hunts with my baby girl on the way to get Christian. It got chilly
for a day and we're back in shorts.
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She loved this one.
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He dresses himself each morning. This is is favorite outfit. Maryland
pride lacrosse shorts and a skeleton shirt. Classic Christian.
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Nana and Papa sent a carmel apple kit that was too cute for words. The
box is now a coffin for Christian's bear. I also was told that Tigger
is now a vampire.
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We supported our school's art integration program by going to a PTA
dinner at the diner. I had no idea you could get wine at a diner. It
was pretty awesome.
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Lily hasn't napped for a year and a half, but she will always pass out
in the car. He grabbed her hand and they road into downtown DC like
this. So sweet.
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Playing football and tackling the big kids. He is so lucky that Chase
didn't body slam him back.
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Just strolling through Capitol Hill during a Saturday outing for our
family friend's birthday.
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Christian found the GREAT PUMPKIN downtown. He loved it.
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October is the month of birthdays. Happy Birthday beautiful girls!
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3 Moms, 10 kids, and margaritas. Great Saturday night with dearest of
friends.
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We hit up our Volunteer Fire House for their Open House. Jack and
Christian have been obsessed with fire trucks since they were both 2
years old. They are still obsessed.
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Christian is on day 2 of no school due to a nasty virus. He's watched
about 20 hours of Cartoon Network. Poor kid...
at 10/16/2012 2 comments: Links to this post
Monday, October 15, 2012
those eyes
As my morning prayer group was winding down I got a call from our
chool nurse. Christian had a 103 fever.
Sweet boy. He's in PJs, has tiggs, bunny, and Cartoon Network. Feel
better baby boy!
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at 10/15/2012 No comments: Links to this post
Saturday, September 29, 2012
A little tune up.
We are incredibly fortunate to have an AMAZING audiologist who has
taken the time to really get to KNOW Christian and his capabilities.
She is based at Christian's old school, but we are still able to get
ervices through her now that we have moved on. I am thankful that we
till have her on our team.
Christian and Dr. V got straight to work on Wednesday for his mapping
appointment. We concentrated solely on his newly implanted ear .
Christian patiently did all of the testing and waiting as each
electrode was manipulated.
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5 1/2 years into this and I am still amazed.
Watching the programming process of my kid's Cochlear Implants
literally takes my breath away each time. If you haven't been through
it, you really don't know how hard the kiddos have to work, or how much
harder the audiology team has to. As much as it is a science, it's also
an art. The fact that our audiologist knows Christian's academic
trengths and challenges alone helps ensure a quality MAP. And she is
SO good with little ones. Few audiologists have the patience or the
enthusiasm to handle 5 year old boys. Yet Dr. V always manages to reign
him in, to get him to listen and she somehow makes these marathon
programming sessions FUN for my little dude.
at 9/29/2012 2 comments: Links to this post
Monday, September 24, 2012
(insert mommy guilt here)
Lily was cranky pretty much all day. Fussy in the morning, pouty at
chool, and then at Noon when I got her....just a mess. She was full of
ass. She was being fresh. She spent the better part of the afternoon
being annoyed about schlepping to Christian's aural-rehab appointment,
yelling at me from the car seat and telling me I was a bad Mommy.
I flipped out at her around 6:45.
And at 7:20, she pooped on the floor. Like a bad poop. Like yucky tummy
poop.
Poor thing was just sick today. And me, being sick of the fussing
didn't even notice. I've been so wrapped up in everything but her today
that I didn't notice that she wasn't feeling that great.
Guess who did though?
Christian shows so much patience with his little sis. Even today when
he was literally rolling on his floor crying before dinner he just
aid "Bean, stop. You need to just rest, ok?".
So, I'm sitting here waiting to see if this goes on for the rest of the
night or if we're one and done. I'm not feeling that great right now
either. What a way to start a week.
at 9/24/2012 No comments: Links to this post
Thursday, September 20, 2012
Ok, I need a glass of wine.
Christian's teacher stopped me during the chaos of pick-up today and
briefly chatted to me about Listening Centers and headphones. They
tried it out and for obvious reasons he had a bit of a hard time using
the standard issue headphones.
She's saying all this to me in a complete ZOO of kids and parents
picking up and I swear I zoned out, nodded a bit and started having one
of my freak out moments where I totally say the right thing and smile
and nod but my brain is really just spinning out of control and I'm
about to lose my shit (sorry Mom, I know you read this, but it's true.
I totally lose my shit) only to be rescued by a distraction usually in
the form of a 3 year old having some sort of drama or disaster. I then
forget I'm freaking out until 10pm at night. Which is why I'm freaking
out right now.
I don't know why.
If we get him bigger headphones or use his Personal Audio Cable he will
be fine. Just a little accommodation that I didn't anticipate but we'll
figure out.  I just sent an email to his classroom teacher and our
D/HOH teacher to discuss this and everything should be fine.
Right?
My friend told me that the 3 week mark of school is usually where all
hell breaks loose. Christian has been a bit off this week. He's a bit
cranky, a bit emotional and a WHOLE heck of a lot tired. I'm a bit
cranky, a bit emotional and SERIOUSLY tired. I'm now wondering what
OTHER things did I fail to anticipate?
I am SO ready for the weekend. I need a break.
at 9/20/2012 No comments: Links to this post
Tuesday, September 11, 2012
Perfection.
My college roomie and closest friend is pregnant with her first child
and I've been working on putting together THE PERFECT shower for her.
Although, we're trying to not call it a shower because it's really just
a nice gathering for girlfriends and she really isn't a jordan almond
and diaper cake kind-of girl. She loves the Yankees. She curses more
than any one I know. She's this powerful woman who is totally melting
at the thought of having A GIRL! I love hearing her perspective on her
first pregnancy. I love listening to her recount all the details about
her doctors appointments, her registry, and her nursery. I just love
the excitement. It completely warms my heart for so many reasons. I
want to give her a beautiful day. I want it to be perfect.
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She's going to be an amazing Mom.
I remember being pregnant with Christian like it was yesterday...funny
how my pregnancy with Lily was a blur. I'm pretty sure I spent most of
it in the carpool line at Christian's school. I remember planning his
color scheme for his room, picking out the cutest little rugby shirts
at Baby Gap, and doodling variations of his name on countless legal
pads at work. I had this easy and uneventful pregnancy and I was
certain that my little boy, who always measured big and robust and who
even was born healthy, was just as perfect as could be.
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Dreaming of my perfect baby. Photo by Galhouse Photography.
And then this weird motherly instinct prompted me to bang pots and pans
over his head when he was sound asleep in his bassinet because
omething just seemed OFF. And from that moment on, my idea of
perfection was completely shattered and reworked.
I've learned over these past 5.5 years that perfection really is in the
eye of the beholder. I've also learned thanks to a dear friend who
happens to be a paraplegic and a Mom of 2 how to embrace a perfectly
imperfect life and own it and love it and make it YOUR dream.  Having a
deaf kid was certainly NOT in my game plan. I'm not going to sugar coat
any of this and say "Oh, it's such a blessing having a SPECIAL kid".
It's hard. It's REALLY REALLY hard. Not a day goes by where I don't
pray for Christian to have courage and perseverance to deal with the
adversity he faces everyday...even though he doesn't know he's really
facing anything. But, then I also lift up prayers of thanksgiving for
all the little things that this experience has given our family. It's
taught us patience. It's taught us to value every word as a gift---even
to this day when words such as BUTT and POOP SNACK are being tossed
around in a very Kindergarten appropriate way.  It's given me as a
mother the opportunity to really stretch my wings and be a mentor to
other families who are facing similar challenges. Most of all,
Christian has broken down barriers and stereotypes already in the short
5.5 years that he's been here.  I love just seeing all the little
blessings that have come out of this little imperfection.
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If this isn't perfect, I don't know what is.
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Perfectly Imperfect.
at 9/11/2012 3 comments: Links to this post
Wednesday, September 5, 2012
Turn this into a Country Song.
Today was one of those days where literally nothing went as planned.
Lily had one of her nights and we were up and down with her all night.
I woke up to an email from our Deaf and Hard of Hearing department
informing me that the itinerant teacher that was hired to service
Christian decided to NOT take the job.
I went to Target, dug through my bag at the check-out with a FULL CART,
and found out that I left my wallet at home. Awesome.
Drove all the way back, paid, raced home in time for a meeting, only to
discover I bought DECAF coffee. DECAF.
My laundry sink is leaking, oh and I've had unexplained pain in my
abdomen that is now resulting in a series of doctors appointments, lost
gym time and lots of wincing on my part. Awesome.
I'm thankful for my Mom who is checking in on me and my girlfriends who
always seem to know how to rescue me with reassurance, carpool and
taking a feisty 3 year old off my hands. Oh...and everyone pray for
Chuck. He's got a lot on his hands dealing with me these days.
at 9/05/2012 2 comments: Links to this post
Wednesday, August 29, 2012
And....we're off!
These first couple of days of school have been a complete whirlwind and
we're still trying to figure out our schedule. We all have new routines
to get used to. All in all, these past 2 days have gone SUPER SMOOTH!
Our neighbors met us to make Christian's first walk and my heart was so
full watching Christian walk with his big-kid friends (and having my
weet and loving neighbors to support us there!). My one girlfriend
joked that she thought they would have to follow me up with a car to
drive me back the 2 blocks because I was going to be a mess. Luckily
for them, I cried all my tears the night before and I just got a little
misty-eyed as we left our little dude in the hallway as HE WAS
COMFORTING A NEW FRIEND WHO WAS CRYING. Seriously...he did that.
I spent the day wondering what he was doing, praying he was
elf-advocating for himself, hoping he was making new friends, and
getting a bit nervous for his first recess at the big school. I think I
had a pit in my stomach the entire day...but I didn't cry.
At pick-up (which is INSANE BY THE WAY...more on that later), he ran
out of the school beaming telling me "Mom, it was SO MUCH FUN!". I
grinned, and once again got a little bit misty-eyed.
We've walked to and from school with friends these past two days,
exploring our neighborhood and having some popsicles and drinks once we
get home. I've heard stories about meeting new friends on the
playground, playing with old ones, and also about how he got to
"Explain to his friends what a trombone sounds like" in music class.
Love.
I'm so proud of him and I just love how can jump into new situations
with ease.
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My big boy!
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So grown-up!
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She misses him like crazy.
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Loves his back pack!
at 8/29/2012 No comments: Links to this post
Sunday, August 26, 2012
'Twas the Night Before Kindergarten
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Tucked in with Tiggs, Bunny and Whiskey Dog...ready for his big day
tomorrow!
We began this journey with one goal in mind: Get Christian to his
neighborhood or parish school for Kindergarten. Get him TOTALLY
mainstreamed.
At times we took baby steps, with careful consideration of articulation
goals and therapy plans. And at other times, we took giant leaps...like
this past Spring when we decided to go bilateral and get his other ear
implanted. All along the way, Christian took each step in great
wonder. He embraced the moment, challenged his little body and big
heart. He worked hard. REALLY HARD. We landed in the most perfect
environment for a kid with hearing loss where he was nurtured and
embraced at the same time as being taught to persevere and to press-on.
He grew into an articulate, confident, sweet, silly, loving and
incredibly smart little guy who just happens to use Cochlear Implants
to listen and speak. I've said it before, and I will say it again, and
again, and AGAIN--The best thing we ever did was give Christian the
opportunity to learn side-by-side with typically hearing peers during
his preschool years at The River School. He's so ready for this.
5 years later here we are. The night before Kindergarten. In our
neighborhood school, where he will be taught side-by-side with 21
peers, all who are hearing. He will be in the classroom totally
independently, utilizing his self-advocacy skills that have flourished
over the past two years. His backpack is ready, his lunch is packed,
and he picked out a collared shirt with a shark on it to wear tomorrow.
He's SO ready for this.
I'm not worried about the typical Kindergarten worries. He is super
ocial. He can navigate different situations with ease, has great
conflict management, and he is just a confident little dude.
Logistically, this year is going to be a bit EASIER! He's around the
corner from me, as opposed to 40 minutes in traffic away from me. We
get an extra hour in the morning together since we have no commute (we
walk 1.5 blocks). He's been in a 5-day full day program for several
years, so I know he can handle it. Now me on the other hand, not sure.
I'm a ball of anxiety with this transition hiding it from him, but
running to my friends and neighbors for pep talks and red wine. Am I
ready for this?
This is what we've dreamt of, and this is has always been our family
goal. It's happening. It is ALL happening.
at 8/26/2012 2 comments: Links to this post
Friday, August 24, 2012
Last Lazy Summer Morning
Today is the LAST day of summer vacation. As I type this (it's 9am in
the morning by the way) the kids are laying on the playroom floor
watching Little Bill. After lunch we head over to Christian's NEW
SCHOOL to meet his NEW Kindergarten teacher. Gulp. And after that I'm
heading over to my girlfriend's house for wine. Yes, we'll probably be
opening a bottle before 5pm and no I'm not ashamed.
I look at Christian these days and he just seems *OLDER*. He has a new
look. It's a little mischievous mixed with sweet. His face has gotten
longer, he's gotten taller, and he just carries himself like an older
kid. At the same time, he's still my angel. He snuggles and cuddles and
plants kisses on me just because. He's been a bit sensitive these past
few days, and I'm thinking he's a got a little bit of anxiety mixed
with a whole lot of excitement in anticipation of the change coming up.
I'm pretty sure that this entire Summer Lily has been exhausted. The
child plays until she collapses. She no longer naps, swims for hours at
end and has told me several times "I don't want to get bigger". As much
as I ask her to be my big girl, she still really is my baby. Every
morning I hear her little door creak open and she comes into my bed to
cuddle. She is a little girl with BIG emotions and an even BIGGER
heart.
It's been a great summer full of sandy toes from the beach and wet
towels from the pool. As much as I'm ready for the routine of fall, I'm
going to miss these lazy summer mornings.
Some of my favorite summer moments as captured by my iPhone!
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Fun afternoons at our pool!
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Raft Night with Friends!
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4th of July with Uncle Dave!
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Beating the heat in a bucket!
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Christian lost 2 teeth this summer!
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Ice Cream with Cousin Jeff in Michigan!
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Lake Michigan Sunsets.
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Sand Castles in Elk Rapids.
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Floating down the river Up North!
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Date Night Up North at Short's Brewery!
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He makes me coffee now.
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Minnows from the trap at The Bay!
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She won't nap, but she will "Rest" in my bed with Sammy girl!
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North Carolina Ocean Fun!
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Cocktails with my babies in Morehead City.
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Hot Tubbing with Cousins.
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Pool Drinks with my girls
at 8/24/2012 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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