Mommy, Why Don't Some People Have a Cochlear Implant?

That was today's question on our way home from school. I knew one day it was coming, but I was hoping it would happen when I could actually look him in his eyes, rather than fighting traffic on Massachusetts Ave. How do you explain to a 3 year old that he was born deaf thanks to the Connexin 26 gene mutation? How do you tell him that he will always be deaf, that he will always need to wear his CI? I wasn't ready for that in depth of a conversation and to explain the Punnett Square of Gene Mutations. I'm sure that will come later.  So, here's my response in a nutshell, as I wiped the tears from my eyes:

"Oh, buddy, did you know that you make Daddy and I so proud? Well, God made you so special. When you were in my belly (Christian: I was IN YOUR BELLY? DID YOU EAT ME? EWWW!), no honey, when you were just a little baby, not even born yet (Christian: That was like when Lily was in your belly and when Tyler's Mommy had Baby Jake in her belly), yes, just like that. Ok, well when you were in my belly and before you were born, God decided to give you a very special gift. He decided that you were going to have your magic ears".

He was pretty quiet at this point, and just as I was getting ready to continue explaining about his special gift from God and how God just made him perfect, he tells me:

"God shined His light down on me with his magic wand. It was magic and then poof and then His light got really bright. There was thunder and lightening and it was loud. Mommy, do you want to go to the playground with Willis and Josie later?"

I just smiled and told him that I couldn't wait to play with him later this afternoon. My sweet angel boy, understanding in his own little way his special gift. It's been a while since I received one my love letters from God. I'm pretty thankful that He knew exactly what I needed to hear today.

A Letter To Christian

*I decided to write a letter to Christian today. I put this in his baby book, and plan on sharing it with him when he is older. I know there will be a time when he's going to ask questions about his implant, about being Deaf, and about his surgery.*


Dear Christian,

Did you know that your Daddy and I dreamt of you, even before you were here? When you were just a star in the sky, we prayed to Jesus and asked him to bless us with a beautiful little baby to share our hearts with. When you were just a tiny little angel in my tummy, I dreamt of a gorgeous boy, with beautiful eyes.

On the day you were born, the world stopped, our hearts skipped a beat, and we were immediately in love. Christian, do you know that you are the most beautiful and perfect baby we have ever met? I remember staring into your eyes just moments after you were born thanking God for blessing Daddy and I with our perfect boy. I would whisper in your ear just how much I loved you, and you would just stare at Mommy with your beautiful brown eyes. My perfect boy.

Christian, when Daddy and I learned that you couldn't hear our voices, we were so scared. I remember crying, thinking that you never heard me whisper in your ear just how much I loved you. Even though you couldn't hear our voices, you were always such a HAPPY and sweet boy. You always ate so well, and you slept better than any baby we knew. We were so blessed with such a pleasant little boy. Christian, even though you couldn't hear us with your ears, we always knew you could hear us with your heart. You laughed. You played. You giggled. You smiled. Everything about you was perfect.

Sweetheart, everything that your Daddy and I have done for you, whether it was teaching you signs, getting you hearing aids, or helping you learn to listen, it is because we want you to have the best life that we can offer you. We want to give you THE WORLD. When Daddy and I learned that there was a surgery that could give you more opportunities, we wanted to learn more.

My sweet baby boy, tomorrow morning we're taking you to the hospital to get a Cochlear Implant. The decision to do this surgery was not made lightly. We prayed, and prayed, and prayed. Daddy and I are very nervous and very scared but we know that this surgery may help you hear the birdies that you love to watch. We know that it may help you hear the songs that we sing everyday. Mostly, we know that it may help you hear the voices of everyone that loves you SO MUCH.

Christian, you have taught Daddy and I so much. Having you in our lives is the best thing that has ever happened to us. We love you for exactly who you are. With this surgery, we don't want to change you. We just want to help give you the best that we can. We love you, regardless if you can hear or not. And we will always love you for the perfect little boy that you are.

Always and Forever,
Mommy and Daddy

Love Letter

I spent much of this morning trying to focus on my work, while Christian played with our sweet sitter Arina. It was a bit chaotic, as our new cleaning lady was here as well. Despite the craziness, it helped having alot going on in the house while I waited. And waited.

Then, at 12:30pm, I got an email from our audiologist. The email started explaining how they wanted to do one more audiogram on Christian, because the last one that we had at Hopkins showed worse responses than what we got from our private audiologists. She then explained a bit more about what they wanted us to do about high frequency access for him.

Then it said "And you can expect an early summer surgery date".

Whoa. Did that just happen?

After calling my husband, frantically trying to reach my Mom, emailing another Mommy of a CI kiddo, emailing my EI team, and talking out the email over Gmail chat with one of my best girlfriends, I decided I needed to write our Hopkins audiologist back. I asked her to clarify a couple of things. I asked her to confirm that they did indeed, see Christian as a candidate in his right ear. (By the way, this all happened in like 10 minutes).

She wrote me back.

THEY DO SEE HIM AS A CANDIDATE. We'll probably have a surgery date after this next audiogram.

So, after a little bit of crying, a little bit shock, and a little bit more anxiety, I sat down and let it all sink in.

During all of this, being the multitasker that I am, I was opening mail. I received a letter from the Archdiocese, and when I opened it, one single ticket to the Holy Father's mass fell out. It was a complete surprise. While I have been eagerly anticipating Pope Benedict XVI's visit here to DC, I wasn't able to secure tickets to the Mass.

A chill immediately fell over me, and tears ran down my face. I knew that there was a reason that I received the news about Christian at the same time that I received the letter with the Papal Mass ticket. I truly believe that this was God's way of telling me "I've been listening to you. I hear your prayers. I will take care of you and your family. And I will give you an answer". This was a very treasured, very beautiful, love letter from God.

God's Love Letter...

This whole weekend has been just wonderful. We spent it together as a family, not stressing about test results, communication strategies, or the unknown. We just focused on eachother. We needed it. BOY, did we need it.

This weekend was Christian's first with his hearing aids, and he did fantastic. I couldn't be prouder of my little guy. Sure, he got curious every so often about the aids, but he kept them in. Chuck and touched them more than he did, as we were constantly investigating the "buzz". We learned that since his right ear has a higher setting on it (that's the ear that he is profoundly deaf in), it will have more feedback. Sure, it's going to be an adjustment. He has these special little tools, cases, clips, batteries, you name it....all to let him hear. And we're trying so hard to make sure that we put them in right. I did have one moment, when I looked at my sweet little man playing with his new Tonka truck and thought "He deserves better than this". And then he looked up at me, gave me the cutest 6 3/4 tooth smile he could, and I snapped out if. Yes, he deserves better. Yes, THIS SUCKS. However, we're dealing. We will continue to deal. And he will be great. We know it.

Today on our leisurely stop at our favorite bagel shop, I noticed two very nice looking young men walk in. One was really tall with curly hair. The other was of medium build, and I swear he looked Greek (which is part of the reason I think I remember them so vividly, b/c I always look at greek-types wondering if we're related). They were handsome, and they looked just like any other college-age kids...and then they started to sign to one another. I just about jumped out of my seat, grabbed a pen (because I knew my mediocre ASL would NOT help me out at this point) and wrote:

"Hi! My name is Tina. My son is deaf. What's the sign for Bagel?"

Ok. Stop. Look up at what I just wrote.

Forget the fact that I talked to complete strangers (b/c if you know me, you know that's not a big deal). And, yes, I needed to know the sign for bagel, because Christian was CHOMPING on one at our table. I referred to my kiddo as deaf for the first time...FOR REAL. And I WAS PROUD. I was proud to be able to use my crappy understanding of ASL to sign his name to them and to give him is age and to say Thank You. I was proud to sign "I'm his Mommy". But most of all, I was proud of Christian. Meeting those two guys is what my friend calls a Love Letter from God. It's hard to explain, but when you get one, you know it.

This week is going to be one for the record books. We have several doctors appointments, and LOTS of playdates with our friends for the neighborhood. Tomorrow night, I'm heading to Buy Buy Baby with a dear friend of mine to help her register for her shower. A Moms Night Out is in the works with the MOMs Club, and one of my good friends' birthdays is on Thursday. Most importantly, I'm heading to Pittsburgh for a bachelorette road trip for one of my best friends. It's going to be A CRAZY BUSY WEEK!

xoxoxox