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

FINALLY!

Christian received his hearing aids today, and he's doing great. He hasn't tried to pull them off (knock on wood), and the ear molds fit great! We are so excited, and can't wait to spend the long holiday weekend with him, and helping him understand sound. I've uploaded a video that includes his first time with aids...click here!

We are blessed!
Have a great weekend!

Only a couple more days!

FINALLY! We are only 3 more days away from getting Christian's hearing aids. It's hard to believe that it has taken us THIS long to finally get him aided, but it's almost here. I can't even begin to describe how excited we are as a family to get the little guy his ears. Christian's aids will be set low, and gradually increased to high settings as the weeks go by. I JUST CAN'T WAIT!

I know that I want the first words he hears out of his aids to be "I Love You Christian", but I can't decide what the first SONG I want him to hear. Right now, it's a toss-up between Lie in Our Graves by DMB and In My Life by The Beatles.

We've been working on ALOT of ASL, and Christian has definitely picked up the sign for "Milk" and is almost there for "More". I know over the past couple of years, many folks with hearing babies have used signs as a way to communicate with their kids. I think that is AWESOME and a wonderful bonding experience for the parents and child. I will say though, as a Mommy to HOH baby, signing has taken on a whole new meaning for us. Right now, without his aids, signing is the only way that Christian can "hear" us. Even when he gets his aids, we still will have to rely on his signs.

I've been trying to get mentally prepared for Friday--Christian's grandma ordered the infamous Hanna Andersson pilot hats that according to many other Mommies of Deaf and HOH babies, are THE trick to keeping aids and cochlear implants on. Unfortunately, my monkey's has a Charlie Brown noggin', and we need to order a size up!

:)

HAPPY HALLOWEEN!

It was a no brainer deciding what our little monkey would be for his First Halloween!

It's more and more real everyday

Our Early Intervention team came today, and Christian was in his typical happy, flirty, and SILLY mood. It was a really good visit--we talked alot about what he's hearing right now, things that we can do to continue to emphasize his communication skills, and what to expect once the hearing aids come next week.

We also talked about how I, as his Mommy was doing. I cried today trying to explain to the EI folks how I was struggling with Christian's diagnosis. I tried to explain how I want him to be a part of our hearing world, but I also don't want him to not feel a part of the deaf community either. I expressed how we wanted to be sure that Christian was exposed to other children with hearing loss, but how we also had our goal of mainstreaming him to other schools. I also reiterated how important it was to our family that Christian use spoken English as his primary form of communication, but also have ASL as a back-up second language as well. Since Christian will rely on technology for the rest of his life to communicate and hear, he'll need it.

Since we've received Christian's diagnosis, I've gone through the typical stages of grief. I finally feel like I am at the acceptance stage. Today was the first day that I referred to my son as "Deaf". Is it the term I want to be used on him? Not yet.

The Speech Banana

Alot of our friends have asked exactly what Christian can and cannot hear. While the exact sounds that he can make out is still unknown, I'd thought I share an audiogram with the Speech Banana on it. This audiogram shows where different speech sounds (and environmental noises) fall. Right now, without his aids, he is hearing at 80db at best, with particular problems in the Higher Frequencies in both ears.

I just wanted to thank all of our friends and family who are showing such an eager interest to learn more about Christian's loss and our journey as a family. I'll continue to post tidbits like this as I learn them. We are so blessed to have an amazing group of family and friends.

Waiting for his ears...

Everyone knows that I am definitely NOT a patient person (especially Chuck...I can't tell you how many times he says "Pee Wee, just be patient".) Well, of course anything that has to do with my kid, I am DEFINITELY not patient. When Christian failed to come on his due date, and I had to wait almost 2 weeks to have him, I wasn't patient. And God knows I certainly haven't been patient with anything since he's been here, especially concerning his hearing.

So, we waited almost 9 months for his diagnosis...that was hard enough. Waiting these next 10 days for his hearing aids to get here is KILLING me. They can't come soon enough! I can't wait to see my little boy's face the first time he hears his Daddy and I say "I love you" when he has his aids on. I pray everyday that they will do the trick, and our little guy will be able to hear speech sounds like any other 9 month old. I know I have my hopes up, but I also know that aids aren't our only hope and there are other things we can do for Christian so he can hear. I know one day he will be able to. I just hope that day is sooner rather than later.

So the Journey Begins

After getting Christian's test results last week, we hopped on a plane back to Detroit for my brother's wedding (aka My Big Fat Greek Wedding, Part 2). The timing couldn't have been better, and we needed the family and the distraction that the weekend provided. The wedding was a blast, and officially welcoming Aunt Sarah into the family was something that we've ALL been waiting for.

It's amazing how fast everything is going, now that we finally have Christian's official diagnosis. We were formally welcomed into the Montgomery County Early Intervention Deaf and Hard of Hearing program (even though we've been seeing them for 3 months already) this week. Our primary teacher, Mara, also has a hearing loss, and she has been such a wonderful resource for us. She'll be coming, along with other team members, once a week to help us. We're so fortunate to live in Montgomery County. They have one of the best EI programs in the country. Over 80 percent of the kids who start the program before age 2 are mainstreamed by Kindergarten. Our compassionate ENT, Dr. Epstein, had us come in afterhours this week to ask any questions we may of had, and to help us with our game plan.

Today was a bittersweet day for us. We went and had his ear molds made and ordered his aids. While Chuck and are so happy that hearing aids may help Christian a great deal, we are still trying to come to terms with Christian's hearing loss. We know that we have a long road ahead of us, a road that may require lots of pit stops, detours, and even some construction. But, we know that we WILL make it through this journey. We know that Christian WILL hear and speak. We also know that we are so lucky to have the family and friends that we do. Without them, this journey would be impossible to make.

He Can Hear Me In His Heart

I know I'll never forget today for the rest of my life. It's one of those days that will be permenantly etched into my memory.

Today we learned that Christian has a bilateral sensiorneural hearing loss. He has severe loss in his right ear, and moderate-severe in his left. In the short 8 months that Christian has been with us, we've been on this emotional rollercoaster with his hearing. We always knew that it wasn't quite right. I should've been prepared for today. But, when our wonderful audiologist at Hopkins was explaining that Christian has particular trouble with higher frequencies, and that "He probably can't hear your voice because you are at a high frequency", I literally felt my heart break into a million pieces.

Nothing can prepare a parent for this. Nothing.

Taking all of this in, we learned that he could possibly benefit from hearing aids, and at some point, may be a candidate for the cochlear implant. And, we know that his hearing loss is probably not auditory neuropathy, which we were fearful of. We were urged to undergo genetic testing, something I can't even think about at the moment, although I know it's necessary. Our ENT, who is such a godsend, called us this afternoon and is seeing us afterhours to help us process all of this. And, Christian has a consult to get fitted with aids in the beginning of November.

When all of this first started with Christian, one of my dearest and closest friends gave me this story below, called Welcome to Holland. It definitely has helped me try to come to terms with all of this...I read it often. I read it when one of the nice girls in my playgroup complains about all the sounds on all the toys, and I seem to be the only one who wants louder trucks and music toys, just in case Christian can hear them. I read it today, when I realized that our family really is in Holland...

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

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.

Wishing and Hoping and Praying

After months of uncertainty, we are finally going to be able to get the answers we desperately need. Christian has his big test at Hopkins this Wednesday. Hopkins is known for their Hearing Center, and they will be able to give us more insight on his hearing status. While I know that he probably can't hear everything, I have no doubt in my mind that my little man can hear some things. This test will be able to give us an idea of what exactly he can and cannot hear.

We've really been relying on our family and friends for support during this whole process, and appreciate everyone's prayers and love during this difficult time for us. Please continue to keep our little bruiser in your prayers...it's what is getting us through.

2 years...and counting...

2 years ago today, Chuck and I became Mr. and Mrs. It's hard to believe how time really has flown by. I feel like it was just yesterday that we walked down the aisle and said our "I Dos". We made so many wonderful memories that day, that we will have in our hearts for a lifetime. We had an amazing party with our family and friends, and then jetted off to French Polynesia for THE vacation of a lifetime. I remember sitting on the deck of our Overwater Bungalow, gazing at my left ring finger at my beautiful diamond wedding band thinking "What could be better than this?".

Well, for starters, how about waking up at 6am on your 2nd Wedding Anniversary to the cooing of your beautiful baby boy? Yup, that's what it is all about. Sure, sunset cocktails on your own private island are amazing. However, having a family with your souldmate...that's better than anything. We're so lucky, and we're so blessed.

A Mommy Looks at 29...

So, here I am, days away from my 29th birthday. The last birthday I'll have in my 20s. This will be last year I can check the 20-29 box. The days of me skipping over the InStyle "Look Your Best at 30" section are numbered. I'm no longer inching towards 30...and I have to say, I'm ok with it. Seriously, I am.

I've never been freaked out by age. My 20s have been the best years of my life, and every year keeps getting better and better. I feel like I have SO much to look forward to, so why dwell on a number? It's hard to feel old, when your most played songs on your iPod are "La La La " by Bert and Ernie, and "SexxyBack" by Justing Timberlake. My little boy keeps me on my toes, and my family and friends keep me happy. My hubby tells me I'm still as beautiful as I was when I was a early 20-something Dewey Girl. And, thanks to the miracle of Retinol, Alpha-Hydroxy, and well placed concealer and highlighter, the lines won't get much deeper.

And he's off...

For the past couple of weeks, Christian has been making these silly crawling movements, that make him look more like the Hunchback of Notre Dame instead of the cutest baby ever. He would drag one leg behind him, while attempting to move forward. He was trying so hard to get a move on, and finally, late last week he did!

Now, I can't take my eyes off of him, AND I have to clean my floors daily to avoid him being covered in dust bunnies. Our poor cat is completely freaked, because as soon as Christian sees her, he inches towards her in attempt to "pet" her (petting for Christian is more like demon pinching). Stairways are gated, corners are padded, and I am on the constant look-out for potential choking hazards. I'm no longer able to perform long meticulous tasks, now that he's on the go (Let's just say that my Bobbi Brown liquid eyeline hasn't seen the light of day since he started crawling). It feels like just yesterday he learned to pick his head up. Before I know it, he'll be running down the field at Gonzaga. Until then, I'm going to cherish each and every moment with him, because it goes by WAY TOO FAST.

I posted a video of Christian crawling down below...be sure you mute the music video before watching it!

Trying Not To Cross Bridges That May Not Be On Our Path...

As a new parent, you fret over every little sniffle, sneeze, scratch, and sigh. You check to make sure they are breathing, even when you can hear their little baby snores. You try every developmental toy out there to make sure your kid is on track. You only buy organic, you use bottles that are more expensive than some of the wine you drink. You do everything you can to protect your kid. And sometimes, even everything isn't enough.

I think by now, most of our close family and friends know about the journey that we've been on in regards to Christian's hearing. At birth, Christian failed his newborn hearing screens. He's been tested by the top audiologists and ENTs in the mid-Atlantic, all with conflicting results. We've been told "Don't worry, he can hear" two days after we were told "This test indicates a possibility of a hearing loss". We've had to sedate our boy so neurological tests could be done, only to be told that they need to be repeated. Recently, we had a behavioral test done...which he passed. We have at least 2 doctors appointments every week... It's so confusing. We just don't have the answers that we desperately need.

The hardest part of all of this, is trying to deal with the unknown. Not an hour goes by in my life where I don't ask "Can he hear me? Did he hear that?". I've spent countless hours researching the various technologies that can help him. Cochlear Implants, FM transmitters, hearing aids...I have them all bookmarked on my computer. I've watched hundreds of videos on YouTube of kids with cochlear implants. I've written letters to doctors at the Kresge Center at LSU (and the doctors have responded...a big surprise). We don't even know if he NEEDS any of this, and that is the hardest part. Not knowing.

We've been lucky enough to meet a wonderful audiologist through the Montgomery County Early Intervention Program. She's been there for us, explaining what all these tests mean, getting us appointments with ENTs that usually have a 3 month wait list, and being a shoulder to cry on. She's given me her personal cell number, something that I've used often. She calls to check in on us, working as a case manager. She understands what we are going through as a family, and for me, as a Mom. She's a Mommy too...she gets the pit in the stomach, the random bouts of crying that happen daily, and the feeling of failure that you inevitably have. She gets the grief. She's been through it all with her child, who hopefully will have her hearing restored with tubes. She's been a fantastic resource and reminded me of something yesterday, when we spoke about Christian's behavioral test, which he passed.

"Don't try to cross a bridge that may not even be on your path".

She reminded me that we really don't know what Christian's status is. What we do know is that although he had an abnormal neurological test, the normal behavioral test IS a positive sign. She reminded me of what our ENT told us last week, that "There is no way Christian is completely deaf". She told me that as parents, we're doing all we can for Christian. And that we are doing everything right, getting all the tests, and waiting out the lag-time between them all.

Despite these possible hearing set-backs, Christian is doing phenomenal. My little guy is just days away from crawling. He has 2.5 teeth (the top one is coming!), and he is vocal. He is SO strong, and probably the happiest baby you'd ever meet. He loves animals, trucks, and football (of course he does!)

The support that our family has gotten from our parents, grandparents, siblings, and friends is amazing. It's times like these when you realize that it really does take a village to raise a child. Our parents have ridden this rollercoaster right along with us. My best girlfriends have gotten phone calls at 10:45 at night with me sobbing, and they've been there to listen. They've surprised us with offers to babysit so Chuck and I could have some time to ourselves, something that is SO needed since our lives are consumed by worry. We know that there are so many people who are absolutely in love with our son, and will do anything and everything to help him and our family. And we are so blessed.

I'll continue to post updates, now that I have my emotions somewhat under control. We have alot of waiting around to do these next couple of weeks. With several more appointments and evaluations, we hope to try to piece together this puzzle.

Please continue to pray for our sweet little boy and for our family.

Love to everyone....

And....we're back...

We just got back from our first family vacation, and it was definitely an experience. We headed down to Atlantic Beach, North Cackilacky for the week for some much needed rest, relaxation, and family time. After our beach trip, we were home for 3 days, and then jetted off to D-town for some much needed Scarmeas-family time.

Our trip to NC was awesome. It was quite a different scene than all those summers of heading down to Dewey. Instead of our car being packed to the brim with beach chairs, cases of beer and liquor, and 2 bags of cute beach clothes just for me, 95% of the truck was baby gear. Christian did great in the car, even through some horrible weather on 95 (think Twister...Cows flying through the air). We had lots of down time, drank lots of wine, and enjoyed time as a family. It was so nice to be able to spend so much time together. Christian LOVED the pool, and was such a trooper the entire trip.

After a week at the beach, we headed down to Wilmington, NC to spend time with family. We stayed with Chuck's grandmother, who met her great-grandson for the first time. We also were able to spend lots of time with our cousins, who just had twin baby girls. THEY WERE GORGEOUS! We spent an afternoon with my great-uncle and great-aunt, who spoiled us with fantastic food and drink. The last time we saw them was our wedding! It was such a blessing to spend time with them!

We didn't even bother to unpack once we got back from NC. The three of us traveled to Rock City together. Chuck stayed with us for the weekend, and traveled back on Monday. Christian and I stayed with my folks who were more than happy to have their grandson with them for an entire week! I helped my future sister-in-law with wedding stuff (OMG, they are getting married in 2 months), and we had her shower and bachelorette the following weekend. Kate even took a day off, and we went up to the mall and spent way too much time at the Benefit counter. It was a blast.

While we were in the D, Christian cut his first two teeth, started to scoot backwards, and can sit up totally now. It was crazy how much happened in one short week for the little guy.

I was so glad to be home. I miss Detroit. I miss my family, my friends, and just the way of life there. It's much more low key. Christian and I flew back to DC together on our own, which was miraculously, uneventful. THANK GOD!

We both missed Chuck so much. Now that we're back home, it's time to dig out from all of our work emails and chores that I've been putting off.

xoxooxx