Grumpy.

Every once in a while I'm allowed to leave the happy place that I am in. I'm allowed to sit back and pout about the fact that Christian is "different". I'm allowed to stress out about a broken piece of equipment, and then kick the door because it's just not fair that my 3 year old boy has to be deaf. I'm allowed to think that the little piece of technology that I am infinitly grateful for is also a HUGE PAIN IN THE ASS.  I'm allowed to attempt to do yoga to calm my nerves and then decide that the only thing will do the trick is a jumbo box of Reese's Pieces. I'm allowed to do that. I'm not happy that I did it, but I did. I sat on my floor watching a yoga dvd while eatting candy that I stole from my kids. We're 2 years into our CI journey...I thought I'd be over these grumpy moments by now.

I'm  having one of those days today that come along every couple of months. I'm just grumpy. It's pool season and he can't hear a darn thing because his CI and hearing aid must come off.  The humidity has also hit DC, which means my little guy is sweating a lot, which means that the Topstick Tape that we use to lock his processor in place needs to be replaced at least twice a day to keep it on. The humidity also means failing coils, of which happened this morning, two days before we leave for another road trip. I know that I need to be careful about venting about these seemingly "little things". I know that we are ridiculously blessed that Christian is doing as phenomenal as he is. But these "little things" creep up and crunch up on me and I just can't deal sometimes. 

Most days, I'm basking in the beauty of Holland. I love Holland, don't get me wrong. I wouldn't trade my trip here for anything else.  I just sometimes need a vacation from here, preferably somewhere that I can drink fruity rum drinks and that has amazing shopping. 

Old Wounds Are Hard To Heal

I'm furious.

Not because of something that happened today, yesterday, last week, or last month. Not even something that happened last year.

I was in full nesting mode this evening, clearing out my desk, making labels, and getting everything in order to prepare for our little girl's arrival. I went to go place Christian's updated audiogram from Hopkins in his medical binder, and I started flipping through the pages. This binder is our bible. It's thick, and holds every single medical record I have on file for this kid that has to do with his hearing loss. It's meticulously organized and labeled. It comes to every appointment with us. All the contents are even scanned onto an archived drive for "just in case" moments.

At first, I was glancing at how much he progressed from going unaided, to aided, to implanted. Then, I flipped through our CI candidacy section, re-reading speech-language evaluations, genetic testing results, and even the psychological evaluation.

Then, I flipped to the only tab in the binder that isn't labeled, yet I know exactly what's in there.

The first document in that section is the red note that was given to us after Christian's newborn hearing screen. You see, at our hospital if your child passes the hearing screen, you get a green note with a smiley bear, which details the OAEs that they did, and a signature. If your child "refers" (come on, just call it what it is, it's failed), you get a red note, also with a smiley bear, that details the OAEs, and which ear(s) were tested. Our red note said that we referred on the right ear, but passed on the left...and then has a note on it "Unable to acquire OAEs in right ear, due to fluid in ears from C-Section delivery".

The second document in this section is a packet of information from the first ENT's office we went to to get Christian evaluated. A note from the ENT on the front to our pediatrician says "Normal hearing per attached OAEs. Possible eustachian tube dysfunction due to fluid in ears from C-Section". Yes, this was the well-respected doctor at one of DC's largest ENT practices who looked me, the brand-new Mom, in the eye and said "Christian can hear perfectly, look at how responsive he is".

The third, fourth, and fifth documents in this section are all from our very reputable Children's Hospital, all of which show no responses on his OAE, but yet in the notes section all have varying forms of "Needs more testing, refer to X audiologist".

Now I ask myself why didn't I ask more questions? Why did they piece together OAEs and DPOAEs at this office? Why did they assume that his hearing loss was due to fluid from a C-Section delivery? Were all of these doctors in disbelief?

Why didn't ANYONE...ANYONE just tell me he was Deaf? Why did it take 9 months for my little boy to get amplified? Why couldn't all these doctors, audiologists, nurses, and even social workers look me in the eye and tell me that my child is Deaf. Did I look like I couldn't take the news? Is Deaf considered a dirty word among all these hearing loss professionals? WHY COULDN'T ANYONE HELP MY SON?

Knowing what I know now, Christian should've never have passed any portion of any screens in the hospital, or any OAEs that were ever done in any office. It wasn't until we FINALLY got to Hopkins that we got any answers. It wasn't until we got to Hopkins that we were looked in the eye and finally told what we always knew--that our son was Deaf.

So here I am. It's been 2 years since Christian was born. 2 years since we had that first test in the hospital with the red note and the smiley bear. And even though it's been 2 years, I'm still FURIOUS over how everything happened (or didn't). I've learned to control my anger about Christian's actual hearing loss. I've learned to see past it. However, on days like today, when I revisit the first part of our journey with him, I get so angry. And I think I always will.

I'm prepared to possibly get another red note with a smiley bear in 2 short weeks when our daughter is born. And if we do get that red note, I'm going to cry. I'm going to be sad. Then, I'll make the calls I need to make, put our action plan in place, and make sure that we never, ever, have to go through what we went through with Christian once again.

As a parent, you want your child's life to be better and EASIER than yours. A hearing loss, no matter what level, makes a child's life hard. Then again, having a Deaf child is all I know. I don't know what life is like without pilot caps, ear molds, or topstick wig tape. I don't know what life is like without modeling language the way that I do, constantly narrating my life. I don't know what life is like without sign language. I don't know what life is like without running to the Dry-n-Store first thing in the morning to get all of the equipment ready to turn on my kid's ears. I don't know what life is like without having a Deaf child.

Just when I think I've gotten through the grief, it appears again. I'm sure my pregnancy hormones have something to do with it. When I think I've got things under control, it sneaks up on me. I guess I should just come to terms with the fact that a part of me will always be angry, and that same part of me will always be heartbroken for my sweet son who doesn't know what life is like without his magic ears.

DA Beach...Round 2

So, I know I'm lucky. We're on our 2nd beach vacation of the summer, this time in North Carolina. We're with Chuck's family in this great big house right on the water. We had a rough couple of days getting Christian used to his new surroundings, but now he's sleeping like a champ and back to his silly self. In fact, I have a new word to report:

-occer (Soccer)


Maybe it's the pregnancy hormones, or maybe I just still haven't finished the grieving process, but I had a couple of hard times these past few days. Most notably was yesterday, watching my son with his hearing cousins, splash in the waves. I had this rolling wave of my own emotion come over me, with flashes of him growing up as a teenager, boogie boarding in the waves, but not being able to hear them crash around him with his processor off. I started feeling a bit sad, thinking that while he could hear our voices yesterday on the beach, could he hear the waves? The pelicans? The wind? I think I am having a really hard time not knowing what exactly he is hearing, and how he is hearing it. I'm hoping that some of my favorite adult CI users could give me some insight on this :)

Other than a couple misty eye moments, we're having a nice time once again as a family. Christian is enjoying his time with his grandparents and cousins, and I'm enjoying these last few days of summer before my baby starts school next week.

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.

Pass the Tums please...

I woke up this morning with the most horrible heartburn and just flat out anxiety. My usual cup of coffee that gets me going just amped me up even more. I am not quite freaking out, but just having alot of what I like to call "nervous tummy".

Today is the day that the CI Candidacy Team at Hopkins will be meeting about my little man, discussing the possibility of implanting him. I know that meeting is around lunchtime, but I'm not quite sure when they will notify us of the decision. This whole process has been so emotionally trying on me. I thought the initial shock and grief surrounding our initial diagnosis was tough, however the candidacy process for me has been worse. I can't even explain it.

So, here I am. Waiting. Praying.

Protecting my Cub

I posted earlier this week about how my blog was picked up on an AllDeaf.Com message board. My family, my journey, and my son were completely misrepresented. My choices were judged. My family was criticized. And I had no idea it was going on.

So, I visited the board, corrected the mistakes, and made amends with the original poster. She actually is a very sweet girl, who has been implanted, and I've checked out her blog a couple of times.

I know that having this blog means that complete strangers will view it, and I am completely ok with that. I know that many parents of newly diagnosed kids with hearing loss visit this site, and I am so glad that my experiences can be a resource for them. This blog has allowed me to connect with an amazing group of parents who I view as one of my top resources and support systems throughout our journey with Christian. We share our ups, downs, good days, and bad days with our D/HOH kiddos. These parents are a very important part in our support system.

The whole experience on AllDeaf.com shook me to my bones. I'm not Deaf. Not a day goes by where I don't wish that I was Deaf so I could know what my boy is dealing with. I just was so shocked to see complete strangers in a community that I am so desperately trying to learn more about could just pass judgment about a family and a little boy that they don't even know. It made me sick to my stomach. It made me so sad for Christian. It made me think about Christian's future....is this what he is going to be facing in his life? Will he be forever judged?

Then, I looked back at my letters, my emails, and my blog comments from the dozens of parents and families that I have connected with this past year. Not all of us have the same communication methods or degree of hearing loss. However, we all have a mutual respect for our children and each other. We all support each other, regardless if our kids are aided, implanted, or not. These are the type of people that my family needs in our life. We need the positivity right now.

All I can say is Ugh.

Ugh. That's how I feel right now. I am tired. I am drained. I am feeling a bit of burnout at the moment. Today was a very busy day, in the middle of a very busy, very annoying week. I really....really....REALLY need a break.

We finally were able to get Christian's FM system hooked up today via our private audiologist. Despite the added length to the aids, he seems to be adjusting to it well 2 minutes into me wearing the microphone, Christian decides he needs to grab it, and breaks the clip. Fantastic. I have rigged it with a hair clip and hair tie while I am Googling searching for another clip. If anyone knows where to get new Phonak microphone clips, please let me know!

We plan on using the system in noisy situations, like playgroup, class at Imagination Stage, the car, and the grocery store.



It was yet another day of shuffling the monkey around from doctor to doctor. After the audiologist this morning, we came home for a couple of hours to play and have lunch. We then were back up to Hopkins for a mid-afternoon appointment. Today we had our Auditory Skills Assessment. This was the first appointment that we had in this entire process that I left feeling unsure and not confident at all. I have great respect for the teacher we met with today--I just think that it is impossible to get to know my son in one hour. She mentioned to me that she wants us to continue to work on high-frequency sounds with him. I'm just not sure what else I can do, or what my Early Intervention can do. I feel like I know Christian better than anyone, and I truly feel that he is giving us all that he can. I know as his Mom, I certainly am.

So, ugh. We have to go BACK up to Hopkins bright and early tomorrow morning for our Psychological Evaluation---our last appointment in the candidacy process. The team up there will then meet next Tuesday to discuss Christian, and recommend our next steps. I just want an answer. I am really looking forward to our EI appointment tomorrow afternoon (yes, another day with two appointments) so I can chat with our teacher about all of this. Miss M, is amazing. She has a hearing loss herself, and is a Mommy. I feel like she just gets Christian, and our family. I feel so fortunate to have such an amazing EI team on our side. Every single person in Montgomery County Infants and Toddlers has always jumped leaps and bounds for my son. They make our hard times just a bit easier. I'll take anything that is easier these days, since everything seems to be difficult for us.

The Difficult Choices...

So, this blog is for everyone who thinks that I have "IT" together. On the outside, I totally do. Thank you notes are written, the house is pseudo-clean, I volunteer, and I put Cheerios in Waterford. I wouldn't call all this having "IT" together. I would just categorize all of that as ways I deal with not having "IT" together at all! It's like that MTV True Life show...except instead of True Life: I'm a Beauty Queen or True Life: Engaged and Underage (MY FAVORITE!!) my show would be called:

TRUE LIFE: I'm a Mom of a Deaf Baby Who Has No Idea What the Heck She is Doing


I was talking to my good friend on the phone yesterday. Our husbands were childhood friends, and I am lucky enough to call her my friend. We're both Mommys (she has 3 with one on the way...I call her my "Guru"), and we both are OBSESSIVE when it comes to scrapbooking. We were chatting about our journey with Christian, and she said "You and Chuck have had to make so many difficult choices in Christian's first year. We really admire you".

After we shared some laughs about our kids and families, we said our good-byes, and I got to thinking....we have had to make difficult choices, and I wonder everyday if I am doing the best thing for my kid.

I am having an INCREDIBLY hard time trying to figure out how and where my kid will fit into the "Deaf Community". I will be the first to admit that I KNOW NOTHING ABOUT THE DEAF COMMUNITY. I've been lurking on many DC websites, trying to learn more about my son's culture. I'm learning that there is alot of debate about being "Deaf Enough", especially when it comes to CIs and whether a family choses to use ASL in the home. I'm terrified of my kid getting rejected should we chose to get a CI. Sure, our plan right now is to mainstream him into our public schools. But what if he wants to go to a Deaf School? Will he be able to relate to the kids there? Will he be "Deaf Enough"?

Our family game plan has always included ASL. To me, it's a part of who Christian is. And that's just me. But, our family game plan has always included the hope for him to be oral and use spoken English as his first language. I've always seen this as a way for him to have a piece of both of his worlds. ..or is it? In all honesty, I am completely freaked out that the choices I am making today will impact his adult identity too. I would give anything to walk in Christian's shoes. Everyday I wish that I was Deaf so I could understand where he is coming from. It, for lack of a better word, SUCKS that I haven't got a clue about his community or his language. I'm the one who is supposed to be TEACHING him.

I know that you don't have to be a hearing Mom to a Deaf baby to have these freak out moments. And don't get me wrong, I just don't freak out over him being Deaf. I freak out over making sure I raise a strong, yet sensitive man. I freak out because I wish I would've paid more attention in gym class when we talked about the rules of soccer and football(I was a figure skater. If it didn't have sequins or glitter, I wasn't interested).

I know that all parents have difficult choices to make. And I know that there are a million and one families who would give anything to ONLY have to deal with the choices that I make everyday. I try to keep that in perspective. I try to make it a point to thank God everyday for my miracle baby. I also try to take a step back, and know that I'm doing the best I can. But, it's hard. I guess that's why they call Motherhood the toughest job on earth.

Lucky Number 26

Sunday night, around 8pm our phone rang. The Caller ID tells me that it's our Geneticist from Children's Hospital. My stomach rolls, I look at Chuck, and pick it up. My first thought is "Whenever a doctor calls you this late, it can't be good".

We have a 10 minute or so conversation. I ask questions. I'm stunned.

I hang up. I cry.

Ok, I sob.

I struggle to get the words out to Chuck. He tells me to get it together because he wants to know what the heck is going on.

"It's Genetic. It's Connexin 26".

Thank God that I have a practical, put-together, ENGINEER for a husband. Chuck has this amazing ability to get to the root of a situation, remove the emotion and get to the facts...which, for everyone who knows me, knows that's something that I can't do on my own. Maybe it's because I'm a Mediterranean woman who wears her heart on her sleave. Whatever it is, it's just the way I am. And Chuck balances me out perfectly.

We sat down and I explained to him what the doc explained to me. As the facts were leaving my lips, I was slowly starting to realize that the news is not bad at all. In fact, it's good.

In very simplified terms, Connexin 26 is a protein that helps the inner ear function. When the protein is disrupted, the functioning of the inner ear is disrupted...resulting in a hearing loss.

It turns out, that Chuck and I are hearing carriers of the recessive mutated Connexin 26 gene. 1 in 35 people in the population carry the recessive mutation, and are called "Hearing Carriers". Chuck and I are hearing carriers. One of our parents on each side is a Hearing Carrier too...

Think back to your biology days doing Punnet Squares. Chuck and I each carry a BIG R (which is the dominant hearing gene) and a Little r(the Recessive mutated gene). We each passed down our Little r's to Christian.

It turns out that as Hearing Carriers, we have a 25% chance in each pregnancy to pass down the recessive gene to our babies, resulting in a hearing loss. Talk about odds...

Over the past several months, Christian has underwent a myriad of testing from renal-bladder ultrasounds, EKGs, and complete opthamological testing to rule out any other syndromes that may present themselves with the hearing loss. Due to the Connexin 26 diagnosis, we now can almost certainly rule out other syndromes, which is FANTASTIC NEWS. With Connexin 26 deafness, it usually is not progressive. We also can be pretty confident that his hearing loss is NOT due to a malformed cochlea. Which is even more wonderful news, as it makes the possibility of a Cochlear Implant for our kid even more real. Alot is known about Connexin 26, which is fortunate.

This diagnosis FINALLY puts the missing piece in this puzzle of Christian's hearing loss together. As his Mommy, I can FINALLY stop wondering if his Deafness was something that I caused during the pregnancy. I can't tell you how many times I wondered if one glass of wine did it, or when I was sick on-site at my last Convention that I directed. I am FINALLY free of the guilt. Sure, it's alot to take in. Sure, it absolutely SUCKS. However, as always, it could be worse. If this is all we have to deal with, we're lucky.

Genetic Testing....my thoughts...

I've been putting off posting an update about last week's Genetic testing at Children's. I haven't had that much time to really process it. I've been avoiding thinking about it. It wasn't a pleasant experience (although what part of this whole journey has been?), and it was definitely the hardest thing for me to deal with since the actual diagnosis. I mean, OF COURSE I want to hopefully find the root of Christian's loss since it is such a mystery to our family. OF COURSE I want to try to identify any other syndromes present (hopefully we can rule them all out). OF COURSE I want Christian to know about his loss for his future family. But, do I really want to know if I passed a gene onto my child that would make his life A LOT different and harder than mine? Do I really want to find out that my other children will be or most likely be or have a 25% chance of being deaf? I don't think I can deal with that yet.

I know it's completely normal to have all these guilty feelings. "They" say it's part of the grieving process. "They" say not to worry about these feelings, that it's completely natural. "They" even say that these feelings may never go away. "They" also say that sometimes there is a reason for everything and this is all part of God's plan. I'm not sure I believe everything "They" say....I can't imagine feeling this way forever.

Some folks have asked us about this test and our plans for more Children. Chuck and I want more children. Period. Regardless of these results, I hope that we will be as lucky as we were with having Christian. A friend of mine who is expecting her first baby asked me how hard it was parenting a deaf child, and how it must be such a stretch....in all honesty, I can't imagine it any other way. And other than having a slightly collicky baby in the beginning, Christian is an easy baby. He has the most loving, silly, and sweet personality. So, the possibility of us having more deaf children isn't a concern.

It all goes back to the "Did I CAUSE THIS?" question. I know I'm going to need more time to deal with these feelings. The bottom line is that no parent wants their kid's life to be difficult. Every parent wants their kid to have better than what they had. Our philosophy is that hearing or not hearing, we will do whatever it takes for Christian to have anything and everything that we ever had and more.

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.