Finally!

Earlier this month we went to Utah to have a consultation with a new ENT Specialist. I was so apprehensive about the visit, and I think Rob was too. We were hoping above all that he could give us an honest, direct, final answer about Calvin's hearing loss and long term prognosis. Frustratingly, that's not what we got. I have learned the hard way that it takes an enormous amount of patience and perseverance to be the mother of a child with special needs. 

    We genuinely liked Dr. Shelton and feel like he was being completely honest and leading us in a good direction. He was kind and intelligent and was very respectful of the challenges we've faced and the time that it took us to come to his office. I was very impressed with his presence and how respected he was by his staff.

The Nurses really fell for him and spoiled
him with Cheetos

Waiting to see Dr. Shelton

     He and his Resident, Dr. Mann, reviewed his MRI and CT scans for some time, consulted with their radiologist  and then very tenderly shared his opinion, which was that he did not feel that there is an auditory nerve in Calvin's right ear. He feels that the Dr. and Radiologist who reviewed his scans here in Boise were mistaken and that what they interpreted as a nerve wasn't really one at all. He requested that we go back to Utah on the 26th to repeat the MRI, on a higher resolution machine. IF a nerve was in fact observed there, he suggested that he might send us to Michigan to a very specialized hearing center. They would be able to test his nerve with electrical impulses to see if it can be stimulated that way. If it can be, then he would agree to do an implant. With the information that he had, he couldn't really tell us how much hearing, if any at all, Calvin would receive from an implant. This is what we were told before, but at least now we understood where the confusion was coming from. 

One of the benefits of going to Utah so much is
that I get to spend more time with this sweet lady,
my Grandma Bringhurst. I am so happy that she has
been able to meet Calvin and get to know him. 

     On the way home from Utah, Rob and I had a lot to talk about. We felt like we were finally coming to the end of all the guessing and second guessing and that we were really ready to accept that this was it. Had we been told a year ago that this is what we would be facing, I don't know that I could have made it through the last year. I am glad that I was shielded from knowing this to allow me time to get my feet under me, and give me something to hope for. Honestly, I was sad, but doing ok. Rob is trying. I think he's at the point where he is having to finally grieve and come to terms with his own hearing loss as well as Calvin's. Grieving is very different than feeling sorry for yourself, and I am doing the best I can to support him and allow him that process. He's honestly going through a lot right now. He's STILL on crutches after breaking his leg and having major surgery on it in December. He will be completely non weight bearing until the middle of March at least. Breaking his leg was one of the hardest things he's been through. The pain is constant, he's missed so much work that he's worried about his job, and the medical bills are staggering.

    During the weeks between our initial consultation and Calvin's repeat MRI, we had a pretty decent month. Calvin turned 1, and had a great birthday party. ( I'll post more about that later. ) We have gotten even more involved with the deaf community and tried really hard to ramp up my efforts to not only learn ASL but to get Calvin to use it more. He's doing really well. His personality is so funny, and stubborn. He doesn't like to be held, or sit still. He is so inquisitive and always exploring, touching and feeling everything in his environment. 

     Monday of this week, we headed back to Utah to repeat the MRI and maybe finally, finally know where we were headed. I honestly didn't know what to think or feel about it this time. I was nervous, but not hoping for or expecting a different answer. Truth be told, I was getting really, really burned out on the up and down. Hearing no, we can't do an implant, then yeah, we can, but it might not help him hear, to no we probably can't.... it was a lot of emotional up and down and I think I had just learned to put it in neutral and coast along. Not feeling anything is better than disappointment. 

    We stayed in a hotel in Salt Lake City the night before his appointment. We were going to stay with my cousin, but her whole family was stricken with the nasty flu! We are hoping and praying that they are all feeling better now! Just before heading out the door to his appointment, I went into the bathroom and this is what I saw: Little man being a naughty, normal little boy. I laughed so hard I cried. I had forgotten how fun and BUSY this age is. It doesn't matter where we are or what we're doing, he's getting into something. He reminds me so much of my son Zack at this age. 

  The MRI went really well and was over with pretty quickly. It took Calvin about 2 hours to sleep off most of the anesthesia, but he was still a very drunk and floppy baby when he woke up. He couldn't focus his eyes or hold his head up, and was getting very angry about it. Poor little dude! While he was sleeping, I had time to study his face and marvel at what a beautiful child he is, and how blessed we have been to have him in our lives. He has changed me for the better, and I am forever grateful for his sweet, sweet spirit. 

    The rest of the day was pretty uneventful. We tried to visit some of my family, but Calvin was not really in the visiting mood. He was still groggy and drunk and couldn't even crawl. So we loaded up the van with some vintage treasures my mom saved from my grandma's house for me and headed home. 

    Again on the drive home, we had a lot to talk about. What did we want to come of this, what did we hope to have happen. I asked Rob, "what do you want for Calvin?" His eyes filled with tears and he said, " With all my heart I want my son to hear." I didn't have anything to say after that, so I just held his hand. He was hurting, and I needed to give him space and honor that. 

     We didn't expect to hear any results from the MRI until the next morning, so we were surprised and disappointed when we got to the Idaho State line and realized that we had missed a call from Dr. Shelton. Ahhhh! Talk about frustrating! He left us a voice mail and said that he had good news and would call us the next day. 

     All day yesterday I was anxious to get a call from him. I tried to decide ahead of time how I would react in case I had misheard and it was more bad news. Finally at about 4:30 Rob called from work with Dr. Shelton on the line. He didn't waste any time letting us know the good news. Not only does Calvin have an auditory nerve in his right ear, but he also has one in his left ear and Dr. Shelton sees no reason why we can't go ahead and implant based on the new images he had. Rob asked the one question that had been weighing heavily on both our minds, "How much hearing will he receive?" And Dr. Shelton replied with,"A very normal range of hearing. At least for normal speech and language. He should be able to mainstream school as well." And Rob said," So at least human voice range?" And I heard his voice break at this point and could completely share his joy at knowing that soon his son can hear him. 

     It has taken us almost a year to get to this point and it really didn't even seem real! Dr. Shelton got off the line and Rob and I continued to talk for a minute about what this really means for us, for Calvin and our family. We both agreed that no matter how much hearing Calvin's implant will give him, he is still deaf. He will still need to sign. There will be times when he can't wear his implant and will need language still. 

      Before we even knew for certain what the good news was, we had decided we still wanted to talk to as many people who have gone through the process of a cochlear implant as we could.I think the most important thing that I have learned from talking to them and just through our experience in general, is that we all have an identity that we can choose for ourselves. This has been what I have struggled with the most; it is a very big deal to take a course of action that could change your child's identity. 

       However, I have come to accept and appreciate that Calvin was born deaf. As deaf as you can get. He hears nothing. At first I was sick and panicked and felt like I needed to fix it, or change it. That was the most tragic thing I could imagine and didn't know how to navigate my way through it. Fortunately though, I had been prepared LONG ago to understand, accept and love the deaf community. I am proud of my son no matter what his hearing status is. A cochlear implant or even hearing aid, doesn't change who he is. He's a smart strong, happy baby. Right now he doesn't hear. In a month he will. Either way, he's still Calvin. He's still deaf. The implant doesn't change that he is a child of God, who loved him enough to let him face these challenges and come into my family. It doesn't change that he is bright and beautiful and funny, and I am grateful that I realize that now. 

     I hope beyond anything, that later in life he will look back and be OK with the choices we made for him. I hope that he will be strong and happy and will reach his full potential, no matter what tools or devices he uses to get there. 

    

We're off to see the Wizard...

Tonight I am kicking myself for not having kept the blog very current last year. Now that I actually have some exciting and wonderful things happening, I find I'm having to pretty much write a novel to get caught up! So, I've decided to do a very quick timeline style of events just to get to where we need to be and for current events to make sense. For the rest of you who might need some drama before you go to bed, I can e-mail you the longer, more gut wrenching version at your request. I am certain I will not get many requests for those.

So, here we go:
May 2012
We FINALLY get a return phone call from Calvin's Ear Nose and Throat specialists office regarding the CT scan and MRI and the news isn't good. We found out that Calvin has THREE types of hearing loss. 1) His vestibular aqueducts are enlarged. 2) His Cochleas are deformed 3) His auditory nerve in his left ear is not present and the nerve in his right ear is deformed. Any one of these alone would be enough to make it very hard for someone to hear. But because he has all three, Calvin hears NOTHING. World wide, there are only a handful of people born every year with a complete absence of sound. Calvin is one of them.

In light of hearing this, I wanted to make sure that I understood where we were and what our options were. Because Calvin's audiologist (AuD) was out on maternity leave, I scheduled an appointment with his ENT so that she could clarify.

August 2012
We FINALLY got in to see his ENT (apparently it takes a lot of patience to be the parent of a deaf child).We went to the appointment expecting the Doctor to confirm what the nurse had told us on the phone; that due to the condition of Calvin's cochleas, auditory nerves and vestibular aqueducts,  he was not a candidate for a cochlear implant. Instead, the Doctor seemed very confident that she could place an implant in Calvin's right cochlea, the one ear that does have an auditory nerve, albeit damaged. When I asked how successful the implant would be, she stated, "Oh very. I have no idea if it will give him any hearing though." Those were her exact words. Seriously? How can that be called a success??

Many sleepless and frustrating nights were had at that point. What would you do as a parent? put your kid through a very challenging and expensive surgery on a "Maybe he'll hear, I don't know"? By September I was thinking, no. Let's not do a cochlear implant. Rob didn't feel the same though, and it was a struggle between the two of us. For every measure that I wanted my son to hear though, I didn't want it to come at the expense of so much else.

 I know that to some of you, that may seem unfathomable. To pass up the opportunity to help your child hear sounds downright neglectful. However, the more I have been exposed to the deaf culture, the more comfortable I am with Calvin's deafness. It is so much a part of him now, that I can't imagine him any other way. His personality is strong, and smart and funny. He's quick witted and very bright. Just tonight I caught him playing in his crib instead of sleeping. When I signed, "What are you doing?" to him, he signed back, "Playing" then, "Dancing" and he started to dance.  I would miss all of that if it went away. If he suddenly didn't need to sign, we would lose the level of interaction we have with him. I know there are still some who will judge me for saying I am fine without a cochlear implant for my son. But let me ask you this, is there any difference between him HEARING me say "I love you" and him SEEING me say I love you? In our family now, there is not any difference at all. I know that the ability to hear would serve Calvin well later in life. More job opportunities, better communication skills, better relationships etc. But what if all of that can be accomplished even if he never hears a word?

Moving on to October 2012:
We ran another 5k with the Olive Osmond Hearing Fund (I use the term ran very loosely here. Rob and I took a leisurely stroll and chatted while everyone else scooted around us.) and I was fortunate to be able to meet another AuD. She had a suggestion of who we could take Calvin to for a second opinion. He's a Neurotologist at the University of  Utah, and difficult to get into, but  worth the trip. As she was talking, very suddenly this weight lifted and I felt immediately better about the idea of an Implant. I realized that maybe it's not the idea of an implant that is giving me so much confusion and fear, but the circumstances surrounding it here. Rob felt the same way, so we started the process of getting a referral to go see Dr. Shelton.

And that leads me to tonight. I can't sleep, I have so many questions.. and I really do kind of feel like Dorothy going off to see the Wizard in Oz. I have so much that I am looking for from him. I am hoping above all, that he can give us piece of mind one way or another.

I started this blog to be as educational as I could, and I have not done well by that at all. Please keep in mind that I am not an ENT, Neurotologist, or Audiologist. I am just a mom who has tried my best to understand where we are headed. just like many other moments in my life, I was prepared to have to understand the cochlear implant process long before I needed it. From the first moment we were told of Calvin's hearing loss, I remembered an episode of Scientific American Frontiers that I had watched several years ago, before I ever even met Rob. I found it again and have watched it several times. This is perhaps one of the clearest explanations of the process that I could find, it even shows the actual surgery. Please, if you have the time, watch it. It's about 20 minutes long.

I wish more than anything that every child who gets a cochlear implant could have the kind of success that this little girl has, or like this little guy: 

However, that's not always the case. After making the appointment to see Dr. Shelton, we've been able to meet with our original audiologist. Calvin has been re-tested to confirm that he has no benefit of hearing from his hearing aids 

This test is called the ABR 

This is us in a soundproof booth, I have earplugs in because it would be loud enough to damage my hearing otherwise. 

Just as she has been in the past our Audiologist, Kerry, was very supportive and sensitive to what we are going through, but firm in her dedication to helping us do the best that we can for Calvin. After we chatted for a bit, she very gently said, I want to prepare you for hearing the worst when you go to Utah. I have always been concerned about the anatomy of his cochleas, and I want you to understand that it might not be possible for Calvin to receive an implant. 

A year ago, I would have been even more devastated than I already was to have heard this. However, this time, it didn't even phase me. I listened to her explain what she meant and I understood the complexity of his case so clearly. I know now that even with an implant, it's likely that I will always have to sign with Calvin. Maybe this is what his first Doctor was trying to tell me, and either I failed to understand or she failed to explain. Or maybe it's what I needed to push me to be proud of Calvin's deafness. 

While they are a miraculous medical advancement, cochlear implants aren't a cure all. Not everyone who is deaf can have one, and not everyone receives benefit from them. So while I am hopeful for our appointment, I am going with my heart and my eyes open. I am asking for nothing more than a final say in what is right for Calvin... but even as I write these words I realize that no one can give us that. That is something that Rob and I have to prayerfully decide together. I can ask for clarity, but the courage, heart and intellect to move forward can only come from us.  

Please, if you have a moment, say a little prayer that Rob and I will be guided to do what's right for Calvin. 

Let's Mambo!

The more involved in the deaf culture we become, the more I LOVE IT! I love the Deaf and Hard of Hearing people we have gotten to know. I have never known a more sincere, honest and unpretentious group before. I can only hope that Calvin grows to be as dynamic, successful, happy and talented as the people we've had the pleasure to meet. Who knows what he or any of my kids will do with their beautiful lives..... maybe music? Yep.

This is Sean Forbes, he's a deaf performer, lyricist, and MUSICIAN. That's right, a deaf guy that writes music. He can't hear treble clef notes, but can hear base notes. I love this song- and video. It features the beautiful and talented deaf actress Marlee Matlin. I turn it up as loud as I can and let Calvin lay on the speakers so he can feel the beat, It's adorable!  I'll have to post a video of his "dancing" soon. 

Enjoy! 

New Word!

Today at lunch Calvin and I were working on animal signs. I showed him the sign for horse and then asked where his horse was. He signed horse (as good as can be expected) and then showed me where his toy horse is! (sorry for the crappy videography, I am still learning how to take decent videos on my new phone)
To see a comparison of how Calvin is signing versus what the actual sign is here is the video:

Too Bad, Train Gone

When I first started this blog, I had every intention of writing weekly with updates of how we're doing and what we're learning. I had visions of videos of me signing and teaching the world the wonderful language of ASL.

It was a good plan. But then I woke up and realized, HA! I have four kids, three with special needs, a job, a house I'm remodeling, a not for profit foundation I'm running and a million other little things that suck up my time. The good news is that in spite of it all, we ARE learning. SO much is happening so fast that I am trying  hard to keep up with it.

Every week we have a teacher from the Idaho School for the Deaf and Blind come to our house, and he's been a life saver. I can't even begin to quantify what I've learned from him. Because Mikkel is also profoundly deaf, he has an interpreter that comes with him. Her name is June and she's fantastic. (For the record, she's the one that teaches me the naughty words. I love her. )  During one of our lessons we were discussing deaf culture, phrases, idioms etc; and one of the phrases that I leaned is "Too Bad, Train Gone." It's a statement of, you missed it, you weren't paying attention, too bad for you, I'm not going to repeat myself again... you had your chance, you missed your opportunity to be a part of what I was saying.

It sounds silly to those of us who can hear, but apparently, little things like this have big meaning in the deaf community, and I like it. I have been thinking a lot about my "missed trains" and man, there are a lot. It seems now that I am frantically trying to catch every train I've ever missed.

I am working harder than ever to learn sign language, work, keep up with the house, raise a hoard of kids... but I also want this blog to be as inspirational and helpful as I had originally planned. So, pardon my ineffective first year while I cried, grieved, learned and grew. Here's to a much more productive, educational, humorous and effective second year!

Here is my new motto towards the goal of no more missed trains:

"When you do nothing, you feel overwhelmed and powerless. But when you get involved, you feel the sense of hope and accomplishment that comes from knowing you are working to make things better."

A Beautiful Soul

Like everything I've posted on this blog, this is something I've started to write it and then stopped, second guessed myself, decided not to publish it.. and then let it eat at me until I decide to do it. But I had an experience a few months ago that I don't want to forget; and want to be able to share with Calvin later in life.

Earlier this year we decided to attend a deaf ward in Meridian. For those of you who are not LDS, ward is our word for congregation. This has been special for me, as I mentioned in an earlier post, I grew up in a deaf ward. Our first Sunday there was a lot more emotional for me than I meant for it to be, but I had so many sweet memories of people I genuinely loved and admired while growing up.

Before I go any further, I have to make sure that I make it clear that I am not a missionary or a standard by which to judge righteousness. This post is not intended to woo anyone into joining my church. Lord knows I struggle daily to define and redefine and live by what I believe, and I could never expect more or less from anyone else.  I am happy and content with the fact that many of my friends and my husband come from so many different faiths and beliefs. I look at a person's heart and prefer to judge them for what is written there, not for what pew they do or don't sit in on Sundays.

So then, why am I LDS? Because there are some doctrines that are so inescapably beautiful to me that I cannot walk away from them. One of them is the doctrine of an eternal existence. I find great comfort in the idea that I knew my friends and family before I came to this life, that I knew I would have trials and that I would struggle, that my children knew me and agreed to live the duration of this existence with me, even though they knew I would be so imperfect.  The first Sunday that we attended the deaf ward, I was reminded of this principle and came away from it with a completely new perspective on my own purpose in this life.

The first Sunday of the month in every LDS ward around the world, the main meeting is open to the congregation for sharing of testimonies. Sometimes it's hit or miss with how spiritually based the testimonies are, and I have definitely learned to value a true and genuine spiritual experience, no matter how humble the source.

That Sunday we were listening to the testimony of a woman named Anna. I will admit, I was apprehensive when she got up to speak. I had watched her interpreting the hymns and I blatantly admit that I didn't think she was doing a very good job. Her movements were jerky and not fluid at all. Her facial expressions were awkward and angry. It wasn't the beautiful, graceful deaf music that I remember growing up. As soon as she started to share her testimony though, I was so embarrassed of how I had judged her and even said under my breath, "Shame on you, Mindy."

 At 3 months old, after an improper dose of immunizations were given, Anna was left able to hear, but her vocal chords were so damaged she cannot speak. She was left without most of the left side of her brain functioning, and has struggled with epilepsy since then. As she shared her testimony through an interpreter, she shared that at one time, out of frustration she cried to a friend, and asked "Why? Why me? Why did this have to happen?" The answer that she provided was a simple reminder of some of the most fundamental beliefs in my faith, and I was grateful that she had the courage to share it. She said that she was reminded by her good friend that she knew before this life that she would have trials like this, and that she wanted to come here anyway.

 As she continued on, I realized that Calvin's hearing loss isn't my struggle, and that maybe, he's stronger than I think he is. Maybe, this is something he knew he would endure. My job isn't to be angry or resentful that Calvin is deaf. My job is to recognize that he knew what his life would be like, and agreed to it anyway.  My job is to teach him what he needs to know so that he can grow, and learn and live up to his full potential, and then get out of his way and let him fly. This isn't to say that I can't grow spiritually in this process, because believe me, I have.

As a mother though, I think it's so easy to take responsibility for everything that happens to, because, about and around our kids. That's a dang heavy load and it can really be exhausting. This insight that was given though, was so enlightening and refreshing... and actually liberating. It was a sense of relief that I felt to know that maybe Heavenly Father allows my children to face challenges and not ALL of them are because I am not always the best mother I could be. We ALL knew what trials we were going to face. To what extent, I can't tell you. I don't believe that it was a perfect knowledge with a very clear vision of the future, only God has that. But I do believe that it was an awareness and more importantly, acceptance.

Time and time again I have been astounded by the lessons I'm learning both through Calvin's disability, and the people who have come into our lives because of it. I will forever be grateful that I have children who knew me well enough to know that one of my greatest periods of growth would be through the lessons he taught me.