Tuesday, March 25, 2014

On Being A Mom of a Deaf Child

I've been thinking about this post for some time simply because we have had a great couple of months in regards to progress we're making and I am excited to talk about it.  But first, it should be said that I absolutely love being a mother - much more than I ever thought I would.  It challenges me, exhausts me, intimidates me, fulfills me, and gives me the greatest satisfaction of anything I have ever done.  And Gordon is a joy. He is a great baby and I couldn't imagine loving any child more than I love him.

Finding out Gordon was deaf was the most devastating moment of my life.  I can still walk through the events of that day like it was yesterday - what I was wearing, people I talked to, what I ate.  The diagnosis was a process although I knew something was wrong from the very beginning.  I am grateful for the wonderful 24 hours that we had with Gordon before the first red flag was raised.  Before anyone suspected something was wrong.  In the past 10-15 years, most states in the USA have adopted legislation that mandates hearing screening for all infants.  This typically happens for a baby in the middle of the night while the mom is asleep.  The baby is wheeled back into the room with a cute certificate that says "I Passed" blah blah blah.  When they took Gordon for his test, it was 2:00 am and I was awake, staring at my new baby boy.  So, I went along.  And I watched him fail his first ever hearing test.  OAE (otoacoustic emission) testing is not always accurate and the audiology tech reassured me that we could try it again the next day, to be sure to get it right, and he wouldn't have a problem for sure. "I've never had a baby that didn't pass" she said.  So, the next day before discharge, we tried again with the same technician.  Again, Gordon failed.  The attending physician on duty that morning told me not to worry and that 4% of babies fail but then 8-9 out of 10 pass later.  But, seeing the worry on my face, she called the audiologist who was so much more reliable, to test him once more before we left.  Again, he failed.  Leaving the hospital, I knew.  I knew something was wrong.  We had another OAE scheduled for a week later because most of the time the baby will pass once the vernix in the ear dissolves.  My dad came over that night to give Gordon a blessing, but I knew. The next week, I tested Gordon's hearing myself over and over, clapping near him, making loud noises in his room, etc.  He never looked, never raised an eyebrow, opened his eyes, startled, or made any indication that he could hear.

A week later, we repeated his OAE back at the Hospital.  Again we met the same audiologist.  Again we got the same result.  Fail.  I could see her concern all over her face.  She had us schedule an ABR (auditory brainstem response) test for a few days later.  This test actually measures the brain activity in response to sound.  We showed up that day, Gordon was 10 days old, and she took us into her small, dark room.  Gordon was sound asleep as they attached the little electrodes to his sweet head.  I then sat there, weeping, as the audiologist got "no response" after "no response".  For over an hour she tested him.  She then sat in front of us and told us that our child had a profound sensorineural hearing loss.  He would never hear.  My grief was indescribable.  I didn't even know what it meant, but I knew my hopes and dreams for my child were changed forever.  My airplane just redirected from Italy to Holland.  (http://www.our-kids.org/archives/Holland.html)

The very next day, my mother and father were to be set apart as mission presidents and were going to be entering the MTC a day later.  Looking back, it was kind of an out of body....week.  I knew I was going through the motions, but I felt like I was watching it all from somewhere else.  I was trying to love this new deaf baby that I had, mourn the loss of the hearing baby I thought I would have, say goodbye to my parents for 3 years, figure out how to be a mother to a newborn, and keep living.  It was the hardest time of my life.  I cried at the drop of a hat.  Poor Gavin.  I was kind of a disaster.  At the time, it seemed like the worst timing for everything to be happening.  But, all of my siblings came into town for my parent's setting apart, and they were also there for our diagnosis which was more of a blessing to me than I realized.  We had many sweet moments together and I've never felt so much of their love.

So, we plowed through.  It felt like we were seeing doctors/audiologists constantly.  He was evaluated by everyone who came to see him, which did (and still does) bother me, although I'm much less sensitive about it than I was before.  The weeks went by, Gordon continued to grow and develop like any baby and I learned more and more about what we were dealing with.  The state department of health got us started in the Parent Infant Program for deaf and hard of hearing children.  Our audiologist fitted him for hearing aids and we still fight a daily battle to keep them in. Also, for months and months we were on pins and needles because we didn't know if he would be a cochlear implant candidate or not.  His MRI seemed like it would never come.  I felt like we were making decisions on his behalf every day that would affect his life completely going forward.  I couldn't have made it without Gavin, who took a different approach to coping than I did, but who was a bright shining light in my dark world.  Gavin kept my head above water.

Parenting a baby that can't hear is HARD, and not always in ways you'd think.  Gordon would SCREAM in the car, 100% of the time. Not just cry or whimper, but wail.  I would just cry in the front seat knowing that there was nothing I could say to calm him down until we got where we were going.  I really had to build up the motivation to go anywhere since it was always a struggle.  I had no way that I could let him know that I was there with him, aside from pulling over, which I had to do from time to time.  I still can't call his name to get his attention to look at a book or toy, although we are getting better at alternative attention getters.  When someone comes into the room and wants to say hi to him, we have to motion to him or even physically lift him to get the person in his field of vision.  TV and movies have absolutely no meaning to him, which means very little, if any, screen time.  Things are just different and because I hear, sometimes it is unnatural to me that he doesn't respond a certain way.  I often felt a little resentment and a lot of jealousy any time I heard anyone complain about something their hearing child was doing.  In my head I would always think, "At least they can hear you."  I still sing to Gordon every night before bed, and although I wish every day he could hear me, it doesn't sting like it first did.  I don't think I'm getting calloused, just better.

Gordon is progressing beautifully.  He makes wonderful vocalizations and it seems like he can hear the low frequency vowel sounds (ah, oh, uh, etc) and copies us all the time.  He never makes a repeated consonant sound like ba ba ba or da da da since consonants are higher frequency sounds that he largely cannot hear.  I dream of the day when I hear him say ma ma - something that most kiddos have done by 7 months.

But, one day, he will say that.  Gordon had an MRI in February, which showed that his head looks perfect like any other kid's head.  All the structures are there, and he appears to be a perfect cochlear implant candidate.  We are beyond relieved that we are going to be able to give him the option of a hearing life, although this also means that our problem is likely genetic and all of our children will face a 25% chance of being born deaf.  Gordon is going to be able to go to mainstream schools, learn an instrument, play on regular sports teams, serve any mission, and have a successful life.  But it won't be without a lot of work.  Amazingly, children who get this done at such a young age are basically caught up with their peers by the time they turn 3 years old, which still blows me away.  We can't wait to get it done shortly after he turns 1.

We now are having therapy 2-3 days a week formally, but the therapy goes on all day every day at home.  I feel the pressure of his success resting on my shoulders, and it scares me.  I feel unequal to the task, but am grateful it's mine.  Gordon is already a blessing in our home and it's a privilege to be his mother.  He is happy in his quiet life, and I can only imagine how complete his world will become once he has full access to sound.

I've received amazing support from everyone around me, especially our families.  I also feel like I've been inducted into a special society for parents of children with special needs and any time I come across a parent of a special needs child, I automatically feel like we're friends.  I hate to be exclusive about it, but there really is no way to know what it's like unless you're in.  It's a club that no one really wants to be in, and yet, it's nice to know you're not alone.

Every day has hard moments and I'm sure there will be even more to come.  But I know Gordon can do it, and (most days) I think I can too.

Thursday, March 6, 2014

Getting It In Gear!

So, it's been 9 months since Gordon was born, and I finally jumped on a scale the other day at work.  Needless to say, I left with some new motivation to get back in shape.  Especially now that I'm finally done nursing, I have more freedom to work out harder without the fear of getting to dehydrated or anything else that may cause my milk supply to dwindle.  (Too much info?)  

Anyway, I decided the best time to work out was during Gordon's morning nap since the weather is still iffy and I can't always get out for an afternoon run.  I have never done a workout video religiously, although most of my family have done The Firm for more years than I can count, so I decided to find a basic looking 45 minute routine.  Jillian Michaels fit the bill.   It's hilarious, and also really hard.  I'm loving it so far, which is probably the most surprising part, but I have a feeling I'm going to get bored.  I'm looking for another video to mix it up a little.  

I'm really hoping this new routine will help me get ready for my marathon coming up in a few months....ha ha ha.