Grieving the loss of a hearing child

Just to bring you back to the day we found out Sienna was deaf...

For months we were told that she may have a minor hearing loss as she was very vocal and had also passed her newborn screening test. So after many consultations, we finally had an ABR scheduled, an auditory brain response test where the child is sedated in order to test their brain's response to all levels of sound.

There we were waiting in the recovery room, our ENT entered. She went on and on about hearing loss and that Sienna had a profound hearing loss. She said they stimulated her with sound as loud as they could and there was no response. Kevin and I were sitting there, confused so I had to ask, I just had to..."Is Sienna deaf?" I said it, I said the "D" word, and the ENT responded with "yes." Our world came to an end, we were speechless. This news came on December 19th, 08, just before Christmas. Our Christmas last year was spent grieving, we traveled through all the grieving emotions, one by one. This did not happen overnight, it took a while to deal it. I watched an Oprah episode shortly after and one man who lost his twin brother described it like this...

You have a beautiful picture on the wall of what you imagined your life to be,

For us it was a healthy, "normal" family...

Then one day, something happens

They tell us Sienna's deaf...

You then take that beautiful picture from your wall

You smash it into a million pieces

Grief overcomes your mind, body and soul

And slowly as you accept your new life,

As you journey through the pain

You begin painting a new picture.

We have painted that picture, Mom, Dad, Rylee and Sienna, our beautiful family. Sometimes, I catch myself going through the grieving emotions all over again, so I read the poem below.

I came across this poem on one of my CI mom's blog, Tammy about her son Aiden. She is a truly amazing mother. Aiden is very blessed to have a mother who loves him, who will do everything and anything to make his world a better place. I learn alot from her.

This poem is about what happens when a parent finds out there child has a diability. It is so hard to help people understand the feelings a parent goes through. When first told, every parent goes through a grieving process, we are grieving the loss of a "normal" child. With grieving comes denial, anger, deep yearning, despair and finally acceptance.

Welcome to Holland
by Emily Perl Kingsley
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.

Sienna's history

It has been a long haul for the StJean family. Born August 28th, 2007, a month premature, Sienna spent 2.5 weeks in the NICU. In the following weeks, she passed the newborn hearing sreening test. Up until 6 months old, we had no concerns. Then we noticed weak muscle tone and she fell off her growing chart, born in the 10-25 percentile she descended into below the 3rd percentile. We soon began seeing an early childhood interventionist.

From June 2008 until December 2008, Sienna was under investigation, why are these things happening to our little girl? In the summer of 2008, we started noticing her hearing loss. The first wakeup moment was when I returned from grocery shopping, I called her name and she did not respond. She is a mommy's girl, I knew if she had heard my voice, she would have turned without hesitation. By the time we were referred to an audiologist, an ENT, a test was done, an ABR was done... we finally were told on December 19th, 2008, the life-altering news, our little girl is deaf in both ears. Thankfully, impressions were taken on that following Monday. She was fitted with pink hearing aids on January 14th, 2009 when she began to hear.

The Glenrose Rehabilitation Hospital in Edmonton Alberta has played an instrumental part in taking care of our family. We began our visits in December 2008, over the Christmas holidays, someone from the hospital called us everyday, to see how we were doing. After extensive report analyzing, our Pediatrician at the Glenrose suspected Congenital Cytomegalovirus as the culprit for Sienna's health concerns. Just last week I received a call, they did a never before done, high-tech procedure, they checked her newborn blood spot for CMV. It came back positive. It's a relief to know that we finally have found the reason however CMV is a very complicated virus. If you would like more information about the virus, please click on the link to the Centre for Disease Control and Prevention.

Our journey has just begun. At 19 months, we know why, now we need to focus on having our little girl walk and of course having her hear with her two little ears she was born with.