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1.16.2009

Was your child diagnosed with a hearing loss?

When Alexander was given the diagnosis of a severe to profound hearing loss I was at a loss for words to express my sadness.
I didn't know what resources were out there,
what the heck were cochlear implants
and how would they help Alexander?
Could he be saved from his noiseless world?


A close friend referred me to a blog she had come across.

I read it.
With emotions bubbling over I cried as I read and watched videos of a little boy miraculously being implanted and activated receiving noise for the first time ever.


What would that be like?
Is an implant in my child's future?
Would he find success with an implant also?
Are some of the questions I asked myself.

I left a message on her blog. It was more of a cry for help.
"Tell me what it is like to be where you are now? Will I ever be able to climb out of this deep, dark hole that I am emotionally stuck in holding my child who can not hear my cries?"

Her reply is what carried me to where I am now.

When matters seemed to be complicated enough my brother's child was diagnosed with a hearing loss with a cause not associated to my own son's hearing loss.

Of course I cried for him. There will be many challenges ahead, but just like any marathon, it is a long, hard run, but always so rewarding when you cross the finish line.

Here is a letter I sent him and would like to share it with you:

Finding out your child is hard of hearing is a very difficult challenge to come to terms with. When Alexander was diagnosed just the knowledge of knowing that something was wrong with my baby that I couldn't change was my most difficult dispute.


ASK questions and get your answers so you feel like you have a road map planned out for you and your child. Then get on the road and start running one step at a time.


It can only get better from here.

I have thought if I had the choice, would I go back and take away Alexander's deafness? Initially I thought yes, of course, I want him to have all that I have. After the thoughts stirred inside of me I surprisingly thought, “No.” A lot of what makes Alexander unique, enjoyable and adorable is his deafness.

He has made our family stronger.

We have met people we would have never met and educated ourselves in ways we wouldn’t have otherwise done.

I am a wiser, better mom because I have a son with a disability.

It’s a process, but you will soon come to embrace what makes your child unique and see it as a blessing in a lot of ways.


Have you read the poem, “The Beauty of Holland”? It is wonderful and will have you in tears. Honestly, I read it a long time ago in college and it did not mean much. Then I read it again after Alexander’s diagnosis and hated it because I did not want to be in Holland. (I am stubborn).


Now I have found the beauty of Holland and I would not want to go anywhere else.

The Beauty of Holland

"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 trip--to Italy! You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You even 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 flight attendant 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 has 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 learn a whole new language. And you will meet a whole new group of people you never would 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. Holland has tulips. Holland even has Rembrandt's.

"But everyone you know is busy coming and going from Italy, and they're all talking 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.'

"But if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland"

--Emily Perl Kingsley



As you begin your marathon the only training required is to be a loving, kind and patient parent who is willing to teach, embrace and fight for what you know your child needs to succeed. Innately we all have a little of that in us.

Be sure to keep family and friends informed about the choices you're making so they can support you every step of the way, especially when you're thirsty and need to stop at a water station, they can help you run the next mile.


Hopefully this will help you find some comfort.

Your Friend,

3 comments:

Lucas'Mommy said...

Great post and beautiful letter to your brother. I too found a blog that opened a whole new world for me. And "Holland" has brought me to tears many times. I'm not sure I'm in Italy yet though... maybe I'm stuck in Switzerland?

susannah said...

this is a great post. brought tears to my eyes. it completely resonates with me..

Hunter's Mommy said...

Thank you for posting this, I just cannot thank you enough!