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Challenge: Kids with Special Needs

What My Daughter’s Diagnosis Taught Me

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It turned out that there would be more to this Battle Call...affectionately known as The Bean. And she was born perfectly petite.

My mom says I shouldn't be surprised. Like the apple that doesn't fall from the tree, she's kept us on our toes from the get. Some might call it spirited. We affectionately call it fierceness.

Even though we only had a lengthy list of boy names, when we found out we were pregnant with a baby girl, we were stoked. Harper Asbury~Would be her name.

Despite our firstborn baby having hearing loss and all that had meant, the idea of having another child, who probably would be born hearing, had us on cloud-9. Mind you; I never studied statistics. 1:4 seemed like good odds to me. I chose to gloss right over it.

Whatever we were dealt, I told (convinced) myself, we could and would deal with. We would wait until her birth and go from there.

Then.

Three days before our baby Battle's cochlear implant surgery, while four months pregnant with the Bean, we got the call. The routine quad screening came back; it suggested a high probability of Downs Syndrome. Naively, we hadn't even worried what the testing was for.

It was routine, after all.

We decided not to wait. Having had one child born with special needs, and dealing with it weeks after his birth (at an extremely vulnerable time), was... um... tough. We wanted to know. Then, we could prepare for what it might mean.

The silver lining. Now, opting for an amniocentesis, we could also get the genetic testing needed to check for the syndrome that caused the hearing loss in our son.

Easy~peasy.

We would have peace of mind that this baby would be born with hearing.

I don't even remember the procedure. I suspect I was too overwhelmed to comprehend it all.

Our unborn child did not have Down Syndrome.

The genetic testing for the other would take longer.

Too distracted even to think twice...did she or didn't she have hearing loss?

Then it came. Driving the hour ride, ironically, returning from auditory verbal therapy with my newly implanted toddler.

"Can you schedule a time to come in for the results," the softly spoken genetics expert asked? I pulled over. Sitting in a parking lot: "JUST. TELL. ME!"

The rest of the conversation is a blur.

An overwhelming feeling of grief washed over me. From the inside~out. How. Could. This. Be. Happening? AGAIN.

I knew what it meant. I couldn't play dumb. The doctor's visits, surgeries, infant hearing aids, worry.

All.of.it.

I couldn't act like a pro nor did I want to pretend to be one. I wasn't the poster child just because of how well versed we were in IT all. We were currently living in the fog and now... we would have to experience it all over. Again.

I immediately began a process of grieving. The loss of the life I had imagined for her. For us.

Big stuff. Sure. But the small...

A kid in the bath or pool or ocean that could hear a splash, the rain, a wave. Little eyes that would track and turn to my voice. Hear my lullaby. A whisper. A bird. The baby I would take out, without stares, curious to figure out why this little-bitty-baby was wearing those huge things on her ears. The sideways looks...

What was wrong with her?

Grief for not being given a chance at mainstream motherhood. The normal way. Like most people I knew.

And then Labor Day came. This little Bean was born. Entering the world with complete gusto. And, we rolled up our sleeves and charged on. Ass down, chin up.

With a little retrospect I was able to be grateful for having that screening which led us to the testing; finding out before any action, other than digestion and marinating, needed to take place.

I was able to let go of what I had imagined, or wished, or longed for.

And accept.

She was designed perfectly, imperfect in a petite little package.

She was our Bean.

Written by Valli Gideons on https://www.facebook.com/MyBat...


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