Tag Archive | special needs children

Reality Check

Back Camera

The soothing aroma of cinnamon rises from my glass tea cup as I look outside. It’s mid-morning on a sunny Florida day. A few wispy clouds linger on the bright blue horizon as a soft breeze touches the tree limbs in a sweet caress.  The coffee shop offers a cold taupe granite countertop which holds my laptop.

As I string words together for my memoir, I enjoy soft piano music playing in my ear. Over the soft melody, I hear a baby babbling in a stroller behind me. I smile. I attempt to focus on the computer screen. The baby continues to coo. Then I realize, Samuel makes these same sounds.

I turn around see two ladies sitting at the table with a stroller to the side. A woman with blonde hair holds the baby in her arms.

“How old is your baby?”

The other woman answers, “She’s eighteen months.”

“She making sounds like my son.”

“Oh, how old is your son?”

I hesitate to answer. In the many times I have been asked this question, I face the same dilemma. My son doesn’t look like his age. In this case, how do I explain an eight year old who is still in the cooing stage. Sometimes, I’m tempted to say he is 8. Perhaps they’ll think he’s 8 months, not 8 years old.

“My son is eight years old. He has a rare form of dwarfism called Thanatophoric Dysplasia.”

The woman holding the baby chimes in. “Oh, how interesting.”

I smile. “He’s eighteen pounds and twenty-four inches long.”

The mother looks at her daughter. “That’s how much Brianna weighs.”

I look at her daughter who’s legs and arms are much longer than Samuel. Mental note: my son is smaller than an eighteen month old. I don’t dwell on Samuel’s size in comparison to other children but it’s in moments like these I can’t escape the fact.

We chat for a few more moments and then say our goodbye’s. The café is quiet now with only a few people left enjoying a solitary cup of brew. I pack my laptop, sling my purse strap over my shoulder and walk to my car. It’s not until later when I reflect on the encounter noting my journey is a unique one. Though different, I understand my son is just another version of normal. What my husband calls “God’s Alternate Construction.”

 

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Wrongful Birth Suits

I heard about wrongful birth for the first time several years ago in a case in Tampa where the parents sued their genetic councelor.

http://www.lifenews.com/2007/07/31/state-2387/

Today, I read about another Wrongful Birth Suit. The couple are suing because the genetic counselor did not tell them that there was a possibility that their child could have downs syndrome. See story below.

http://www.lifenews.com/2012/03/06/couple-sues-doc-didnt-suggest-aborting-down-syndrome-baby/

We met with a genetic counselor when I was pregnant with Samuel. He was clear that our son may have a lethal form of dwarfism. In the end, it turned out he was right. But God. (One of my favorite two word sentences!) But God had other plans for our son who is now six-years-old.

Would Samuel be healthy if our genetic counselor was wrong? Our life would be different if that were the case. As it is, I am a special needs mom who delights in the joys of raising our precious son. I understand that these parents are suing for monies that would help them to pay for raising their special needs child. We were blessed to have outstanding health insurance at the time of Samuel’s birth. While I do not agree that a lawsuit is the right answer, what is?   How do we come along side families who have special needs children? One possibility is a ministry where members share the cost of each others healthcare. Mike Huckabee spoke to the executive director of Christian Health Ministries to explain how the program works.

http://www.youtube.com/watch?v=OYTaVcayLQg&noredirect=1

Could this help families who have special needs children? What are your thoughts?