Hand to Hold's Official Blog: Written by Parents for Parents

Educating Yourself on a Down Syndrome Diagnosis

newborn with Down syndrome Look, it’s true. I’m not going to lie to you. My life was never the same after I received a Down syndrome diagnosis for my unborn son five years ago.

In the beginning, I thought that was a horrible, terrible, devastating thing.

Then parental instincts kicked in, I read things I might have glossed over before and slowly I became more educated. I also fell in love with my preemie and his always-moving legs and downy soft shock of blonde hair.

For me, along with education came a heightened sense of vulnerability and a deep-rooted sense of advocacy. I not only became my son’s number one protector (sorry, Husband, but the line forms here), I immediately became a vocal advocate for all people with disabilities.

And I figured out that all along, that role was exactly what my life had been leading up to. This is what I’m supposed to do.

Please understand, I’m not judgmental of those who choose a different path. In fact, I support a woman’s right to choose what she does with her body.

But my one request of any woman facing a prenatal or at-birth diagnosis is the same: If you are considering termination or adoption, please educate yourself before making any decisions.

letter case down syndrome awarenessTo best understand what a prenatal or at-birth diagnosis of Down syndrome means, I recommend digging into the facts and then giving yourself a chance to consider others’ anecdotal experiences, all pressed against the foundation of your own personal beliefs, your own experiences.

Lettercase materials provide information even the medical community endorses. The material is updated, factual and unbiased. Readers won’t get a sermon about the value of life but rather a full explanation of options: adoption, termination or putting one step in front of the other as a parent.

Some Down syndrome organizations have trained parents as part of a “First Call” program, so if a local family receives a Down syndrome diagnosis, they can reach out and talk with someone who has a loved one with Down syndrome who isn’t going to pretend a child with an extra chromosome has a halo tucked beneath that shock of hair. But I understand when women don’t want to talk with someone else. I didn’t.

siblings, down syndromeJust know that the truth about parenting a child with Down syndrome is the truth about parenting in general: it’s a steady dose of love and effort, punctuated by moments or periods of difficulty and challenges that, in one fell swoop, can be painted over entirely by intense, overwhelming moments of pride and love and celebration.

And then the child pokes his classmate in the eye and you’re back to square one.

Tonight, as I held my son’s arm back from striking me yet again today, I chuckled and knew I would describe the moment in this article. Why? Because I’m talking about my third child, Liam, my “typically developing” son, whose arm I was holding back to avoid being hit again.

My son with an extra chromosome, Charlie, has never struck me; he’d rather cuddle when he gets upset.  But Liam is a ball of volatile emotion who will unquestionably be the child standing in the doorway of preschool screaming, “DON’T LEAVE ME, MOMMY!!”

Or maybe he won’t.

Because that’s the other thing about parenthood I’ve learned in these chaotic five years: these kids are likely to shock the heck out of me every time.

 

maureen rich wallaceAbout Maureen:
Maureen Rich Wallace is a writer, editor, and PR and marketing consultant. All three of her children are exceptional, and the oldest came with a free extra chromosome. She advocates for inclusion in education, Down syndrome cognition research and the Boston Red Sox.

 

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