Having A Child With Down Syndrome: What Nobody Tells You

October is National Down Syndrome Awareness Month. This week’s guest blogger is Michelle, mom to Kayla, 8, and Lucas, 3, and an amazing advocate for kids with special needs.

This is National Down Syndrome Awareness Month. Eight years ago I wouldn’t have known this, nor would I probably have cared. Down syndrome wasn’t part of my life and honestly, I just never heard much of anything about it. My only point of reference to Down syndrome was from when I was younger and watched that TV series Life Goes On which featured Corky, who had Down syndrome. Sometimes I would notice someone and think to myself that they had the tell-tale facial features that indicated Down syndrome, but I don’t recall ever having any interactions, or communication, with anyone with Down syndrome

Then I became pregnant. I started reading pregnancy magazines which led me to articles and discussion about prenatal testing. I remember thinking I wouldn’t end my pregnancy for Down syndrome, I could handle that diagnosis – although not ever believing that I would really get such a diagnosis. That sort of thing happens to other people, right? Besides, I was 29, doesn’t it happen to older women?

When Kayla was born and they placed her on my lap and I took that first look at her eyes, I just knew she had Down syndrome. Even though I could tell by looking at my baby that she had Down syndrome, I really didn’t know what that meant. I didn’t know what that meant for her, for us as her parents, for her future, or how we were supposed to raise her. I didn’t know what to think. My mind went blank as the doctor talked to us about the characteristics she had that indicated Down syndrome. When I called my dad to tell him the news he responded with, “So? What does that mean?” I didn’t have an answer for him. I mumbled something about it was like “Corky, you know, from the tv show Life Goes On that we used to watch.”

Since this post was originally written for Parents.com I can only permit The Survival Guide for Rookie Moms to reprint this short excerpt. Please do head over to Parents.com to read the rest of my post.


Married to a guy I met in high school in Germany; although not high school sweethearts! Raising 2 kids – Kayla, who has Trisomy 21, aka Down syndrome, and Celiac disease, and Lucas who thinks he should get everything he wants and is fiercely independent! I’m a SAHM and a Discovery Toys consultant. My husband is in the Air Force. We just survived the the one-year deployment to Afghanistan gig. Follow along at Big Blueberry Eyes

One Response

  1. After seeing your guest blogger Michelle, on Having a Child with Downs Sydrome I wanted to introduce you to a resource called Tyze I think you both might find really interesting. Tyze is an amazing tool for parents and caregivers (i.e. Parents caring for a special needs child). Tyze offers private, personal online networks designed to support caregivers- it helps people do practical things like keep track of medications, schedule appointments and plan events on a shared calendar, all within the context of a personalized online network where people share stories and photos.

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