Nobody Told Me

(This post was originally published in 2011 on the Parents.com blog for Down Syndrome Awareness Month.)

October is National Down Syndrome Awareness Month. 8 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 'reference' to Down syndrome was from when I was much younger and watched "Life Goes On." 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."

I learned that Down syndrome was caused by an extra chromosome on the 21st pair. I learned it happens at conception, a little extra material doesn't split right and there ends up being 3 copies of the 21st chromosome (which is known in medical terms as Trisomy 21, or T21). I learned there is nothing I, or my husband, (about 5% of the time it comes from the father) did to make it happen. I learned there is nothing to prevent it from happening. I learned it is not related to race, religion, nationality, or socio-economic status. I learned about all the potential medical problems that we might have to deal with as a result of this diagnosis. I learned that developmental milestones will take longer to reach. Everything I read seemed to be negative.

No one told me I was going to take my baby home and love her and raise her and do everything I would have done had she not been born with Down syndrome. No one told me the Brushfield spots in her eyes would make them sparkle and shine and people would comment on her eyes all the time. No one told me she would act like, and do, all the things other babies did. No one told me how pleasant and easy-going she was going to be.

No one told me she would continue to amaze me and I would underestimate what she could do or think or say or learn. No one told me she would go to school and make friends. No one told me how quickly it seemed everyone in the school knew her name and who she was. No one told me what an integral part of our family she would be. No one told me people with Down syndrome are valued members of society.

No one told me how infectious her giggle is, or how much she enjoys playing dress-up. No one told me how much she would enjoy riding the school bus, or how much fun she would have in a body of water. No one told me I would fall more and more in love with this child of mine the more I got to know her.

Down syndrome is not a death sentence. It is not something to pity. It doesn't mean they should be discriminated against. It is not a burden. It is not unhealthy. It is not bad. Down syndrome is different, but different doesn't mean bad, it's just different. Down syndrome is just an extra chromosome.

Down syndrome is not some foreign race of individuals that can't be identified with; Down syndrome is part of the human race. People with Down syndrome have wants, needs, feelings, hopes, dreams, desires, and goals just like any other person. They are more alike their peers than people realize. People with Down syndrome are included in school and can graduate, hold jobs, go to college, live on their own, and get married. There are individuals with Down syndrome who are self-confident and articulate self-advocates.

I hope that National Down Syndrome Awareness month continues to grow and get more publicity. I hope that people who have no connection to Down syndrome will become more aware of what it is and what it isn't. I hope that people will realize they are people too and just as deserving of courtesy and respect. So the next time you come across a child, teenager, or adult with Down syndrome you won't avert your eyes and pretend you didn't see them. Instead, make eye contact, smile, and say hi. I bet you'll be greeted with a big smile and hello back.

Original post:
My 31 for 21 post today is over on the Parents.com blog. The lovely Ellen from Love That Max also writes a blog, To The Max, for Parents.com and asked if I would submit a post for Down Syndrome Awareness Month.

Head on over to see what I had to say on Having A Child With Down Syndrome: What Nobody Tells You. (Link no longer valid).

Ps ... while you're over there, just a reminder that my blog is also nominated in the category for Special Needs Blog, appreciate any votes!


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