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Why I No Longer Engage the People Who Think My Son's Life Doesn't Have Value

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In the past three years, I’ve learned many things about myself, my family and the world we live in.

I’ve learned there’s nothing more important to me than the health and happiness of my children.

I’ve learned what it feels like to hand your 7-week-old over to a surgeon and spend the next six hours begging any God listening to bring him back to you.

I’ve learned there’s beauty in celebrating every single milestone and every new skill acquired.

I’ve learned that my family is truly the sum of its parts.

I’ve learned there’s an ugliness in the world we live in when it comes to people’s perception and acceptance of people with disabilities.

I’ve learned to ignore this ugliness (Well, I’m learning to).

We found out our fourth (and final) child would be born with Down syndrome during my 20th week of pregnancy. We also learned he would be born with several congenital heart defects that would require open heart surgery at a young age.

We learned we’d be adding a son to our family full of daughters. Our initial reaction to this news was marred with fear and uncertainty. We were unsure of what type of future our son would have and how it would affect our other children.

In retrospect, I realize I was mostly afraid of never having the opportunity to hold our little guy and to welcome him into the world. I wanted the chance to help him find his place in the world we live in. I was worried about how the world would treat him.

We’ve been welcomed with open arms into the Down syndrome community, a community as vast in its uniqueness as any other. I have friends, virtual and otherwise, from all around the world. We all share the same mission and the same voice. We strive for acceptance of our loved ones. We may differ in the route we choose to create to ensure this acceptance, but that one word — acceptance — is really at the center of what we spend our lives working towards.

Personally, I want my son and everyone with a disability to be accepted based solely on who they are. Unfortunately, I find myself and others constantly saying things like, “People with Down syndrome graduate from high school, attend college, live independently, get married, drive cars, etc.” in response to people who comment on article after article that my son would be better off dead (this has actually been said) because he will never contribute to society or will suffer and be a burden to his sisters.

People say it’s “immoral” to carry children with Down syndrome to term if given a prenatal diagnosis. I’ve realized there’s no convincing those people my son’s life has value. They don’t actually see him or people with disabilities; they only see the disability. They also only see disability through their own eyes, how they think they would feel if they had a child with a disability or if they had a disability themselves. So, I’m going to stop trying.

I will, however, continue to talk about my son and the joy he brings to our family and those around us. Not because he has Down syndrome, but because he’s Carter. I don’t have to prove anything to anyone and neither does he.


Originally published: March 26, 2015
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