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My Son Is Not Brave Just Because He Has Down Syndrome

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We had a “first” this morning, a comment from a customer at out store that took me slightly aback.

I haven’t had many comments regarding Down syndrome, other than a few “you can’t even tell” in the beginning. I usually get comments about how cute my children are, how happy they seem, how well behaved they are and the fact they have lovely natures. Is there a bigger compliment than someone saying you have lovely children? I’ve never had a bad exchange, and I’ve definitely never had anyone be purposely mean or disrespectful. Hopefully I never will, but who knows.

Me and my husband, Reagan, were talking and I mentioned I didn’t think that people really watched us. I mean, I never really see anyone staring at us. His said he sees people watching us all the time and that I’m just oblivious to it. He told me he often sees people watching me with the boys, in particular, River. I had no idea! He also said he feels proud when he sees me wrapped up in our own little life and not noticing that people seem to be drawn to it. Probably one of the best compliments he could have given me because it’s exactly what I want to teach my boys, to concentrate on living their lives and being happy.

We smile at people and say “hi,” we are friendly and I often start conversations because River is determined to high-five random strangers. I certainly don’t have a guard up or worry that people notice River has Down syndrome. I couldn’t care less about that, I actually hope they do and see what a great life he has along with it. I hope they see Down syndrome isn’t limiting him and it isn’t “the end of the world.” Far from it! It never really crosses my mind when we are going about our everyday lives that people notice River is “different,” and I guess that’s because I don’t see or think about him as “different.” Our life is our “normal,” it may be unique to other people but to us it’s “normal.”

My husband also said he has never seen anyone look at us in a negative or disrespectful way, it’s always in a curious way. That is completely fine with me and is actually exactly what I want. If anyone is learning something from looking at us, then look as much as you want. Society needs to see families like mine getting on with living our lives, they need to see we are a “normal” (there’s that word again) family, living a “normal” life. Especially here in Tanzania where so many children with disabilities are hidden away in shame. Our friend, Abuchu, spent 30 years of his life locked in a tiny dark room, never leaving it just because he has Down syndrome and his parents were ashamed. I want to show families here that their children can live great lives and they deserve to be given that opportunity. It breaks my heart to think that some parents believe they have been cursed or are being punished by God; that they see their own children as a “vengeance.” Neither of my kids is a “punishment,” River and Skyler are the best things to ever happen to me!

So this morning’s comment wasn’t a bad comment, the lady who said it was lovely and meant no offense at all. I’m sure she would have been horrified if she thought she’d said anything to make me feel uncomfortable.

We were in our store and she came in to buy some gifts. She noticed River, and after he forced her into a game of rolling the car back and forth we got talking. Everyday things, the weather, her trip, how long I’ve lived here, etc. As she was leaving, she held River’s face, kissed him on the cheek and said, “you are such a brave little boy.” It hit me like a brick and made me feel instantly uneasy. It communicated she felt sorry for him and our circumstance, and pity is the one thing I don’t deal with very well at all. So in true British fashion I inserted a bit of humor and told her we luckily hadn’t had to test his bravery yet, as the biggest health complication he’d had was a severe case of constipation.

Looking back though, making light of it made her comfortable enough to ask me questions about Down syndrome and what it means for our family and for River. I love the fact that she left with a bigger understanding and a whole new opinion, and she understands now that our children are not suffering because they have Down syndrome. Our exchange actually reinforced everything I already believe, that most people who may say the wrong things have no idea they are saying something that you find offensive; they mean no harm. Most people have good intentions and I don’t believe we help anyone by being on the “defensive” all the time. I don’t believe we help our children by building barriers around ourselves.

I’m not saying that no children with Down syndrome are brave. There are children who have heart conditions, leukemia and other life-threatening conditions and they are incredibly brave every single day. Some of the bravest people I know have Down syndrome. There are also families who are incredibly brave and inspiring, and I hope my own braveness is never tested in the same way.

Having Down syndrome does not make my son brave. He’s feisty, fearless and determined, but right now his braveness is limited to climbing as high as he can, catapulting himself over the back of the sofa and quickly swiping his brother’s last bit of cake and shoving it in his mouth! He’s not in any way suffering and has a very happy and blessed life. I do, however, hope he grows up to be a brave man. Just as I hope his brother, Skyler, will grow up to be a brave man. I hope they are brave enough to fight for what they believe. I hope they are brave enough to choose love and kindness, and not hatred and anger. I hope they are brave enough to take risks. I hope they are brave enough to follow their dreams, and in River’s case even if society doubts him. I hope they are brave enough to turn their backs on the division in this world and any negativity.

I hope that River is brave enough to prove the world wrong.

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Originally published: June 29, 2017
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