My son is not brave, he has Down syndrome

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We had a bit of a first this morning, a comment from the member of the public that took me slightly a back. I’ve never actually had many comments regarding Down syndrome, other than a few ‘you can’t even tell’ moments in the beginning it’s rarely mentioned. I always 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 though, and I’ve definitely never had anyone be purposely mean or disrespectful. Hopefully I never will, but who knows.

Living in my own little bubble

Me and Reagan were talking earlier, after this, and I mentioned that I didn’t think that people really watched us. I mean I never really see anyone staring at us. His response was that he sees people watching us all the time and that I’m just oblivious to it. He told me that he often see’s people watching me with the boys, in particular River. I had no idea! He also said that 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 that 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, other than what people on the outside may be concerned with.

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We always smile at people and say hi, we are always friendly and I’m always starting conversations because River is determined to high 5 random strangers. I certainly don’t have a guard up or worry that people are noticing 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 that it isn’t limiting him or and 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 are noticing the fact that 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 just normal.

My husband did add mind, that he has never seen anyone look at us in a negative or disrespectful way, he said 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 that we are just 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. Look at our friend Abuchu who 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 – ‘Living with Ds in Tanzania’. I want to show families here that their children can live great lives and that they deserve to be given that opportunity. It breaks my hearts 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. To be honest, if River is my punishment then it’s a pretty poor one, him and Skyler are the best things to ever happen to me!

Not sure why, but it hit me like a brick

Back to the comment anyway, as usual I’ve got sidetracked. It wasn’t even a bad comment, the lady who said it was actually lovely and meant no offence at all. I’m sure she would have been horrified if she thought she’d said anything to make me feel uncomfortable. And actually, I’m not even sure why this particular comment made me feel as uncomfortable as it did, but the fact is it did. We were in our store and a customer cane 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. Just normal everyday things, the weather, her trip, how long I’ve lived here, etc. Well as she was leaving, she held Rivers face, kissed him on the cheek and said “you are such a brave little boy”. You may not even think that’s anything to be bothered by, but it hit me like a brick and made me feel instantly uneasy. It made me realize that she felt sorry for him and our circumstance, and pity is the one thing that I don’t deal with very well at all. So in true British fashion I inserted a bit of humor and told her that 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 happen to have Down syndrome. Our exchange actually reinforced everything I wrote about in my article ‘Don’t retaliate, Educate’, and I still believe every word. Most people have good intentions and we are not helping anyone by being on the defensive all the time. We are not helping our children by building barriers around ourselves.

Now don’t get me wrong, I’m not saying that no children with Down syndrome are brave. There are children who are fighting heart conditions, leaukemia and many other life threatening conditions and they are incredibly brave every single day. Some of the bravest people I know happen to have Downs syndrome, it doesn’t get braver than fighting for life through whatever is thrown at you. There are also families that are incredibly brave and inspiring, and I hope my own braveness is never tested in the same way.

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I hope that River becomes a brave man

Having Downs syndrome does not make my son brave. He’s feisty, fearless and determined yes, 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 brothers 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. Two year old should not have to be brave, they shoud not need to be brave. 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 though 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.

Bridie By The Sea
Spectrum Sunday

10 thoughts on “My son is not brave, he has Down syndrome

  1. Rhyming with Wine says:

    Oh my goodness it breaks my heart to read about your friend Abuchu. I would like to think that society has come a long way, but there is clearly such a need for positive education and helping people to better understand each other’s lives. Your post is excellent, and your children are beautiful. Thank you for sharing with #DreamTeam. x

    Like

    • Hayley - I am River says:

      It’s so sad isn’t it! He’s doing great though, he is such a character. He’s actually a bit of a party animal now haha. Society definitely has come a long way, compared to what the world used to be like for people with Down syndrome it’s a fantastic time to be born. So many more opportunities and the chance to live a fulfilling life. But such a long way to go and I’m sure it can be achieved. Thanks so much for the lovely comment x x x

      Like

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