Down’s Syndrome Reality

Billy and my handsMany people write and talk about Down’s syndrome in many different styles, from a wide range of angles raising awareness of why it happens, what are the myths and so on. We as a family will never forget the consequence of Down’s syndrome. It affected us so many ways. Our two-year-old points at the cemetery and calls her brother’s name, her brother that she never met. October is a hard month as it whispers into our hearts that Billy’s birthday is next month. Other parents prepare birthday presents and cakes and we are silently crying, looking at children around Billy’s age coming out of nursery gates and feeling the heavy emptiness in our hearts.

I remember walking down the street with Billy, super-sensitive and ready to spot anyone’s glance and preparing myself to hear nasty comments. Perhaps now I might be offending parents and carers who are with their babies, with their teens by staring at them, trying to picture what it would have been like with Billy. Our family might look ‘normal’ from the outside walking down the street, but Billy is missing. What I’m trying to say is that we never know other people’s stories.

I don’t know what Billy’s first smile would have been like, I will never know. I had a glimpse of his smile while he was sleeping on a hospital bed. That was the only smile I was to see. So yes, be aware that there are many parents, relatives, grandparents, sisters and brothers out there remembering their loved ones because Down’s syndrome changed them, hurt them and made impacts in their lives.

3 thoughts on “Down’s Syndrome Reality

  1. Penny Green

    So true my friend and it never changes. My Daniel would have been 24 now and still I wonder what he would have been like. My other three wanted to get me a photo done of them all together for Mothers Day and I love the idea, but part of me cannot help thinking that it will be missing something. Should we have a photo of Daniel superimposed at the top so it can be of ALL my children together? But then how will that be right as he should be the second oldest not the only one that is a baby as he never grew up for me to have those older shots.

    I do not regret having him for one moment and really it’s not the Down’s Syndrome that is the issue, it’s the medical problems that can go along with it like the heart issues that took Billy and Daniel from us and left us with just the memories and thoughts of how things might have been.

    Reply
    1. Uuganaa Post author

      Yes, it did occur to me too that Billy’s photo will be always his baby photo. Last year our oldest did portraits of her siblings and herself and gave us as a Christmas present. We love it. Perhaps it was easier to accept as the portraits were done from photos of them individually.

      I agree with you that it’s the medical complications that come with Down’s syndrome and the label and prejudice come with it too.

      You are doing a great work helping many families around the world and I’m sure Daniel is watching and feeling proud. X

      Reply
  2. Olga Bikitsha

    So sad to hear about Billy and yes it is very sad that they label our kids as mongols. My son Viwe is 4 now and we live in South Africa,Durban where there is absolutely no support from the Association. I cannot get him to a preschool as he will trouble other kids. He is just a child like any other, I say what harm can he do? But I guess that is a challenge that I will have to live with

    Reply

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