This is a question that has come to me by email, through the Future of Down’s contact form. It’s a question I have been asked countless times in one way or another and I have always struggled to answer it – not because its a difficult question, but because if I were to ask the flip question to a family who has 3 daughters and none of them have Down’s syndrome, they would find it difficult to answer too. “Normal? Ordinary?” they would say. We all find our own families totally normal and ordinary, and that is no different to me and my family. I have no idea what it would be like to have 3 typically chromosomed daughters. I don’t know any different – my 3 girls are my normal.
I suppose when I get asked the question, there is an assumption that I would answer “it’s hard, she’s a burden, we struggle…” but the reality is that this is simply not the case. We love her the same as our other daughters, we manage our daily lives with no thought at all to Seren having Down’s syndrome and any interventions or therapies she has, she has because she needs them. If either Ava or Violet needed extra help with their development then we would provide it and they don’t have Down’s syndrome.
I have tried and tried and tried to think what it would be like if Seren didn’t have Down’s syndrome – firstly, this is an impossible task because I have to imagine a totally different child. If we took Seren’s Down’s syndrome away, she wouldn’t be Seren after all. So in my head, I have swapped Seren out for another “typical” three and a half year old. All that happens is that I feel empty, and a big chunk of my current life disappears. I lose all the friends I have made through Seren having Down’s syndrome, I lose FoD (in fact, FoD doesn’t exist without Seren), I lose the talks I have been invited to, I lose the knowledge I have gained, I lose the heightened understanding of humility, compassion, patience. I am not the same person I was before Seren was born and I prefer the person I am now.
The thing is, the same happens if I think of swapping Ava or Violet for another child… I can’t bear the thought of it! Despite what anyone else might think of my children, I think they are the most wonderful, amazing, beautiful little creatures. They are mine and I love them totally and unconditionally.
My family is perfect just the way it is. So in answer to the question “what’s it like to have a child with Down’s syndrome” my answer is this: Normal. My life is fulfilled. In equal measure my 3 daughters complete me. Seren having Down’s syndrome does not define her any more than my other daughters are defined by their genetic make-up. I have 3 daughters, that is all.