I have to let him live his own life, let him make his own choices and hope that my influence as a dad has helped him make the right life choices.
Mark and Dan
Being Dan’s Dad… By Mark Jones (UK, dad of 2, advocate)
Mark Jones and his family live in Gloucestershire, UK. He tells us a little bit about what it’s been like to be Dan’s dad so far.
I
honestly had very limited knowledge of people with Down syndrome before Dan came into our world. I have a vague memory of a neighbour with Down syndrome when I was very young, and my parents spoke very fondly of her. That’s about it! Fast forward twenty years. I turned thirty years old five days after Dan was born, and my wife Karena was twenty-three. We married in 2001, and Dan was born around a year later. We were stunned by the postnatal diagnosis. However, I think it had a lot to do with how the news was delivered, and in our case, it was broken very sombrely and made us feel very sad. We were sat down and handed a Polaroid photograph of Dan in the Special Care Baby Unit. We thought the worst; we thought we’d lost him. We were then told the “sad news” that Dan had Down syndrome. We had no idea until that very moment. We had no prenatal testing; this is something we hadn’t considered at all. If we had, I’d like to think we would have had the right information and support to make the decision to go
ahead with the pregnancy. Honest and balanced advice at the point of diagnosis is extremely important. It so happened that Down syndrome was not the only diagnosis. Daniel had a severe bowel problem that needed emergency surgery, and we naturally prioritised that. In a way, the worry of the surgery put it all into perspective for us. My instant concerns at the beginning were: Would we be able to give him the best life? Would he be able to make his own choices? Would he have friends? All of these worries faded pretty quickly. He loves discos, his local football team, and he definitely has more friends than I do! I had an early selfish vision of what a father–son relationship should look like when Dan was born. I pictured him playing football, watching Star Wars with me, liking my taste in music. The truth is, Dan has more than embraced his own likes and interests. I have definitely gone from wanting my child to like the things I like to fiercely wanting him to do whatever makes him happy and for him to make his own
I am his voice, and I will continue to be his voice until he finds his own.
12
makingchromosomescount.co.uk
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