Richard Brown is a Trustee for Ataxia UK and was diagnosed with Friedreich’s Ataxia in 1991 when he was 14. It had a devastating impact on what things he thought he could do in life. However, five years later Richard met his wife Helen and, with her help, began to turn his life around. Richard takes us through his thought process in becoming a parent with ataxia.
My awkward and painful diagnosis was followed by very grim and highly medical prognosis. This shattering news was accompanied by paralysing fear, anger and deep denial and depression. I turned inwards and grieved for all the things I thought I would never do, things that are valued in our society: getting married, going to university, having a career, a family, driving a car, owning a home. I was so angry at everyone. My parents felt helpless and were wracked with guilt. My life had stopped, ended right there. I spiralled into grief. It was a very difficult time for me.
Still struggling to come to terms with my ataxia, I met my future wife five years later. A teenager herself, Helen had a great desire to succeed and importantly, saw no reason why I couldn’t too. As my mobility worsened, she saw something in me I could not. With Helen’s encouragement and support, I began studying History with the Open University. By the summer of 2002 I had got married, graduated, started my first job and moved into our first home: the four most stressful things you can ever do, and all the things I thought I never would.
My wife and I had always wanted to have children together, we’d just never agreed exactly when. Before we were married, we had tests to make sure that Helen did not carry the defective FA gene. The results confirmed that any children we would have would be at no greater risk than those of any other couple. We now had to make a massive decision together – should we really start a family?
There were so many things to consider. In life, we play the percentages, we assess the risks, look at what we can control and try to make our decisions accordingly. For someone with a disability, those percentages change considerably. Human beings are weak; we sometimes rely on our intuition and don’t always make logical decisions. But there are no guarantees, none of us know what might happen to any of us. There were dark thoughts too. I felt sad that I would probably not know my children as adults. I feared they might become child-carers, missing out on their own childhood to care for an ailing parent. I even wondered what kind of future they would have in this terrible world. But some things I knew: I knew I would not want my parents to deny me a chance of life if they had had that choice before I was born. I knew from living with ataxia that we must live for the moment and that fear should not stop you, but be seized as an opportunity to do great things.
Isabella was born in 2009. Becoming a parent changes everything. There is a whole new world of responsibilities and feelings. As with all new parents, I had to face up to my own mortality; a new child is a painful reminder that the wheel of life has turned and that we are not children ourselves any more. There are sacrifices, grey hair and a lot of hard work, but such amazing and wonderful things happen when you’re a parent. There are the birthdays, the first words, the first steps, the first day of school, the nativities, the sports days, Christmases… Children are a pure light that shine on you, everything and everyone else. Soon after she started school, and family life finally started to get a little easier, our Son, William was born.
My amazing wife plays a very important role in our family. She provides the physical care for all of us and is a super mum. It is important to me to do what I can to set a good example, so I help cook the evening meal, look after our finances and help with bath and bedtimes. When they were babies, I spent some mornings or afternoons with them strapped to me. I fed them and even attempted the rare one-handed nappy change. On outings nowadays, I double as a pram or pushchair. One thing I didn’t realise, although they recognise you, children don’t start making memories until about four; all those sleepless nights, expensive family holidays all those bed-time stories – they won’t remember them! Spare a thought for your own parents, and take lots of pictures!
Bella is eight and Billy is three, and we aren’t planning on having any more kids. Being a dad is the best thing I’ve ever done; our children make me proud every day and it is a privilege for me to know them. I stand by the choice we made to bring them into this world. I hope they will look back when they’re older and say it was a good one.
Having being with me for more than 25 years now, ataxia feels more like an old adversary. Thankfully, there is much better information and support for people when they are diagnosed today. On bad days, I still feel angry, but I have had to accept that ataxia is part of me and has had a fundamental impact on my life. It has helped me find the strength I need to carry on fighting to follow my dreams. It has taught me that only we determine the quality of our lives; and the things that I never thought I’d have? I have them all.