This weekend marks the anniversary of a very sad event in my family’s history and one of the inspirations behind my year without beer. In March 2003, my cousin’s son Adam was just 18 years old when he lost his lifelong battle with Cystic Fibrosis.
Despite Cystic Fibrosis being the UK’s most common life-threatening inherited disease it is still something many people seem to know very little about. To give a bit of insight I thought I would share an article from the Disability Dads series on the BBC’s Ouch! Blog.
In 2012 I was raising money for the Cystic Fibrosis Trust.
At 41, Tim Wotton has reached the median age of survival for a person with cystic fibrosis and intends to carry on keeping healthy for his now five year old son.
“Daddy better,” my little boy said as he patted my chest following one of my cataclysmic coughs. Little did he know that, rather than help my lungs, he’d slightly broken my heart.
At birth I was diagnosed with the life-threatening illness cystic fibrosis (CF) and not expected to live much past my teens. It clogs up my lungs and digestive system with a thick sticky mucus making it hard to breathe, exercise and digest food. There is no cure.
I undertake a strict daily regime to combat the condition. It consists of over 40 tablets, nebulisers, injections and physiotherapy just to stay as healthy as possible. I have recently also been diagnosed with diabetes.
I’ve never had any complacency about my length of life or taken anything for granted; I never thought I’d live long enough to have a wife or child.
Marriage to Katie in 2003 spurred me on to believe that my destiny might be different than I had originally thought. I did have serious concerns about starting a family when there’s no certainty of being alive for them, but I was feeling healthy enough, so it seemed a natural way to keep defying my illness.
When so much of a CF life is not at all normal, it’s fulfilling to do something that your peers take for granted.
I know it’s mainly women who start to get clucky about having kids but I had pangs of desire to be a dad and used to picture myself holding my own baby.
We had to undergo IVF fertility treatment because it wasn’t possible to conceive naturally due to cystic fibrosis. IVF is an extremely exacting process: drawn out, cruel, torturous and expensive. It’s an emotional rollercoaster.
Three difficult years later, we got lucky on our sixth IVF cycle and, in May 2007, we had our miracle boy, Felix.
It felt amazing and a little surreal that I could produce a healthy child after a lifetime of suffering. But how was I going to look after him and also care for myself?
I soon discovered that being a parent was at times counter-intuitive for me, involving situations where I put my own more fragile health behind that of my son. I laid myself open to things I had previously actively avoided such as extra tiredness, increased risk of infection, through to being exposed to the elements when taking Felix out.
Katie took the brunt of the early morning wake-ups and other activities to help preserve my energy levels which, in turn, stretched us as a couple.
Emotionally I concealed my condition during the initial years of being a parent. I didn’t stop any of my treatments, I just never complained or talked about them. It seemed less important than the enormity of first-time parenting.
I didn’t completely hide my illness from my son though; Felix has always seen me on my nebuliser and heard me coughing. He doesn’t ask me about it and just takes it in his stride as children do.
From time to time I have to have intravenous treatment in hospital. Before the last one, I explained to him I had to go away for a bit to get better. I know he understood, he told Katie he was sad that I’d gone.
Generally I do as much as I can and act like any normal dad running around with Felix, which I know he appreciates.
Nicknamed ‘Little Dude’, we have some brilliant times together with our own handshake and our rough and tumble sessions. I love the way he tears around soft play areas as if he’s auditioning for Total Wipeout. I recently enjoyed building a snowman with him and teaching him how to throw a snowball and I adored going crabbing with him when on holiday in Brittany.
When I’m having a dark CF moment, Felix takes my mind off it and inspires me to keep fighting. He is a useful distraction, stopping me from dwelling too long on my personal health battle. Indeed, I only need to look into his eyes to see all my tomorrows.
I initially thought that the rigours of parenting would mean that my health would only hold out to get him started in life … but now the thought of not being there for Felix feels abhorrent.
He is the best of me, my lasting legacy, the final piece of my jigsaw. And someone I fully intend to see grow up and have his own family.
You can read more of Tim’s day-to-day experiences of Cystic Fibrosis in his personal blog.
