Me, my son and cystic fibrosis
My name is Tim, I’m 48 years old, and I still have my original lungs. I live in Wimbledon, I’m married to Katie, a senior nurse, and I have a twelve-year-old son called Felix.
My journey to becoming a parent was not an obvious and expected one
I never had any complacency about my length of life or took anything for granted. In my 20s I never thought I’d live long enough to have my own wife and child.
Marrying 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 a 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 and breaks the CF boundaries.
Due to my CF, we had to undergo IVF which is an emotional rollercoaster – drawn-out, cruel, torturous, and expensive.
Three difficult years later, on our sixth IVF cycle, we got lucky and in May 2007 we had our miracle boy Felix. The name means ‘happy’ in Greek and ‘lucky’ in Latin, so like me, he will be ‘happy-go-lucky’.
At last, my beautiful boy was in my arms. It felt amazing and a little surreal that I could produce a healthy child after a lifetime of suffering. Now, I would find out if I could handle this extra responsibility…
How was I going to look after my son and also take care of myself?
Nothing can prepare you for being parents, especially making adjustments when there are health problems to factor in. Emotionally I hid CF away during the initial years of being a parent. I didn’t stop any of my treatments, I just never complained or talked about my CF, which seemed less important than the enormity of first-time parenting. 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.
I took on the new challenge of being a parent in month-long blocks – get through June and then take on July – rather than project too far into the future and cause myself too much anxiety.
I had more to consider as a parent with CF than other parents
I soon discovered that being a parent was, at times, counter-intuitive, involving situations that put my own health second. From the extra tiredness, to the increased risk of infection, to being exposed to the elements when taking Felix out.
More so than most parents, I’m very aware of the risks of being too close to Felix when he has a sniffle and, as harsh as it sounds, I shield myself by not kissing him at these times. I certainly do not share his eating utensils, cups and food. One example of my desire to protect myself from cross-infection is that I will never eat the same ice cream as him, as I see so many parents doing without a second’s thought.
I do miss out on sharing particular life moments with him, but common sense has to prevail for me. I wouldn’t be terribly happy with myself if I let my guard down and subsequently got a cold from him, which could deteriorate my health. I am delighted to be his dad but it comes with certain limitations.
Generally, I do as much as I can and act like any normal dad running around with Felix, which I know he appreciates. Felix is a force of nature, has a passion for life and is a constant blur, socialising with anyone and everyone – the apple hasn’t fallen far from the tree!
I was always open with Felix about my CF
I didn’t hide my illness from Felix, who has always seen me doing my nebulisers and heard me coughing. Felix has grown up surrounded by medical paraphernalia and has become accustomed to seeing me use my bizarre-looking nebuliser and taking my tablets, which he calls "Daddy's sweets"!
As he’s grown older we have had chats about my health and I know he’s concerned about not always having me around. We have a strong bond which has been heightened over the last two years as I was his hockey team’s coach. He’s also super proud of my published memoir ‘How have I cheated death?’ which he brings into school to show his teachers and friends. I even presented to his primary school about creative writing and becoming an author.
There are big challenges to overcome with being a parent
One of these is my primary instinct to maintain my health, which has been systematically built up over the years. Early on, it often involved situations that put my own health second. At the same time, being a parent while managing the daily CF regime of 40 tablets, nebulisers and physiotherapy is punishing and at odds with always being able to play my part in parental duties.
Katie has often felt like a one-person family with my absences around the house during medication times and especially when I go away for my IV treatments. Indeed, I have just started an IV as I write this blog and Felix is obviously concerned for me.
There have been many rewards to being a father
When I’m having a dark CF moment, Felix has the knack of taking my mind off it. His acts of kindness and compassion help to inspire me to keep fighting my wretched illness. 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.
Felix and I have both broken the mould in our lives – me by staying in this world and living a longer, fuller life, and Felix by entering it. He’s 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.