I’ve been celebrating this last week since my gorgeous son Felix turned five. Every parent takes delight in the milestones of their children, but there’s extra poignancy for me…
Born in 1971 and diagnosed six months later with the chronic illness cystic fibrosis (CF)*, I wasn’t expected to live much beyond my teens. This forced me to never be complacent about life or take anything for granted. This was exacerbated by the sad death of CF friends. In my 20’s I certainly never thought I’d live long enough to have my own wife and child.
Marriage to Katie in 2003 spurred me on that my destiny would be different and we began to consider having a baby in our lives.
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 I used to picture myself holding my own baby in my arms.
Unfortunately, due to my CF and not being able to conceive naturally, our road to paternity was not a straight-forward one as we had to undergo IVF.
During the IVF rollercoaster where the odds are less than 25 per cent success, we hoped for the best but feared the worst. To have just one child feels unachievable so we didn’t plan or dare to dream of a large family. IVF is such a strange dynamic because although one would feel amazing, we had to be prepared for the double-trouble of twins!
Anyone that has really struggled to conceive will know that there’s only one letter more between the words ‘none’ and ‘one’; but there’s a whole world of difference when it comes to having one child as opposed to having none.
Three difficult and torturous years later on our sixth IVF cycle we finally got lucky and in 2007 we had our miracle boy. After reaching the holy grail of paternity, I wanted to hold Felix for an eternity.
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 life-time of suffering. Felix does not have CF. He is a carrier but doesn’t suffer in any way. In fact, I would go as far to say that he is my ‘healthy clone’ and as vibrant as any boy I’ve ever seen at his age!
Nothing can prepare you for being parents, especially making the adjustment when there are health problems to factor in. Katie bore 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.
Being a parent while managing the daily CF regime of 40 tablets, nebulisers and physiotherapy is punishing and 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. Only the other day, when he ran out of steam after playing his heart out at a playground, I carried him up-hill on my shoulders for over a mile to get back to my parent’s house. We only got through the ordeal by playing eye spy and singing (very badly) out loud!
More so than most parents, I’m very aware of the risks of being too close to him when he has a sniffle and as harsh as it sounds, I shield myself by not kissing him at these times.
I don’t completely hide my illness from Felix, who has always seen me doing my nebulisers and heard me coughing. He doesn’t really ask me about it and just takes it in his stride as children do. Before my last intravenous treatment, I explained I had to go away for a bit to get better. I know that he understood, as 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 managing the music at his fifth birthday party pass-the-parcel (quite a responsibility to make sure over 20 children all get a turn to unwrap the parcel and get a gift); and I adored going crabbing with him in Brittany when on holiday. Best of all is our shared catchphrase: “I love you to the moon… and back.”
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.
‘The one and only’
Once we got through the early couple of years, we started to have the natural feeling of wanting to give Felix a playmate. We began to really notice the standard question from other parents when out with Felix: “Is he your only one?”
Unfortunately two further IVF cycles over the last few years have been unsuccessful, including the early loss of twins, so we have decided not to have another child. The whole IVF process and eventual sad outcome cuts to the very core for any woman, so Katie understandably has gone through a physical and emotional hell and will always hold a torch for another child. There will be times when we do think we would have liked another one, but it’s just not meant to be. We’ve got Felix – our ‘one and only’ and we feel blessed to have him.
It would be callous to say we love our son more than others love their children just because we struggled with IVF, but I definitely believe that you appreciate something more if you have had to strive to obtain it.
Every step of a CF life is a challenge and there seems to be hardly any low hanging fruit or easy pickings to get what you want – nothing is taken for granted which in turn gives you a richer perspective on what is important in life.
Felix and I have both ‘broken the mould’ in our lives – me to stay in this world and live a longer, fuller life and Felix to enter 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.
So I raise a toast to my son and wife. Normally it would be a cup half full but this particular cup of love is overflowing…
I will keep you posted on my life affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign up if you have not already done so.
Yours cup half full.
My dear friend, Ann Hirst, is taking part in the Great Northern Run for CF so if you feel inclined, I’d be very appreciative if you could donate to help Ann run like mad!
* Cystic Fibrosis is one of theUK’s most common life threatening inherited diseases, affecting over 8,500 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations.
For more information and to find out more view the CF Trust Website