“I’ll not live long enough to have a wife and child” was a statement to my Mum on a seaside pier in the late 90’s. Back then, staying alive with Cystic Fibrosis (CF)* was not certain, so speculating about a family was furthest from my mind. But if you want something enough, miracles can happen…
In 2000 I began dating Katie who I already knew on the field hockey social scene for over six years. She helped me to celebrate my 30th Birthday and by reaching this milestone life felt different and I had an eye on a renewed future. This was a major tipping point as I had made it to the average life expectancy (as it was then) and the noose around my neck suddenly didn’t seem so tight.
We shared similar family backgrounds and had a passion for similar Black Adder and Austin Powers humour. Helpfully Katie would laugh at all my jokes… even the ones she didn’t understand.
Katie, a senior urology nurse, understood my condition and has always taken the sights and sounds of CF in her stride, never making me feel overly conscious or affected. She understood the bigger CF picture but was never phased or unduly worried; maybe feeding off my penchant of downplaying it.
There are a lot of functional activities that come with living with someone with CF; from physiotherapy, constant coughing and nebuliser sessions to intravenous (IV) treatments – these are not fun, sexy or interesting times – it takes a special type of person to be around these daily treatments and keep seeing the person ‘behind’ the illness and not get too sad, disheartened or bored.
Bride and joy
We soon bought a house together in South London and married in July 2003 on a beautiful day. During the wedding service, Katie’s best friend, Sam, read exerts from a children’s book by Sam McBratney ‘Guess How Much I love You’ which finished with our favourite line: I love you to the moon and back.
Marriage spurred me on that my destiny was going to be different than I had originally thought back on that pier with my Mum in Weston-Super-Mare.
I did have some concerns about getting married and starting a family with my lack of certainty of being alive for them, but I was feeling healthy enough, so marriage to Katie and starting a family seemed a natural a way to keep defying my illness.
The desperately sad deaths of my CF friends in my late 20’s made me more stoic – I wanted to carry their spirit with me and make my longer life count for something. 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.
Without getting too medical, my illness meant that were we to have a child, we would need to go through in vitro fertilisation (IVF) and a particular version of it called Intracytoplasmic Sperm Injection (ICSI).
IVF is an extremely exacting process and Katie could write her own gripping blog called ‘Countdown to Felix’ – it’s drawn-out, cruel, torturous, expensive and an emotional rollercoaster. Not something I would wish on any couple to be honest, but if that’s your only option, you have no choice.
There’s still room for humour – at one point while I was having one of my IV treatments and Katie was in the early stages of an IVF cycle, we were both lying on our bed injecting ourselves – I have to say that it doesn’t get much more romantic than that!!
We went through six IVF cycles over three years. When a cycle hadn’t worked, we entered into an abyss where our spirits were very low. But we worked hard at being happy for others who already had children or those falling pregnant; strongly believing that what goes around comes around.
‘Sixth time lucky’ was our new catchphrase and in May 2007 we had our ‘miracle boy’ Felix. The name means ‘happy’ in Greek and ‘lucky’ in Latin, so like his Dad, he will be ‘happy-go-lucky’.
Katie has had to suffer and endure to get through IVF and her subsequent post birth nerve damage – she has put her body through so much – and she’s still battling!
It’s a natural instinct for parents to put the welfare of their children ahead of their own. Parenthood was at times counter-intuitive to always putting my health first and this was tough to get used to. Katie took up a lot of the slack, especially the early wake-ups and during my IV treatments.
During the early years of being a parent I needed to tuck CF away in an emotional box labelled ‘Only open in an emergency’. I didn’t stop my medication; I just never complained or talked about my CF as it felt secondary to the preoccupation of being a parent.
That emergency came in August 2009 and the box prized open when I was diagnosed with CF related Type 1 Diabetes; and I had to get to grips with it – medication, diet, activity – as quickly as possible. This has led to my more open approach about my struggle and what I have accomplished.
About a boy
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!
Although I know I’m biased, I’m in awe of how beautiful my son is. Indeed, a good friend tells me that my voice and face change when I talk about him.
When I’m having a dark CF moment, Felix takes my mind off it. Often after I have coughed heavily, he will pat my chest and say: “Daddy, better, better!”
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. This is best expressed in a WW1 poem by Wilfred Owen, ‘Wild with all Regrets’:
“A short life and a merry one, my buck!
We said we’d hate to grow dead old. But now,
Not to live old seems awful:
Not to renew my boyhood with my boy…”
I hope Felix reads this one day so that he can understand what it took to bring him into this world and what he means to us. I don’t expect a thank you from him as gratitude from your child isn’t always expected or forthcoming. I just want him to know that miracles can happen and he’s our proof. We love our boy to the moon and back.
They say that what doesn’t break you makes you stronger. It feels unfair to have gone through so many storms to get our boy, but the rainbow at the other end has more than made up for it.
Felix is our ‘miracle boy’ and a boy that I fully intend to see grow up into a man and have his own family.
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Look out for my next post as I countdown to my 40 year milestone…
* Cystic Fibrosis is one of the UK’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.