Last week my dear mum, Margaret Wotton, celebrated her 70th birthday. At a family engagement she received a fitting tribute highlighting some amazing facets of her life read out by her sister Jenny and my brothers Chris and Jez.
When it was my turn to pay tribute for her 42 years of selfless love and care for my CF, I was initially overcome with emotion and had to take a moment to steady myself. I stared at the words on my card but just couldn’t get them out…
‘Unconditional love and support’
Sometimes in life, words are just not enough to convey the depth of what you want to say and this moment proved no exception. I was choked by the utter devotion that mum had shown me and composure had to take a back seat.
For the last six years Katie and I have had our own taste of this unconditional love for our son Felix. Only this morning, the hug Felix gave me filled me to the brim with unbridled adoration.
How deep is your love?
The impact of a sick child on his or her parents and close family shouldn’t be underestimated. I’ve learnt over the years that it’s not just the person suffering who’s affected by the diagnosis of CF but the close family and friends are enveloped by it and have a crucial role to play.
As mentioned before in my blog post ‘Not alone’, my parents, brothers, Katie, family and friends have helped me enormously in my survival over the years.
People inherit genes from their parents. To have CF, a child must inherit one copy of a mutation of the CF gene from each parent. In other words, the child must have two copies of the gene with mutations to have CF. My mum and dad both carried the CF gene without realising and when they had children, there was a one in four (25%) chance of any offspring developing a form of the illness (there are over 900 variations ranging from mild to severe).
Over the years, my parents might have been prone to blaming themselves that their mutual genes had caused me to inherit the condition. Especially as their firstborn, Chris, was not suffering from it, they had no way of knowing that they were both CF carriers when I was born. I’ve always stated that there’s no blame to be affixed to anyone – it was just plain unlucky.
While dad got me playing sport which boosted my lungs, mum instilled the discipline in me not to miss my treatments. She also left no stone unturned in finding the best medical care – pushing the NHS envelope – by securing me the expert services of Dr Ron Knight in my early teens. This proved to be a defining intervention in my care as it led to my transition from stuttering health to buoyant lung function and playing field hockey for England schoolboys.
My mum has been a nurse throughout her working career, starting off at Great Ormond Street Hospital where she looked after children with CF. Was it serendipity that she had that experience and knowledge which helped her to diagnose and treat me? Unfortunately for mum, she got extra nursing homework coping with my ailments and medical needs.
A snapshot of my requirements included supplying bespoke powdered milk at primary school instead of the milk cartons that the other kids received. These cartons were often left out in the sun, so maybe I was better off with the grim tasting synthetic powdered version!
Enzyme powder had to be sprinkled onto my food to help me digest it, which always looked like there had been an extreme snowfall of dandruff. Mum helped to train others to conduct my much-needed physiotherapy when mum and dad were not around to help. Most notably she coached my lovely school teacher, Alan Dennis, ahead of a week-long trip to France and my cub-scout leader for an overnight cub camp.
In my early teens, when I was an in-patient at Brompton Hospital, mum stayed in the affiliated local accommodation so that she could be close-by and run errands for me – mainly to the nearest sweet shop – CF had to have some form of fringe benefits!
Mum fitted in my physiotherapy before school when time was tight and early evening when all I wanted to do was to play with my brothers. This must have been like trying to persuade the world-renowned footballer, Pele, to substitute off the pitch when he had already scored two goals and was hungry for a hat-trick. The easy thing would have been to relent and let me do what I wanted to do but she had to play the ‘bad cop’ on occasion to get her way. This in turn set the right tone for the independent ownership of my treatments such as the physiotherapy, nebulisers and tablet taking so that they became routine and second nature.
Mum guided me through a multitude of painful, stressful and frustrating times as we defied CF together; especially during over 60 intravenous (IV) treatments which were mainly conducted at home. Mum being a nurse and un-phased by this scenario and responsibility made a massive difference. This paid dividends as we traversed all the annoying complications that cropped up in the early years of IV long lines – blocked catheters, leakages of blood and antibiotic, rash and fever reactions to drugs – yes, we’ve been through hell and back countless times…
Indeed, her nursing ability underpinned the care and support I was fortunate to receive. From that vital early diagnosis at six months, to being prepared to do my physiotherapy, scour the NHS for better care, manage my IV’s at home rather than me being in hospital, to understanding my CF Related Diabetes from her days running a diabetic clinic at a GP surgery and reassuring me that I could cope with two major conditions. She was also astonishing in her in-house care and patience with my dad when he was diagnosed with Motor Neurone Disease right up to his sad departure last November.
I was a pretty good patient but sometimes I went off the rails and didn’t cover myself in glory, which didn’t make it easy for my parents. They would have had to hold their nerve and bite their tongues when I left home for university, especially in my first term when my health dipped badly; and during my 20’s when I was in full party mode, often in smoky venues, much to the detriment of my lungs and energy levels.
The name’s bond
Nothing was ever too much and my parent’s support and care was limitless. They wanted to help alleviate my suffering and make the horrible medical interventions as bearable as possible.
You tend to mirror the behaviour and attitude of your parents. Their desire to keep me well enforced my own willingness to maintain my health. I expect if they had given up on my chances of survival then it would have caused me to pack it in as well. Instead, their commitment drove my own commitment to the cause.
Since I flew the nest aged 18, outside of family events, I have spent more time back at home with mum and dad than my brothers; especially during the laborious IV sessions. This extra time with them along with our shared ambition to defy CF has definitely intensified our bond and kept us close.
Back to my tribute speech last Sunday. After a few moments, but what felt like an age, I did finally get the words out and they were thankfully well received. When I reflect on that moment of emotional strangulation, it’s not surprising with the journey we’ve been on together.
I raise a toast to my mum, Margaret Wotton, and her lasting legacy. Without her I wouldn’t have lived to 30 let alone beyond 40. She has given me 25 years more than I was expected to have on my diagnosis back in 1971. Without her, there would be no marriage to Katie and our child Felix wouldn’t exist. Without her, I would be ashes blowing gently in the wind…
I will keep you posted on my life affirming moments, trials and tribulations as and when they happen. Please keep reading, sharing my blog and do ‘sign up’ (on the right hand side tab) if you have not already done so.
Yours cup half full.
See below to view a film of a recent tandem jump for CF in Texas by my work director, Enda Logan. It’s moments like this that I know why I’m still here on this earth surviving the ravages of CF.
Enda’s fundraising page: http://www.justgiving.com/enda-logan
* 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. For more information and to find out more view the CF Trust Website. http://www.cftrust.org.uk/