Unconditional

Mum enjoying her birthday gifts with me looking on

Mum enjoying her birthday gifts with me looking on

Love for your child burns deep. This unconditional love tends to plough an even deeper furrow when that child is sick or suffers from a life-threatening illness like cystic fibrosis* (CF)…

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.
Tim

Tim Wotton

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/

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About Tim Wotton

I live with my lovely wife (Katie) and spirited seven year old son (Felix) in Morden, Surrey; working full-time as a Principal communications consultant at the Fifth Business. I have played sport, particularly hockey, tennis all my life and now regularly go to the gym. Cystic fibrosis has been a huge factor in my life, but not one that overshadows it. I have always had great support from my loving family - parents Margaret and Douglas (RIP), elder brother Chris and my twin brother Jez. I have many rich life insights based on knowing I have a reduced life expectancy and battling against the odds for over 43 years. My eyes and heart have been opened by my health struggle. I feel empowered to share my life lessons to help anyone with health and life issues to overcome. My passions include Paul Smith clothes, dress shirts (believing that it's enlightening to dress like it's your last day on earth), Alfa Romeo cars, spicey food, Harlequins and England rugby, Southampton FC, Wimbledon village and common, Dorset, seascapes, sunsets and military history. I am available for public speaking on this subject matter and can be contacted via timwottonAThotmailDOTcom. I have written a book 'How have I cheated death?' based on my euphoric countdown year to 40 that was published on 30 April 2014 and available via e-book and paperback at Amazon and to order from UK bookstores.
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28 Responses to Unconditional

  1. Lesley P says:

    You have truly been blessed during your life with fantastic parents. Sounds like they got a cracker of a son!
    God Bless,
    Lesley

    • Tim Wotton says:

      My dear Lesley,
      Thanks as ever for your kind sentiment which touches as much of a chord in me as my writing does with you. I wasn’t blessed to have CF, but I was blessed with the family support to combat it.

      Bless
      Tim

  2. Sara Bowery says:

    As always a pleasure to read Tim, your mum is a truly outstanding woman.

  3. Panda says:

    Loved your mum the first time we met. she is amazing. had a lump in my throat reading that.XX

    • Tim Wotton says:

      Dear Panda,
      She had a soft spot for you when she met you in the late 90′s in Southampton – I remember it well! Thanks for taking time to reply all the way from New York!
      Love to your family…
      Take care
      Tim x

  4. Melanie Denning says:

    Very inspiring, as a mum of one with CF who’s 13, made me cry… fab skydive video as well, my hubbie did this for Owain when he was just two years old (hubbie not my son!). Always great to read your posts Tim, stay well and keep up the great work…

    • Tim Wotton says:

      Thanks Melanie for sharing your thoughts and I’m sure young Owain will be in equally good hands with a mum that is prepared to ready my prose and a dad who is mad enough to throw himself out of an plane in the name of raising funds for CF!

      All the best
      Tim

  5. Isobel says:

    An amazing post that brought tears to my eyes- as a mum of three boys and a children’s CF doctor. Your mum sounds like a really special lady.

    • Tim Wotton says:

      Dear Isobel,
      Better than most you will appreciate what I was hoping to convey with this blog post – from your comments, I have done a reasonable job of it! Do mention my story to any of your patients and their parents if appropriate…

      Take care
      Tim

  6. Victoria says:

    Wow truly inspirational … I hope I can be as amazing as your mum is to my little boy with cf xxx

  7. Victoria says:

    Oops completely forgot to add how amazing you are too Tim .. As the mum of a five year old with CF, reading your positive posts over the past months has really helped xx

    • Tim Wotton says:

      Hi Victoria,
      It’s replies like yours that provide the motivation to keep writing and sharing my news. I hope your boy is as well as possible and that your determination for his on-going health will prove decisive in the long term.

      God bless
      Tim

  8. Bristow, Rachel says:

    Tim Your mother must be so proud of you. This post bought tears to my eyes. Hope the family is all good. Rachelxx

    Sent from my iPhone

    • Tim Wotton says:

      Dear Rachel,
      We are proud of each other and know that we’ve fought a long hard battle but we also know that it’s far from over.
      The family is all doing well.
      LOL
      Tim x

  9. Richard Sharpe says:

    Another great post, mate…

    ​Sharpey 

    — Sent from Mailbox for iPhone

  10. Katie Dawson says:

    Well Tim another wonderful email full of love. Thank you for continuing to send these.

    Katie x

    • Tim Wotton says:

      Dear Katie,
      Thanks for taking time to comment and with such kind sentiment. I’ll keep them going as long as they appeal to people. I’ve also got my book all but finished and ready for publishing this year… I’ll let you know when it’s available.
      Best
      Tim

  11. Tj says:

    Beautiful article and tribute to your mum.

    I aim to fill my son with the same positive thoughts and an attitude of us beating it together. But alas, my lovely but sensitive nine year old is struggling recently with his emotions about cf. Hopefully your words (and some fun days planned) will pull him from this.

    Thank you for this article,

    • Tim Wotton says:

      Hi TJ,
      So glad that you have reached out to me and that my words have helped. It’s natural for your 9yr old boy to have some traumatic moments – both mentally and physically. It sounds like you will be there to guide him through the rainstorms to see the eventual sunlight.
      My previous blog ‘Grin and bear it’ might be of help to you both…

      All the best
      Tim

  12. Jackie Reid says:

    As a mum of a 22 year old with cf we too have faced many difficulties together & share a very special bond. Alex has a very positive attitude despite his health not being great. How lovely to read your blog, I’m sure your mum is extremely proud of you & all you have achieved. Thank you for sharing experiences.

    • Tim Wotton says:

      Dear Jackie,
      After 22 years of battling CF together, I know that you would have seen many peaks and troughs. If there’s any solace to be had, CFers nowadays have a lot more in the way of treatments available and coming soon that should make life for your dear Alex easy to manage in the long term. Until then, as I said in my original blog, ‘What cannot be cured, needs to be endured.’
      God bless
      Tim

  13. Tim Wotton says:

    This is a message from my mum, Margaret Wotton:
    “My dearest Tim, I have been filled with tears of love and amazement for the beautiful words you have chosen. There IS a special bond between us with all the hours we have spent together, mainly in your younger years, doing your various treatments.Long may you also have Katie and Felix’s love to keep you going. God bless you. Love Mum x”

  14. jez wotton says:

    Great blog, great tribute to an amazing woman (mum) & great speech, articulated with great wit,wisdom & expertise under the hardest of emotional experiences.Just when i don’t think i can admire you any more, you produce this – Legend! Both yourself & Mum!

    • Tim Wotton says:

      Dear Jez,
      Thanks for sharing such kind sentiment – it brought tears to my eyes as I read your reply while I was in the gym last week. As my beloved twin, you’ve witnessed my life-long struggle with CF, cherishing the good times and enduring the tough moments. Love you always…
      Your bro

  15. sue kruk says:

    Dear Tim, A moving piece, as usual, and a very special tribute to your Mum. She is very dear to many others too (me included) for her years of dedication to her CFT work, and her friendship and warmth. May you and your lovely family continue to prosper . Thank you for speaking out about both the difficulties and the joys which Cf brings. A balanced view. You demonstrate the immense courage shared by so many in the wider CF family.

    • Tim Wotton says:

      Dear Sue,
      So lovely to hear from you and bless you for your kind words. You have shared many crucial moments with my mum over the years and long may Zag prosper. Just in case you weren’t sure, I carry on with the spirit of your Ziggy burning deep in my soul. Without doubt, your lovely boy with the infectious smile and laugh is not forgotten and shines brightly in my mind…

      God Bless
      Tim

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