I’ve not written a blog in a while but as it’s Rare Disease Day, I thought I’d rehash a past blog post as I think it kind of sums up what it’s like when a rare disease comes into your life.
First of all, I’d just also like to say a big thank you to everyone that still takes the time to read my past blogs. I really appreciate all your support and your positive comments. You always worry how it will be perceived by others but three years on from my first blog, I still get people contacting me from all over the world who tell me how they resonate with what I’ve written.
Although this was only my second ever blog, I felt that it helped me release my thoughts. It was good to have an ‘out’ where I could release a bit of the tension and stress that was pent up inside. Cathartic is the best description.
I think when a rare disease happens to someone in your family you either 1. Sink, 2. Just about manage to keep your head above water or 3. Swim. Thankfully I’d like to think we’re still really going for it as a family and liken our efforts to swimming the channel! Don’t let the rare disease defeat you!
We as a family had some very dark months after Alfie’s diagnosis in 2018 but the continued love and support from our family and friends supplied us with so much strength and determination to go out there to make the most fantastic memories for our two beautiful children.
How could we deprive them of a childhood full of memories? We couldn’t just wallow in self pity (not that we wouldn’t have created marvellous memories for them anyway!) A rare disease diagnosis has pushed us to grab life by the balls and squeeze every last bit out. I wouldn’t change Mila-Rose or Alfie in any way, shape or form (well aside from the obvious!). I’ll often find myself just gazing at them both when we’re at home and feel so blessed to have 2 beautiful children. I often say to Louise that they obviously get their looks from their Daddy!
Mila-Rose is 9 years old going on 19! She has her Mum’s beautiful looks and glowing olive skin. Her big brown eyes will break many a heart in years to come. I can see already that I’m going to have practice my ‘you upset my daughter and there’ll be trouble’ look! She’s a very sensitive soul though and as well as worrying about Alfie’s future, you can’t help but wonder how things will also affect her in the long term. We’ll do anything and everything to make sure she gets the best start in life with undivided love and support.
Alfie is very affectionate. He still loves to sit and stroke your face. He’ll say “love you Daddy/Mummy”! I could snuggle up to his cheeks all day long. He has beautiful big brown eyes and eyelashes every woman would die for! He’s just too cool for school!
We live for the moment, try to take each day as it comes and not think too far into the future. Some days that’s mentally and emotionally very tough. You do find that your mind takes over and you can’t help to wonder about the What’s, When’s or Why’s?
For me personally, this usually happens to me when I’m on my own away from Louise (my wife), Mila-Rose and Alfie.
Duchenne is a rare disease and each boys prognosis will be completely different to another so although you know what lies ahead in the future, you’re not quite sure when certain things will take effect. I’m not altogether sure if everyone quite understands that though and often people may think that nothing is going to happen just yet so you have no need to worry. Let me tell you, it’s always there and in some aspects (not all) it’s probably tougher for the parents to deal with a diagnosis like Duchenne. Kids are often very resilient and just get on with things. Maybe only the parents who are on a similar path will only ever understand that the pain will never go away after diagnosis. Alfie is very strongwilled and stubborn (I’m not quite sure where he gets the latter from!) but hopefully this will stand him in good stead in the years to come. Over the last few years I’ve built up his sense of humour up by playing little practical jokes on them both. Alfie’s usual response is “Are you joking Daddy??”, followed by a cheeky laugh! I think if we can get through the tough and testing times with a bit of humour thrown in (sometimes often dark!!), it won’t make what’s thrown at us in the future quite as hard to deal with.
We watched the film The Fundamentals of Caring on Netflix a couple of years ago and unbeknown to us at the time of choosing the film, the lead character Trevor (Craig Roberts) has Duchenne. At that moment, Louise and myself looked at each other and considered switching to another film. I’m so glad we didn’t. It’s about a writer (Paul Rudd) who retires after a personal tragedy and becomes Trevor’s carer. The two then embark on an impromptu road trip, but they start to understand the importance of hope and friendship. We were both crying laughing one minute then shedding tears the next. It’s a real emotional rollercoaster of a film but it gave us both a huge sense of hope for not just Alfie’s future but our family. I really recommend you give it a watch to get a small insight into what it’s like to be affected by a rare disease, albeit a dramatised version. Also, on Amazon Prime at the moment there is also A Space in Time. This is a documentary about two young brothers with Duchenne which celebrates the power of love and togetherness. We haven’t got round to watching it yet but I’m sure it would give you an understanding of a rare disease diagnosis.
Thank you for taking the time to read this blog. I’ve rather hurriedly put it together for Rare Disease day but hopefully it will prompt me to write more blogs in the near future as I find it a great way of connecting. Life has changed quite a bit for me personally since my last blog in June 2021 so an update is on the horizon!
I made an executive decision to end each blog that I wrote with either a funny story/tale or maybe even just a joke so some of you may have read this before but it’s worth a rerun… This is a true story that happened to me when I was 12/13 years old… I had been playing football at the local park and I bumped into an elderly gentleman who was mates with my Grandad. He was a regular churchgoer and a proper northerner! He also knew my Dad. I was chatting to him about football and then out of nowhere he asked me “What turns your Dad on?”. I was a little taken aback by his question as one he was a churchgoer and two it’s not something you ask a 12/13 year old boy about his Dad! He persisted asking the same question a few times. He saw my bemusement before saying very sharply…
“What turn is he on, 6-2 or 2-10?”
Only then did I realise he meant what shift was he working!!! 6am – 2pm or 2pm – 10pm!!
Thank you and goodnight!
I’m here all week!
2 thoughts on “Rare Disease Day 2022”
Have really ‘enjoyed’ reading your blogs… it’s like taking a trip back in time to 2011 onwards when Harrison was diagnosed at 5. It sounds like you’re doing some amazing stuff for many, amazing work! Have you watched A Space in Time yet? It was a pleasure to be a small part of. If you fancy another to watch about a Dad, the makers of A Space in Time also made, The Challenge about myself and Harrison in 2015. You’ll find a link if interested in my Linktree below… much love and if you want another Duchenne Dad to chat to from time to time I’m also around.
Thanks for messaging and also taking time to read my blogs.
I’ve not got around to watching A Space in Time yet. It’s been on my watchlist for a while. Every time I start to watch anything these days I wake up at 1/2am on the sofa!!!
Yeah it would be good to keep in touch. I do wish the ‘Duchenne Dad’s’ had a bit more of a solidarity. From my experience, men’s support groups are started by various charities, you get lots of posts in the beginning but then it just stops! I know that’s just how us blokes work but it would be good to meet up regularly. It’s good to be with others occasionally who just ‘get it’.