First of all I’d just also like to say a big thank you to everyone that has taken time to read my blog. I really appreciate all your support and your positive comments. You always worry when you start something new, how it will be perceived by others. #sofarsogood
I had messages from fellow Duchenne Dad’s/Mum’s and Grandparents. I also had a very supportive message from Jon-Rey Hastie, CEO at DMD Pathfinders. Jon, 38 has DMD and was diagnosed at the age of 3. He is recently married and a homeowner! For most people this is the norm, but for a man with DMD it’s truly inspirational and proof that a positive future is possible.
I’d been thinking of doing a blog for a while but like most things I just kept putting it off. Although this is only my second blog, I do feel that it has helped me in releasing my thoughts. I feel now that I have an ‘out’ where I can release a bit of the tension/stress rather than it being pent up inside. Almost therapeutic.
It didn’t take me long to think of my blog tagline, A Life Fulfilled In Everyway… you may or may not have noticed that it also spells out A.L.F.I.E when abbreviated 😉
My next challenge is thinking of one for our daughter, Mila-Rose! 🤔 (Answers on a postcard please)!
I think when something life changing happens to you or someone in your family you can either sink, stay afloat or swim. Thankfully I’d like to think we’re really going for it as a family and liken our efforts/plans to swimming the channel!
We had a few very dark months after Alfie’s diagnosis but the love and support from our family and friends supplies 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 can’t just wallow in self pity.
Not that we wouldn’t have created marvellous memories for them anyway, it just pushes you more to grab life by the balls and squeeze every last bit out.
The picture of Mila-Rose and Alfie for me says it all, they are both so happy and smiley (well most days!). I wouldn’t change either of them in any way, shape or form (aside from the obvious!). I often find myself just gazing at them both when we’re at home and feel so blessed to have 2 beautiful children. I often tell my wife Louise that they obviously get their looks from their Daddy!
Alfie is very affectionate. He loves to sit and stroke your face. He’ll say “love you Daddy/Mummy” or his favourite at the minute is to ask if you’re his best friend! I could snuggle up to his cheeks all day. He has beautiful big brown eyes and eyelashes every woman would die for! He’s just too cute 🥰
Mila-Rose is 6 years old going on 16! 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 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.
We live for the moment, try to take each day as it comes and not think too much about the future. Some days that’s mentally and emotionally very tough. You find that your mind takes over and you can’t help to wonder the what, when or why? For me personally, this usually happens to me when I’m on my own away from Louise (my wife), Mila-Rose and Alfie. Thankfully I only work 40 hours a week so it’s not like I’m away from them that much!! #stircrazy
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 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 as kids are often very resilient and just get on with things. Maybe only the parents who are on a similar ‘journey’ will only ever understand that the pain for parents will never go away after diagnosis . (I hate that word JOURNEY, sounds like we’re on X-Factor and the dream is over!) 😂 Note to self, don’t use it again!
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. I’m currently trying to build his sense of humour up by playing little practical jokes on both Alfie and Mila-Rose or winding them up. 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, 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 few months ago and unbeknown to us at the time of choosing the film, the lead character Trevor (Craig Roberts) has DMD. At that moment we both 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. Myself and Louise were 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.
Speaking of humour, I’ve made an executive decision that at the end of each blog i’m going to sign off with either a funny story/tale or maybe even just a joke so here goes and this is a true story that happened to me when I was 12/13 years old:
I had been playing football at the 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 he asked me “What turn’s 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 couple of times.
He saw my bemusement before saying sharply “What turn is he on, 6-2 or 2-10?”.
Only then I realised he meant what shift was he working!!!
Thank you and goodnight. I’m here all week!