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Adversity > Aspirations > Adapting (an alternate Father’s Day Guide)

Father’s Day comes around once again which also means it’s nearly my birthday! Usually, it falls on the same weekend to the dissatisfaction of my wife, Louise. ‘Costs me a fortune’ is all I hear that weekend! I’ve written blogs around the time of my birthday before but never about Father’s Day and what it means to me. I come from a family where the dads get stuck in and we do our share and will always do anything for others, so I’d like to think that has continued down the family tree.

A young boy with his mum, dad and sibling

From growing up, I always wanted a family and I have my ideal fantasy family team in that we have one girl and one boy. Being a dad means the absolute world to me.

“It’s a love like no other, a bond like no other. It’s an even stronger bond when one of your children has a life limiting condition.”

I remember in 2012 when our daughter, Mila-Rose was born and the first time I held her in my arms. Well, she was actually thrust into my arms by the midwife without any fatherly preparation at all! The midwife completely caught me off guard, almost passing her like a rugby ball but there was no way I was letting her go. I remember thinking before she was born, what if I drop her when I first hold her? There was no way that going to happen once she was in my arms.

A dad with his two young children - one is a boy and the other is a girl

Then Alfie (or Alfonso as I like to call him occasionally) came along in 2014 and although they followed a similar path in terms of being born a month early, it felt slightly different. Alfie had to go straight into a warming cot and it almost felt like the alarm bells were there from the instant. A parental intuition? I’m not sure. Just a feeling this wasn’t going to be the same pathway.

Almost four years on in 2018, maybe my parental instinct was right as Alfie was diagnosed with Duchenne muscular dystrophy.

“The diagnosis felt like a knife through our hearts, not only because of the uncertainty of a condition we’d never really heard of, but also in the way it was handled by our local services.”

I found it very difficult personally to accept Alfie’s diagnosis, I think I was a little bit in denial during the tests and was hoping that the hospital had got the tests all wrong. Looking back at that time there are things I’d do differently, one of which when we had the diagnosis.

It was confirmed on the Friday and stupidly, I returned to work the following Monday! I now say to any newly diagnosed dad I speak with to make sure you take that time to process what you’re going through. You are going through it, not your employer. They can empathise but they’ll never really understand how truly gut wrenching it feels to be dealing with what you’re dealing with.

Aspirations also change and there are things that you probably think you can’t/won’t be able to do but you can! You just adapt them or find a different way to do them. I’m a big football fan so being the typical male you dream of playing football in the park with your son, taking him to the match etc.

We still do both but it’s in a slightly different way. Yes, we play football in the garden or on the PS5 but we adapt it to his needs (try telling Mila-Rose that sometimes!). We have been to watch Alfie’s beloved Liverpool FC on a few occasions and we share that father/son love of the game, in particular during the rendition of ‘You’ll Never Walk Alone’. I only wish we could get more tickets in the LFC disabled membership ballots!

My relationship with Alfie is very close. We have our own unique bond. He has recently taken to calling me ‘Papa’ so I’m half expecting a Papa’s Day Card! Our bond grew even stronger very recently when we returned from our family holiday in Majorca, Alfie had severe Gastroenteritis and went into adrenal crisis. He was rushed to hospital for treatment and thankfully as the evening progressed he was on the road to recovery. It was a very scary experience and brought home the complications he can endure due to his condition. Alfie is a very unique character and he’ll happily tell you that to your face! Alfie can be lying on the couch watching TV then either burst into opera or simply just say ‘I love you Papa’. My own sense of humour has always been quite dry, and since his diagnosis, can get a bit dark at times. I will continually wind up Alfie (and Mila-Rose) with little jokes/pranks but again my believing is this will stand them in good stead through some of the dark times that lay ahead.

“Humour makes us more resilient, creative and resourceful, something which we definitely learned through the pandemic!”

I suppose what I’m trying to say is that we as parents don’t let Alfie’s condition define him or us as a family. Yes, it’s hard when the after school clubs are all physical education groups or his friends birthday parties are at a trampoline park or ninja warrior and you have to explain why he can’t do that the same as his friends, but it’s about digging out that alternative or adapting it to his needs. I think it’s almost fitting to end on the quote of the late, great inspirational rugby league legend, Rob Burrow and a very apt motto for anyone to take forward in life… ‘In a world full of adversity, dare to dream’.

Happy Father’s Day to all the amazing dads / carers. Stay strong.

Kieron

Are you a dad?

Join our Virtual therapeutic support groups

We partner with Louise Halling, a professional counsellor and psychotherapist with limb girdle muscular dystrophy, to run groups similar to facilitated peer support. These sessions offer a confidential, supportive space to foster emotional discussions and build connections with other fathers. They take place over Zoom.

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