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Learning to Live in the Moment When You Have a Child with a Long Term Health Condition

Duchenne

Image: Kieron Sales

Learning to live in the moment is no mean feat. But when you have a child with a long-term health condition, not focusing too far ahead often becomes second nature.

We caught up with Kieron, whose son Alfie has Duchenne muscular dystrophy, to find out more.

Learning to live in the moment

“We live in the moment by trying to take each day as it comes and not thinking too far into the future. You do find that your mind takes over and you can’t help but wonder the what, when or why?

“Personally, this usually happens to me when I’m on my own away from my family, I get overridden with anxious thoughts. These thoughts and the fact I was blocking out the future in some respect prompted me to refer myself for counselling. In some ways, I have to prepare myself for the future as our son and daughter are going to need us to be strong for them. I required a coping mechanism.

“Some days it’s mentally and emotionally very tough to live in the moment and I have just learnt that yet another young life has been taken by Duchenne. Jacob Thomas was just 25 years old. That’s no age but unfortunately, it’s the harsh reality that Duchenne parents face when their child is diagnosed. His passing illustrates how devastating this disease really is. Jacob lived his life to the max and even competed in the London 2012 Paralympics, achieving World Number One in his sport, Boccia. In my mind, he’s not just an inspirational sportsperson, he’s an inspiration to all those affected by Duchenne and should be to every human being on this planet.

“I remember when our son was first diagnosed in 2018, one of the first things I did was google ‘Paralympians Duchenne’ and to be honest not many names or events came up. This kind of outlined to me the severity of the disease and told me what we had ahead of us. One name that did come up though was Jacob Thomas and if we can give our son something to strive for then Jacob is the ultimate role model. RIP Jacob.”

How a diagnosis can change your outlook on life

“I honestly think when something life-changing happens to you or someone in your family you can either sink, stay afloat or swim.

“I liken our efforts to swimming the channel! You can’t allow yourself to wallow in self-pity as you’re just depriving them of a childhood full of memories.

“Our son’s diagnosis has obviously had a massive impact on our lives and our total outlook on life. I used to debate even something as simple as buying a new shirt, now I just think “I’m having that!” My wife and I made a pact that everything we did together would all be about making fantastic memories that we’ll treasure forever. For instance, we always planned to take our children to Disney World, Florida. Our plan originally was to take them when they were between eight and 10 years old but Duchenne is a complete game-changer, we wanted our son to be able to enjoy it to the max whilst he still has full mobility.

“Thankfully we achieved our goal (and before the pandemic!) as we spent two weeks there in November 2019, we stayed at Animal Kingdom Lodge and I have to say it’s the most fantastic hotel I’ve ever visited! Our room had a savannah view and we would sit on our balcony whilst Giraffe’s and Zebra’s strolled past! Absolutely amazing!

“When you get hit with a life-limiting diagnosis it really changes the aspirations you have, not just for your children but for yourself. You worry about how it will not only affect your child but also the psychological effect it may have on their sibling in the future. Our daughter is a very sensitive little soul and I 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 by providing her with our undivided love and support.”

A different take on parenting 

“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 in the early days of our son’s diagnosis, they may have even thought 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) I think it’s tougher for the parents to deal with a life-limiting diagnosis as kids are often very resilient and just get on with things. There are also so many different complexities to his condition and most boys with Duchenne muscular dystrophy have learning or behaviour difficulties. It’s not just a muscle disease.

“We have amazing lifelong friends who continually support us, they tell us we’re strong and that we’re doing an amazing job and that really does give us strength and determination. But they will never truly feel the pain we feel as parents. That’s not a criticism, it’s just the reality of our situation.

“There are certain things that our son physically cannot do. If we go to the park we can’t really let him roam free near the climbing frames or the slides, he requires assistance. Or if he gets invited to a birthday party that involves things like climbing or trampolines, he doesn’t go. It’s not good for his muscles, so we explain this and unfortunately decline the invitation. I would never ever expect someone to change what they’re doing for their child’s birthday party just to suit our son. We’d just arrange another meet up so they could all still celebrate together. That way nobody is excluded or misses out. You just take a different approach.

Finding your tribe

“Having now met up with other parents who are on a similar ‘journey’ you instantly feel that connection. You feel a sense of relief that someone has had the same experience as you or can offer you just a little bit of advice and quite often it goes a very long way! We have met some amazing people and you can’t help but to be inspired. They give you the strength to fight what’s in front of you.”

Advice for someone whose child has just received a life-changing diagnosis

“I would say first and foremost take leave from work to get your head around things. Find support through counselling and contact a local charity to seek some advice and direction. Unfortunately, our son’s diagnosis and the support afterwards was truly shocking. No parent should go through what we went through. I only took the Friday off after we had received the diagnosis and returned to work on the following Monday. I was at such a low ebb that I should have given myself that time to process everything that was happening but instead I just tried to carry on and use everyday life as a distraction.

“You’ll also find that you will come across a lot of hurdles whether that is with the NHS or your local Council. Everything for us has been a constant battle, it shouldn’t be that way, but stick to your guns and don’t roll over. After all, you just want the best for your child and your family.

“You never really know how strong you are until being strong is the only option you have.”

Kieron blogs about his experiences with his son and living with a life-limiting condition at Duchdad. You can read more of his work here, and find out more about Duchenne here.

Friendili is a free social networking and support app for parents who have children with long-term health conditions and disabilities. You can find out more here.

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