Navigating a new world as a mum of a boy with DMD

It’s often said that ignorance is bliss. However, in the case of inclusion and representation of people with disabilities in the media it’s clear that there is still a long way to go in terms of raising awareness. I’m Sarah Hyde, L&D Digital Developer, and to mark International Day of Persons with Disabilities, I wanted to share my story as a Duchenne Muscular Dystrophy (DMD) mum.

If it doesn’t impact our own lives, we don’t tend not to think about it.

I hadn’t until December 2021 when alone (during Covid) I was given the devastating news that I was a carrier for Duchenne Muscular Dystrophy (DMD). What I now know is a life limiting progressive muscle wasting disorder caused by a gene mutation at birth. The neurologist said as a female I would be fine, but boys are not so lucky.

This is when Google is not your friend. As I quickly scanned the symptom’s I could tick off most of them for my youngest son, Jensen. I felt sick, deep down I knew what it meant. In that moment everything went silent, and my world stood still as I waited two months for a formal diagnosis for my two boys, aged 2 and 5 at the time. Perhaps I always knew after Jensen spent his first nine weeks in the world on oxygen. They have said this is not related but I suspect that is lack of research for such a rare condition.

Is disability something to fear?

Growing up in the 1980’s disability was something to fear, I hate to say it but having spoken to friends I don’t think I’m alone. However, when I was an adult, I learned that my cousin had William’s syndrome. Why did I not know this growing up? As a family it was not spoken about, like a secret not to be shared. Why couldn’t they explain to us the reason Matthew’s face looked a bit different and how he liked big cuddles and could get very attached to things. As a shy child, I didn’t know what to say or how to act. I wish I’d known what I know now and could have been a better cousin.

Jumping ahead a few weeks post diagnosis, I learned that DMD is a progressive condition that would, over the course of Jensen’s short life, attack all his muscles until his heart and lungs failed. More importantly, there is no cure. The feeling of helplessness was overwhelming. My whole world changed in an instant.

When you’re a parent and your child is hurt or gets sick, normally you can either help them get better or take them to see a doctor who can. In Jensen’s case this is not possible. Sometimes for all the money and the research, doctors can’t fix what’s wrong. Having no control over this is a daily struggle.

Why am I sharing this story?

Things get broken, people get broken, I am not alone. Reading Rob Delaney’s ‘A Heart that works’ has taught me that sharing these stories is about educating people. As Rob puts it ‘if people felt a fraction of what my family…feels, they would like what this life and this world are really about’. There is something beautiful in that.

I can’t help but smile when he recounts friends who forget his son died, then they remember, then they forget again. His words really resonate with me. While I feel incredibly lucky to have my wonderful boy with us, there is still a grieving process for the life you thought you’d have.

I recently turned 40, how could life look so different from when I was 30 and still contemplating if I even wanted children. Whilst being a parent of a disabled child has it’s challenges; it can also be incredibly rewarding. We find joy in the smallest of accomplishments, Jensen’s fierce determination means he always finds a way to do something, it just might not be the same as his peers.

What have a learned along the way?

When a life changing event happens, you realise how short life is.  I am now more resilient than I knew I could be. Acceptance is hard, there is more love and light to give but when the dark comes in you have to acknowledge it, not fight it. Life goes on and can still be a happy place. During this time I’ve managed to complete my CIPD qualification, set up a family business with my husband, changed my career and my employer.

As a family we try to stay in the moment. I’ve had to let go of my desire to control everything as I’ve realised that so much is now out of my control. Yes, we have to plan for the future, but we are making each day the best it can be.

Don’t be afraid to open the conversation

If you know colleagues, friends, family that are carers, all I can say is check in, be there, really listen. Navigating this new world can be a lonely place. Don’t be afraid to say the wrong thing, saying nothing and becoming distant is far worse. But also remember that words can hurt.  I was invited to attend a Genetics family therapy session and I was called ‘unlucky’ multiple times. The therapist didn’t appear aware of how what she was saying was compounding the feeling of uselessness I had.

I’ve never written a blog and would never profess to be a writer but what the wonderful HR team at Sweco has taught me is that I can be myself, and that, at Sweco, difference is celebrated. We all have our struggles, and we are in support of each other. If you are out there struggling, please know that support is there, and you will be listened to.