Why I’m turning Duch Dad into something more than just a blog.

I’ve been asked a few times recently why I’ve decided to turn my Duch Dad blogs into a book. The answer is actually quite simple, although the story behind it is anything but.

My hope with my book is to create something that could offer a little help, reassurance and most importantly, hope to parents coming to terms with a life-changing diagnosis for their child, whatever that condition might be.

Part memoir. Part reassurance. Part survival guide to a life you never expected to live.

That’s probably the best way I can describe what I’m hoping to create. A book told through my own experiences of fatherhood, the challenges, the mistakes, the lessons learned along with the occasional bit of humour!

No Parent Should Have to Feel That Alone

One thing I’ve always said ever since Alfie’s diagnosis in February 2018, is that no parent should have to go through what we went through.

Following tests and weeks of waiting, it was confirmed in a telephone call that our three-year-old son had Duchenne Muscular Dystrophy, a life-limiting condition that would change the course of his life and ours forever, and then?

We were told that an onward referral would be made to Manchester Children’s Hospital.

That was pretty much it.

Now, I appreciate that delivering news like that can never be easy. There’s no perfect way to tell a parent that their child has a life-limiting condition. No magic words that will somehow make everything better.

But surely there has to be a better way than that?

It doesn’t take a specialist or someone with years of medical training to simply hand a parent a leaflet, provide a telephone number or point them in the direction of an organisation that might be able to offer a little support.

Just something. You’ve been given the most devastating news of your life and you’re then left to work out what on earth you’re supposed to do next!

Left to Find Our Own Way

Instead, we had to find that support ourselves.

Believe me, when your head is spinning with questions, fear and uncertainty, trying to navigate a world you know absolutely nothing about isn’t particularly easy.

I’ve often wondered how many other parents have found themselves in a similar position. Not necessarily with Duchenne, but with any serious or life-limiting diagnosis.

How many have gone home, sat in silence, opened Google and typed in the name of a condition they’d never even heard of a few hours earlier?

Ironically, we’d actually been told not to Google ‘Duchenne’!

Now, I understand the reasoning behind that advice. We all know how dangerous Dr Google can be when you’re already frightened.

But when you’re told not to look for answers yourself and haven’t been given anywhere else to find them, what exactly are you supposed to do?

The Book I Wish We’d Had

If I can create something that might one day be handed to a Mum, Dad or carer in those early days, something that says you’re not the first person to feel this way, and that you don’t have to figure everything out on your own, then perhaps something positive can come from what we experienced.

I can’t offer medical advice. I certainly don’t have all the answers. Even after all these years, I’m still learning myself but I can share what life has taught me.

The mistakes I’ve made. The things I wish I’d known. The people who’ve helped us along the way and the moments of happiness, laughter and absolute chaos that have continued to make our family life what it is.

A life-changing diagnosis doesn’t mean the end of making wonderful memories. Sometimes it just means the life you imagined takes a very different route. Most notably at this point, you’ll be told about Welcome to Holland

If this book could one day be handed to one newly diagnosed parent / carer and help them feel a little less alone, then it will have achieved everything I hoped for.

Perhaps my ambition goes a little further than simply seeing my book on a shelf.

I’d love to think that one day it could become something that hospitals, paediatricians, specialist nurses and family support organisations could actually hand to parents following their child’s life-changing diagnosis.

Imagine walking out of that appointment, frightened and uncertain about what the future holds, but having something written by another parent who has experienced those same emotions themselves.

Not a medical textbook. Not a list of things you should or shouldn’t do. Just an honest account of learning to navigate a life you never expected, with a little reassurance, humour and hope along the way.

If someone had handed me that book back in February 2018, I know I would have appreciated it.

That’s the real reason I’m writing it.

A Little Help From You Lovely Lot!

To give myself the best chance of getting this book published and reaching those families, I need to start building a wider readership.

Hence why I’m currently spamming you all with so many posts on social media!

Apologies in advance, but there’s a method to the madness. Well, that’s what I’m telling myself anyway!

If you could follow my Duch Dad Facebook, Instagram and TikTok pages, subscribe to the blog or simply share my writing on social media with someone who might connect with it, I’d be incredibly grateful.

I’m not asking you to buy anything (YET!!). Please just to help me get these stories out there and hopefully, one day, into the hands of parents who might really need them.

Thanks, as always, for your support. It genuinely means a lot. 💙

Kieron x