Finding the Sparkles – our journey to finding the joy when life feels tough

Disclaimer Number 1: Life is tough. Any child with additional needs brings a whole load of what ifs, if onlys, and what happens when? questions. And yes, for a long time, we focused too much on those questions. We were in danger of missing the adventures hidden inside a life that turned out so differently from the one we imagined. This is not a ‘look at us we have everything sorted blog’. Read the above again…Life is tough! Do we still worry about these things? Every. Single. Day.

Disclaimer Number 2: Imposter syndrome is real. What right have we got to write this blog? Who are we to show people what we do or to offer any advice. Answer: we are us. We have experienced first hand the impact of hearing other people’s stories and by sharing our story maybe, just maybe we might make the burden feel a little lighter, even if just for a moment, even if just for one person.

We’re parents to a 13-year-old girl with Rett syndrome, and we’ve spent the last decade and a bit navigating a world we never even knew existed. Between us, we’d worked over twenty years in education and had never heard of the four-letter word (Rett — keep it clean!) that was about to change our lives.

For our girl, the reality is that she will likely continue to lose skills over time. She has already lost some she once had.

She has limited purposeful use of her hands, no verbal communication, and as a wheelchair user, she relies on adults for every aspect of her life.

Let me rephrase that, she has a smile that lights a spark in everyone, a personality that will have you in stitches, told Santa what she wanted for Christmas last year via an eye gaze device (she also spontaneously told the Elf he was silly!) and a determination that would put any of us to shame!

So, threaded through the hardship, uncertainty, and emotional exhaustion, which is undeniable, is something we call in our house… “Sparkles.”

Sparkles of joy. Sparkles of uncontainable laughter. Sparkles of pride when the tiniest milestone arrives. Sparkles of a purity of soul that is rare in this world.

The small and big moments that make life a little bit brighter. She was put here to sparkle; and wow, does she shine.

She brings out the absolute best in people. Meet her once, and I challenge you not to smile. Truly, it’s almost impossible. Her younger sister (now 9) shows empathy, compassion, and kindness far beyond her years… because of her sister. She lights up every room she wheels into, and she has taught us more than any classroom or “professional” ever could.

And yes, there are massive barriers. Massive restrictions. And often yet another battle to fight, system to navigate, or transition to prepare for. But something shifted the moment we realised those barriers were going to be there no matter what. So, we decided to stop caring about them and go ahead and do the things anyway.

We started small: day trips, Riding for the Disabled groups, local holidays, and a “what’s the worst that can happen?” attitude.

Did things always go to plan? Nope. Did we try to squeeze into a café that was almost accessible and end up knocking down an entire display of tea bags? Yep. Did we attempt muddy countryside walks, get stuck, and have to haul her and her chair over gates and through puddles the size of small lakes? Yep. Did we misjudge timings and endure her very unique way of telling us she was “hangry”? Oh yes. Did she laugh loudly all the way through her sister’s school nativity? Absolutely. (Actually, I still feel a bit bad about that one!)

But these are the moments we now look back on and laugh. Probably the very moments we once avoided — afraid things might go wrong; afraid we wouldn’t cope. And the funny thing? The more we did, the more we wanted to do.

For a girl who supposedly has so many limitations, she has lived a life full of adventure. She’s been up Snowdon (credit to a much fitter husband than me!), reached the top of a climbing wall, gone canoeing, trekked in the Lake District, cycled around Holland, wandered the forests of Fontainebleau, and even experienced the Alps. We developed a thick skin and perfected the smile we give when people look… and yes, sometimes stare. But those aren’t the moments we remember.

We remember the adventures. The smiles.

The experiences. The family time. In short… the sparkles.

We’ve been inspired by people we’ve met along the way, and by clips on social media. Back then, we wondered how they seemed to have it all together, living their best life while we were just trying to get out of the house on time for appointments. The truth? They were only sharing their sparkles.

If the last decade has taught us anything, it’s this: find what makes your family sparkle, and do life your way. Make memories out of the everyday. A Saturday evening in pyjamas, snuggled under blankets watching Strictly with “special snacks” is a non-negotiable in our house. Fish fingers for Christmas dinner? Do it your way. A 5:00 a.m. disco because that’s basically midday in your world? Do it your way. A big trip or a tiny local venture? Do it your way.

Whatever you choose to do, and however you choose to do it, look for the sparkles. They don’t always appear overnight. Sometimes a single sparkle takes months to show itself. But they do come and over time, they gather, they grow, and they shine even brighter.

And when you’re ready, share your sparkles. Because sometimes a little leftover sparkle is exactly the inspiration someone else needs to help them shine too.