What We've Learned (For Families at the Start of This Journey)

This blog exists because Mummy and Daddy wanted other families to find this journey a little less scary. So here's the post we wish someone had handed us at the start — everything eight years has taught us.

Look after the parents, not just the child

PTSD is not just for soldiers. Many NICU parents go into survival mode after the sudden birth of their baby, with no time to process what's happening. Mummy was diagnosed when I was a toddler, and EMDR therapy (Eye Movement Desensitisation and Reprocessing) was life-changing for her — it let her process everything so she could be the best version of herself for me. We share this to break the stigma: if you're struggling, reach out. It's not weakness, it's maintenance.

And when respite comes — take it. The first time Mummy went away overnight in a year, she slept a full night without monitors, and Daddy and I had the best boys' weekend of pizza and video games. Everybody won.

Never accept the ceiling

At 3 days old I was predicted to be GMFCS level 5, unlikely to swallow or talk. A walking frame was called "a waste of money" and "setting expectations too high". Mummy's response was to find a new physiotherapist. I now run in that walking frame.

The lesson isn't that doctors are wrong — most of mine are brilliant and we're forever grateful to the NHS. It's that predictions are not prescriptions. Mummy and Daddy never say I can't do something. They say "give it a go" — and then we find my way of doing it.

Intervene early, build your team

My CIMT course at 15 months old is why my left hand works. Early intervention compounds like interest. And find your people: we've had the same physiotherapist since I was 18 months old — she fought for my surgery alongside us and has been there for every high and low. One professional who truly knows your child is worth ten who've just read the file.

Live in the moment

I once asked Daddy why grown-ups say "live your best life". He explained that our lives can be unpredictable, so we have to enjoy the good times. We keep a packed hospital bag on the landing because we're regular emergency visitors — but that same fact is why we say yes to the ferris wheel (four go-arounds), yes to the mud pit, yes to the snow day, and why every birthday gets celebrated BIG. The bag on the landing isn't sad; it's the reason we're grateful 🥰.

The practical bits we'd tell any family

• CEA card (£6/year, over-5s, proof of disability): free companion ticket at 90% of UK cinemas.
• Seated chair scales are the only way to weigh a wobbly child accurately — and most GPs don't have one. Ask, push, campaign.
• Branded kinesio tape — we learned about non-branded reactions the itchy way.
• Children's walking sticks barely exist in the UK — start hunting before you need them; we waited five months once. (Flexyfoot now make child sizes.)
• Send outgrown splints to charities that repurpose them for children in countries without orthotic services.
• Phone ahead to venues. Our best days out came from places that adapted before we arrived; our worst from places that wouldn't. Most people want to help — let them.
• Say thank you loudly. Kindness multiplies when it's noticed: the shop that engraved a puppy tag for free, the hospital volunteer who kept sweets aside, the hotel that found us the right room. Celebrating kindness brings more of it into the world.

And finally

When Mummy fell over the hospital bag on the landing, it reminded us our family isn't the same as everybody else's. But living differently has given us something extra too: a greater sense of gratitude. We know to live in the moment — and honestly? The moments are brilliant 🎉

Keep reaching for those stars ⭐️