The Kindness Keeps Us Going - But Eira's Struggles Never Stop

A lot has happened in the 10 days or so since I wrote here, a period of immense generosity from communities we didn't even know existed, and people we didn't even know. From bake sales and sponsored walks, to an evening of fundraising meticulously planned and executed.

Behind the scenes, in the quiet moments behind closed doors, under the noise of applause and laughter, life has still been raw and relentlessly hard.

Eira has continued to be unsettled, agitated, frustrated in ways she can't always express. And for us, as her parents, that brings its own weight of helplessness and heartbreak.

Some days, the smallest comforts make the biggest difference. Being in the car still brings her peace, the rhythm of the road, the subtle motion, we've taken drives to help her rest, to help her relax.

She's started holding onto toys again, which feels like such a victory. Watching her wrap her fingers around something, bring it close, even sucking her thumb; it's all so instinctive, and somehow, so defiant. She's saying: I'm still here, I'm still trying.

Amongst the victories and the milestones, there are harder things too, the lights are often too bright. She flinches, turns away, covers her eyes with her hands. There's a sensory overload that we don't fully understand, but we see it in her every reaction. We adjust, dim, shield, whatever we can do to soften the world for her.

Every morning, I wake up with a quiet, stubborn hope — that today will be different. That Eira will be standing at the gate of her bedroom door, waiting for us with that spark in her eyes, ready to head downstairs. But then reality meets me in the silence. She’s not there. And as I walk down the stairs to find her, a familiar tear gathers in the corner of my eye — the kind I’ve learned to wipe away before the day begins.

Then there's the feeding tube, just a short time ago, there was almost zero risk of Eira being able to pull the tube out herself, in the last 4 days, she's done it twice! Each time it happens, we hold our breath, gather our stuff, and make yet another trip to the hospital to have it replaced. It's not just the disruption or the logistics, its the emotional toll. The quiet 'here we go again' that sits heavy in the car on the way there. Now that Eira is very much at risk of pulling it out herself, we will be having training so that we can replace the tube ourselves at home, without the need for the dreaded hospital visits.

Medications are a daily juggle - balancing what helps with what and when, watching closely for side effects, and wondering constantly if something new might bring her more comfort. It's a routine full of trial and error, small wins and big unknowns.

And still, through all this, through the exhaustion and the broken routines - we are holding on. Because alongside the hard bits, there's also love. Fierce, protective, relentless love.

We want you to know that every step walked, every cake baked, every mile ridden — it means something far beyond the fundraising totals. It reminds us we’re not alone. That while we’re fighting through the quiet storms with Eira, there’s a community around us, cheering us on, helping to carry what we can’t.

So thank you. For being part of this with us. For showing up. For donating, baking, walking, riding, and for reading this — even when it’s raw.

We are doing all of it — the fundraising, the comforting, the emergency hospital trips, the cuddles in dark rooms — for our girl.

For Eira.