Little Hands, Big Determination: Taking on Tubes, Therapy & Togetherness

This week has been a tough one. Not because of any one dramatic moment — but because of the constant, grinding reality of what life looks like with Eira. A child full of fire, stubbornness, and unbelievable strength. A child who fights hard, and who needs us to fight hard right alongside her — even when we’re running on fumes.

Let’s start with the NG tube.

We’ve lost count of how many times she’s pulled it out this week. She waits for just the right moment — distracted hands, a blink too long — and it's out. Again. And again. And again.

We’ve reached the point where we can’t relax, ever. It’s become a constant state of vigilance — watching her hands, covering the tube, bracing ourselves. We’re physically drained. But more than that, we’re mentally wrecked. The stress of always being on, always being ready, is the kind of tired that seeps into your bones. It’s not just about replacing a tube. It’s the hospital calls, the re-insertions, the planning around feeds, the worry about her getting the nutrition she needs. It’s the feeling that you can’t even breathe without risking something falling apart.

And yet — there’s this part of us that gets it. That even admires it. Because beneath the stress and the exhaustion, there’s this fierce little girl saying, “This isn’t comfortable. I don’t want this. I want control.” And how can we not respect that? She’s not passive in her journey. She’s fighting for herself — in the only way she knows how.

Then there’s physio.

She’s been pushed hard this week. And she’s handled it the way only Eira can: with a mix of resistance, exhaustion, and sudden flashes of unexpected strength. There were tears. There were moments she just wanted it to stop. But there were also breakthroughs — little movements, little wins. Progress that nobody but us will really understand the weight of. And in those moments, even the smallest ones, it feels like we’re watching her move mountains.

But it’s not easy. Pushing her body, cheering her on, helping her through the frustration — it’s a heavy emotional load. There’s pride, always. But there’s also pain. Watching your child struggle isn’t something you ever get used to.

And yet, in the middle of all this — the tubes, the therapies, the constant intensity — we carved out space for family. Real, quiet, human moments. Cuddles that lasted longer than expected. Laughter over silly noises. Soft touches. A moment where the medical noise faded into the background and we just got to be.

These moments matter more than anything. They’re what we hold onto when everything else feels like it’s slipping. They're what remind us that Eira isn’t just a patient or a checklist of care tasks — she’s our daughter. A whole, complex, incredible little person who wants love, connection, and to feel safe in the arms of her family.

This week, she’s shown us — again — that she’s not here to be underestimated. She’s fiery, stubborn, and full of a strength we didn’t know someone so small could hold. And we? We’re tired. We’re worn out. But we’re still standing, because she needs us to be.

We don’t have perfect answers. We’re figuring it out one moment at a time, with love and exhaustion tangled up together. But we do know this: no matter how hard it gets, we’ll keep showing up for her.

Every single day.

Because she’s worth every second of it.