Finding Words : Fearing Silence

The day after I wrote the last one, Eira pulled her tube out twice. A visit from a community nurse in the morning, followed by a visit to Glangwili in the evening, and it was only Monday!

The last four weeks have been intense — a rollercoaster of medical milestones, unexpected hurdles, and the constant thread of raw emotion that comes with watching Eira fight while knowing how fragile her progress still is.

On the feeding front, the conversation around a gastrostomy has progressed much sooner than anyone anticipated. We had prepared ourselves for this being months away, but this is becoming something that is likely to happen much sooner than later.. The procedure will give her a more stable and safer way to be nourished, reducing the risks that come with repeated tube replacement. It’s daunting, yes, as it will involve general anaesthetic but also a relief — a step toward long-term stability.

Alongside this, there has been real progress with her oral feeding. Eira has been managing thicker, lumpier textures with increasing success. Foods we once thought might always be out of reach, the meals she used to enjoy before, are now within her grasp. The hope that milk might no longer be her primary source of nutrition in the not-so-distant future feels monumental, something 3 months ago would take years to happen, and that was being optimistic.

These may seem like small steps to the outside world, but for us, each swallow, each bite, is a milestone we hold with gratitude.

Her speech has also been evolving. More words are coming, and they carry weight far beyond their syllables. Every word spoken feels like a victory, a defiance against the silence that could so easily have taken her. But with each new sound, there’s also that nagging fear: will it continue, will it strengthen, or could it disappear again? That uncertainty shadows even the most joyful moments.

We’ve noticed a significant increase in her eye movements too. She is tracking more, showing greater engagement with the world around her. While we await a formal eye test to understand the full picture, we can’t ignore what we see daily — a spark of curiosity, a connection through movement that wasn’t there before. It fills us with cautious hope.

Physiotherapy remains a cornerstone of her progress. Over the past month, we’ve seen her head control improve in ways that once felt impossible. She is holding herself with greater stability, trying to lift herself with effort and determination. These gains are slow, sometimes frustratingly so, but every session reveals strength returning, piece by piece.

Alongside the hospital visits and therapy sessions, we’ve also made space for days and trips out — moments that remind us life is bigger than appointments and medical charts. We’ve had simple but precious visits to Gnoll Park, where fresh air and open space gave us a taste of normal family time. We ventured to Paultons Park, home of Peppa Pig World, where the joy on Eira’s face was enough to eclipse the anxieties that usually hover in the background.

Perhaps most special was our week’s stay at Ty Hafan. It gave us the chance to recharge as a family — full of cwtches, playtime, and laughter. The family fun day was a highlight, as were the countless opportunities for Eira to enjoy the hydrotherapy pool, where her body could move freely in ways the outside world doesn’t always allow. These moments stitched light into our days, reminding us that joy and progress aren’t only measured in hospital notes but in smiles, splashes, and shared cuddles.

Four weeks doesn’t sound long, but when each day is filled with challenges and breakthroughs, it feels like a lifetime compressed into a short span. We live constantly on that fragile line between progress and setback, between words spoken and silence feared. Yet, even with the ever-present shadow of uncertainty, what stands out most is Eira’s resilience. She is teaching us, day by day, that progress is rarely straightforward — but it is always worth fighting for.

P.s There are plenty of photos in the gallery, and you can also keep up to date on Facebook at Eira's Story.