Exhaustion Overshadows the Milestones : Living Between Progress & Setbacks

Its been a while since I sat here and had the time, the energy, and even the motivation to write anything. If it wasn't for the continued, overwhelming support from family, friends, and even members of the community who didn't know us or Eira 6 months ago, I probably wouldn't write anything at all. It is because of this support, that sharing Eira's story, and giving a glimpse of the effect this has had on our daily lives, albeit a glimpse to most, is much easier.

The past 6 weeks or so seemed to have just moulded into one. With ups, downs, and everything in between. Some days, the milestones feel like they should be everything, like finally getting a chair that is suitable for Eira, reaching out for things and holding on longer and with more purpose, the joy of trying lumpier foods with no fear. These are the moments we've fought for, the ones we're told to celebrate.

The truth is, the exhaustion overshadows them. The sleepless nights blur into one another. A cough turns into a hospital visit. Seizures, non-existent for months, crash back into our lives without warning. And then theres the NG tube, out, in, out again, leaving us on edge 24/7.

Living after ANE isn't just about progress. It's about living in the gap between progress and setbacks, where every win is met with a fear of the next loss. We are extremely grateful for every small step forward, and every win that Eira is achieving is beyond anything the professionals thought possible back in April, but some days, it feels like the bad outweighs the good.

When the chair finally arrived, it felt like more than just another piece of equipment being delivered - it felt like a piece of her life was handed back. Up until then, we'd made do ith whatever we could, never quite finding something that supported her properly, always worrying about her comfort, her posture, her ability to join in. The first time she sat in it, we saw the difference instantly. Her body was held the way it should be, her head supported without slipping, her little frame finally relaxed instead of fighting to stay upright. Suddenly, she wasn’t on the sidelines — she was joining in with us, part of family meals, eye level with her toys, sharing space instead of being propped up awkwardly. It may look like just a chair to anyone else, but to us it was freedom, dignity, and a glimpse of normalcy that we’d been craving for so long.

The move to lumpier foods has been another milestone we’ve clung to. Feeding has always been complicated — a mixture of worry, patience, and hope, overshadowed by the NG tube and the fear of her struggling. But now, slowly, she’s beginning to explore textures that once seemed impossible. A small spoonful of something thicker, a hesitant chew, a swallow that makes us hold our breath before cheering quietly. Each attempt feels monumental, not just because of what she eats, but because it gives us a glimpse of a future where food isn’t only about survival — it’s about pleasure, family, and togetherness. Mealtimes have become moments where we’re not just monitoring and measuring, but actually sharing. Watching her tolerate those lumpier bites is like watching her reclaim a piece of her childhood that was stolen away too soon.

The seizures feel like the cruelest kind of setback because they don’t just take from her in the moment — they take from all of us long after they’re over. For months we’ve lived without them, slowly letting ourselves believe they might be gone for good. We started to relax, to feel lighter, to celebrate progress without the constant shadow of fear. And then, without warning, they returned. Watching her seize is something I can’t put neatly into words. It’s terrifying and helpless all at once. In those moments, I find myself staring at the clock, at the rise and fall of her chest, just willing it to stop. And when it does, the relief is swallowed almost instantly by dread — dread of the next one, dread of what damage may have been done, dread of how it might undo the fragile gains she’s made. They leave her exhausted, drained in a way no amount of rest seems to fix. The sparkle in her eyes dulls, her body seems heavier, and the progress she was making feels like it’s been paused — or worse, erased. For us, they leave scars of their own: the sleepless nights replaying what happened, the anxiety of listening too closely for sounds in the dark, the constant vigilance that never lets us switch off.

Seizures aren’t just medical events. They’re intrusions. They barge in, uninvited, ripping through the small slices of normal life we try so desperately to hold together. They remind us, brutally, that we’re never really safe from the grip of what ANE has left behind.

The NG tube has become one of our biggest love–hate relationships. On paper, it’s simple: a thin tube that keeps her nourished, hydrated, and safe when eating isn’t enough. In reality, it feels like a constant battlefield. She pulls it out with such determination, as if her little body knows it doesn’t belong there. Sometimes it happens once in a while, other times it’s several times in a single day — each removal setting off a chain reaction of panic, frustration, and exhaustion.

Every time the tube comes out, the clock starts ticking. We know she needs it back in, but getting it there isn’t easy. It’s uncomfortable for her, it can make her gag, it sometimes feels cruel — and yet, without it, the risk of her not getting what she needs is too great. For her, the NG tube is a source of irritation, something foreign she can’t ignore. For us, it’s a lifeline tangled up in guilt, because keeping her alive means putting her through something she clearly hates.

It’s such a small thing — just a piece of plastic taped to her cheek — but it looms so large in our daily life. We plan around it, worry about it, watch it constantly, knowing one tug could undo everything. It turns simple routines like feeding or bedtime into high-stakes events. And the truth is, it wears us down. The NG tube doesn’t just sit in her nose; it sits in our minds, a constant reminder of how fragile her progress is, how far we still have to go, and how much of her care is dictated by medical equipment instead of choice.

It’s never just a tube. It’s survival and struggle tied together.

What no one tells you about life after ANE is that it doesn’t neatly move from crisis to recovery, from hospital bed to happy ending. It lives in the middle. We exist in a space where progress and setbacks collide daily, where joy and despair aren’t opposites but companions. One moment we’re clapping because she’s managed a spoonful of lumpier food, the next we’re grabbing bags for yet another dash to hospital. The highs are real and they matter, but they’re constantly tempered by the lows that sneak in without warning. Living in the middle means constantly adjusting expectations. We can never settle into comfort, never assume we’re past the worst, because experience has taught us that stability can vanish overnight. Every new milestone comes with a shadow of fear — will it last, or will it be taken away? Will this progress hold, or will the seizures, the infections, the exhaustion undo it all? It’s like trying to build sandcastles as the tide creeps in: you’re proud of what stands, but you know it can be washed away in an instant. And yet, even in the middle — even in the uncertainty — we’ve tried to live as actively as possible. We’ve made space for family days, for play, for moments that remind us we’re more than just medical notes and hospital beds. These moments don’t erase the exhaustion, but they do give us something to hold onto. Over the next week, we’ll be sharing more of these glimpses of daily life, the good and the hard, on Eira’s Story on Facebook. Because if there’s one thing this journey has taught us, it’s that both sides of the story deserve to be seen.

The middle is messy, and it’s exhausting. But it’s also where we find our strength. Because despite everything, she keeps moving forward in her own way, and so do we. This is why exhaustion so often overshadows the milestones — but it’s also why those milestones, however small, matter more than ever.

Every new word, every bite, every milestone is a gift. But they also make me ache for the Eira we had before - a reminder that progress and grief will always walk hand in hand.

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There are lots more photos of recent weeks in the Gallery