Day 36: Running on Empty

Morning Whistle Chaos

The tiredness is not going away. I slept again till 8.30am but still feel awful. My spoons have well and truly run out. Summer and River were on their iPads for the morning while I did my usual clean-up and second breakfasts.

Summer went to make her bed and found an old whistle. “I don’t want this anymore.” Before I could say put it in the bin, River had spotted it. It’s now River’s whistle. Tricky one, because blowing has always been hard for him, it’s one of his OT targets. We’ve tried bubbles, straws, candles but he never really managed it. But a whistle? Oh, he can blow a whistle. Loudly. All morning.

A Doctor’s Detour

I had something booked for late afternoon (booked months ago) so the plan was iPads, TV then head out. But I messaged the doctor about Summer’s asthma, expecting an appointment sometime next week. Nope. “Can you come in the next 30 minutes?”

No one was dressed. But you can’t complain when you’ve got a good, attentive doctor. Yesterday’s clothes were hurriedly thrown on, teeth quickly brushed, inhalers shoved in the disgusting day bag and off we went.

River does not like the doctors. He remembers his injections. “Summer is sick, Summer needs a doctor.” That worked… until it didn’t. I bribed my way through with shop distractions and somehow we made it. Summer’s fine, new inhalers and steroids to tide her over.

The Unpredictable Bus

Back home for lunch, washing hung out, a quick shower, clean clothes then time to head for our outing. Today was Kew Gardens for their SEND session.

The bus to Kew is famously unpredictable, we even have a framed photo of it at home. So I left plenty of time. Naturally, it showed up instantly with no traffic. Not ideal. River does not wait and we have a specific timed entry slot.

Summer and I played the “walk very slowly and make random pointless stops” game. It worked. He looked at birds, the lake, though he stayed in his pushchair – maybe a bit overwhelmed. Still too early, so I tried the snack option. Ice cream.

£12 later, we had three barely touched ice creams – too cold for you know who and then the rest stolen by a wasp. At this point, I was kind of ready to just go home.

Into the Gardens

Sadie arrived just in time to bring a bit of energy back into the day. We wandered the gift shop (Jellycat prices: horrifying) and finally it was time for our slot.

The Children’s Garden at Kew is stunning. You enter through a wooded walkway that leads to a 4m high canopy walk wrapped around a 200-year-old oak. River was out of the pushchair and off.

At first, I followed then stepped back to give him freedom. The garden has four sections: Earth, Air, Sun, and Water. His favourite? Obviously, Water.

Still, he spent ages in Earth too. It has a huge sandpit with climbing rocks, slides and little huts. I was so impressed with his climbing and fearless sliding. Maybe all that water park practice has paid off.

The staff were brilliant. They’d set up sensory activities but didn’t push, just quietly left them around. Summer instantly made new friends (of course) which gave me space to chase River. At one point, I lost him – 40 tennis courts’ worth of garden, after all. But I wasn’t panicked like I have been before. I shouted, searched, trusted he’d loop back. And he did.

The Water Garden was heaven for him, climbing stepping stones, watching bamboo water channels trickle down. He could have stayed forever.

The Final Stretch

We stayed the full hour and a half, even through light rain, which didn’t dampen our time (excuse the pun) Summer was already begging to come back before we’d left.

Then came Operation Keep River Awake: pasta as we headed for the exit, fruit while waiting for the bus, phone for the ride home. And it worked. We were through the door, shower, teeth, bedtime story, lights out by just past 7.30pm. Success.

Summer showered and is sat at the dining table, trying to sew a little mouse Sadie bought her. One of many craft projects, which I’ll be impressed if she finishes.

Broken

And me? I think I’m done. Day 36 and I might be broken. My body aches, my brain is foggy and I need a break. Thirty-six days is a long time with no real pause, no time away from River. I love him fiercely but it is relentless.

I don’t know how long my body can keep pushing through. Will my EDS decide it’s had enough and shut me down, just in time for me to return to full-time work? That’s the thought that keeps circling in my head. The clock is ticking on the holiday and instead of feeling restored, I feel like I’m running on fumes.

I”m proud of myself for taking them today because I really didn’t want them to miss out. I just hope it wasn’t the last spoon of the week.