Summer 2024
Spring 2026. I'm just tired and exhausted. It's been well over two years of constant strain.
It's the summer of 2024. A motorway service station somewhere on the North German plain between Hamburg and the Ruhr. End of the summer holidays.
Summer holidays that, after months, had finally felt a little lighter and more carefree. Fewer problems. More life. Then comes the sentence.
Dad, I can't get out, my leg hurts too much.
The lightness of summer was gone. The reality of the past months had caught up with us again.
March 2017
My son was born prematurely — among other things, with a rare condition of the spinal cord. The first operation at six months, the second (and the first on his back) at one and a half years.
Around it: physio, occupational therapy and the attempt to live a normal life.
Starting school
School began. After all the challenges, kindergarten had been good. He already spoke English, was curious and looked forward to every new day.
Sadly, after six months, the whole thing took a heavy turn. He was getting worse and worse. The search began… endless doctor's appointments, tests and attempts at therapy.
Attempts at explanation, diagnoses that explained nothing, brought no solution and made the days harder rather than easier.
Advice that led to arguments, tears and a lot of unfairness.
From a normal life we were further away than we had ever been. Two small children, one of them feeling worse and worse. Needing help, with nothing helping, and a system that leaves you alone.
Helplessness. Despair. Standstill.
The two of us both working: not feasible for months.
Pushing work into the edges of the day: barely possible any more. Exhaustion.
Then came the summer holidays. Finally space and time and fewer problems. Two children doing well. Enjoying the waves, the beach, the campfire with stick bread. Being children. Being allowed to be children.
And there we are now. At a service station. With a few more hours and many months ahead of us.
More tests, diagnoses and advice followed.
Carnival 2025
After more low points. Somehow we made it this far. How? No idea. Alone, in any case.
One thing is clear: having a sick (severely disabled, care-dependent) child makes you lonely.
It doesn't surprise me. When even an hour's drive in the car means the following days don't work because everything is worse afterwards. When you have to cancel spontaneously because nothing works any more. When the calendar is only filled by other people — with therapy, doctor's and clinic appointments. When life only revolves around one single thing.
Moselwal: I handed over day-to-day operations in 2024. On a good day two hours' work, with a lot of luck four. A life far from what actually gives me joy.
Then the MRI that was supposed to change everything. Recommendation: another back operation.
Immediately the fear is back — that something might happen again. Another emergency at extubation.
It would take another three months until it could finally happen.
In between, a quick dose of German bureaucracy — and not a small dose. Days and weeks filled with applications and appointments. The kind nobody wants. The kind that could bring help, but doesn't have to. The kind that does, however, leave you with one clear conviction: this system isn't designed to actually help and to compensate for disadvantages.
Documents you have to submit X times, to the same authority. Applications don't count as received when you send them in, but only when you ask about them.
Disagreement
Rare with conditions doesn't only mean nobody you meet on the street knows about it — doctors and therapists don't either. The result: sometimes people prefer to look for something that could explain everything but isn't a rare condition. That makes a lot of things look easier, but solves nothing.
Once all of that is past us, it's time. The operation is coming up, and because it's all so lovely, it turns out to be more than one issue to operate on — so the day before the surgery, everything is rescheduled.
So we sit there the next day for eight hours, waiting. Four hours for the short, long-planned op. 120 minutes for the spontaneous one.
Where do the two extra hours come from? Well… estimates aren't only inaccurate in software development.
14 days
Three days of strict bed rest — YouTube has never been more boring.
Seven days in hospital… seven days at home, never has anything been more attractive than just being at home.
But the challenges kept coming. Until the summer holidays no school escort, and at the same time no carrying his school bag. But that too was managed, with a lot of effort from the class, the teachers, the after-school carers.
Tired. But cheerier, slowly speaking more again. With a therapy schedule that grandma Herta would be jealous of — if she knew it.
Summer holidays 2025
The North Sea. Beach. Waves. Dunes.
Everything is lighter. It's busy, there are a thousand appointments and unfinished tasks.
Life is different. It has changed me. It has changed my son. It has changed all of us.
A lot more is going to change.
Anyone who believes the social system is set up to support people also believes that lemon butterflies fold lemons.
It continues at some point… in another part.