Flashback

It is strange. One moment it was still real. The next, you surface in the night and understand it was a memory, a dream, not the here and now. Still, it makes the here and now all the harder.

Two children. Two completely different worlds. One always at the centre of attention as soon as something happens, unconsciously favoured in simple, small things. One who fights for attention.

One child who gets help almost automatically, but is sometimes not noticed at all. Who has to fight for independence. Not because nobody trusts him with it, but because so much was not possible, because many thousands of small things could not be taken for granted. Who sometimes also has to fight for independence because adults misjudge what he can do himself. Adults with a picture of children with severe disabilities and rare diseases that does not fit at all. Where sentences are dropped like “If they have no help, they are completely helpless straight away.”

One child who would also love to go to the doctor. Who would also love to get help, even when it is not needed, and is incredibly proud to get speech therapy too. To be seen as well. To get attention for once without being loud. Who demands breaks on bike rides, just to decide for once when it is time for a break.

Two worlds. Two lives. Both at the same time.

As opposite as day and night. As opposite as sun and moon.

One child sometimes terribly grown-up. More reflective than many adults. Constantly watched, constantly assessed, constantly self-critical.

I run slower than everyone else.

Constant comparison. Constant proof. But motivated every day, sometimes more, sometimes less. Cheerful every day.

Ready every day for new adventures, for wind, waves, rain and sun on the face. People who are glad about less therapy.

A village full of doctors, therapists and other people who are there. Rules that do not quite apply, because you have been coming since you were a baby.

One child loud, self-confident, assertive and proud of her brother. Independent without limits.

Nursery? When can I go there on my own?

Opposites. Every day. Every night.

Accompanied by decisions that… change lives, for better or for worse. Decisions that take lives or improve them. Nobody can say what is right. Whatever you do, someone comes along and says that this or that is not right.

Decisions that break every risk matrix. That would bring any leadership team to a standstill. That you have to make anyway. With no clear direction and no clear opinion, where you have to take a side. Where only later will you see what was right and what was wrong.

That is where you are at 4 in the morning. Alone with all your thoughts. With the pressure of decisions that change lives. Your own, your children’s. For all time.

That weighs more heavily than all the decisions from years in the emergency services. The difference: you are alone. Nobody comes to rescue you. Nobody comes to help you.

People come who make every day even harder for you. People who make decisions without even roughly understanding what they are deciding about. People who think it is fine that caring parents (and relatives) have to work more and care more at the same time, and who think the cuts are fine too. People who see respite care, school support assistants and the like as a cost factor. Who believe caring parents only need more “incentives” to work more. Who believe no relief is needed. Who believe school support is a cost factor to be optimised. People who believe there is no need for exchange between school support assistants and parents.

Everything becomes a fight. One that stirs everything up, again and again. Digs everything up, again and again. Every story told a thousand times. Every trauma lived through anew, every single one, again and again. Like a never-ending nightmare.

Welcome to a world where everything becomes a luxury.

Attention.

Relief.

Participation.

Time.

Quiet.

Everything.