Being told that my son has a brain disorder called Lissencephaly in a cold doctor’s office was painful.

Being told that my son will never eat, sit, or walk on his own was excruciating.

But being told that there is no adult in the whole world with Lissencephaly, because no child becomes old enough to be an adult, digesting that information as a new mother was beyond all bearing.

What did I do?

I went through the different phases of grieving.

I denied that this was happening. I was angry with the doctor who told me.

Thinking about it six years later I am still furious with her.

I was depressed and extremely sad about all the things I am never going to be able to do with my son.

But at the same time I am pleased about the things he learns.

I am extremely thankful about the love he gives me every day. And I have accepted that I cannot change the fact that he has Lissencephaly.

It is what it is and at a certain point you have to face reality and make the best of each situation.

I take one step at a time.

My son is six years old now and goes to school.

He loves the noise there and that the teachers challenge him every day. He has become older than the internet predicted he would.

He learns things, he laughs and has fun. We take each day as it comes.

We go to therapy and do things he loves, like horse riding or swimming.

Friends and family tried to comfort me by telling me that he will be just fine.

I hear so many miracle stories about kids with special needs which fully recover.

Colleagues tell me about a therapy in Hungary which has been very successful.

Or that the therapists in Poland are so much better than the therapists in Germany.

About a friend of a cousin’s friend who knows a doctor who gives very special treatment in England.

Sometimes it is overwhelming.

Don’t get me wrong, I am grateful for all the suggestions.

However with time I developed a kind of radar system. It lets me filter the flow of information into “not worth looking at” and “worth researching further”.

A good friend told me once that I cannot know for sure that my son will die.

But I know for sure.

I need to deal with the fact that he has a deadly illness. I cannot live in denial.

I have to live with all the “side-effects” of his brain disorder. 

Naturally a small part of me hopes that the diagnosis is wrong, that he will outlive me. And another part of me thinks about the songs which will be played at his funeral.

Am I a terrible mother thinking such things?

I don’t know. It’s the only way to deal with the future for me.

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