Preparation for adulthood

Something I was never prepared for when I became a Mum was the gut wrenching feeling of seeing my child physically growing up, while knowing how vulnerable he still is.

Like so many others, the Dude is non verbal. He communicates through sign language and facial expressions. Those of us who know and love him understand him without issue but not everyone can.

Currently in the throws of puberty and medication changes means that seizure control is non-existent, and as we face winter and the inevitable chest infections and battles to keep him well it does rather feel like the trauma’s of years past are bubbling up to the surface.

Safe to say, this is the raw side of parenting.

In the space of the last month we have a meeting with his school teachers around preparation for adulthood, and today we have been chatting with his palliative care consultant regarding starting the process of transitioning to adult services.

Obviously, this is not something that will happen quickly, but just the fact that we need to be talking about it when he is only 13 has come as a shock and, I will be honest, I am not ok.

As I sat with his Dad nursing a coffee after seeing his consultant I honestly couldn’t say how I was feeling. Living on the edge for 13 years, managing each crisis as it comes, well, it leaves a mark.

There have been many times when we didn’t dare hope that our boy would get to this stage let alone that we would be talking about his future so positively. I do not do well with change and the prospect of moving from the comforting, safe relationships with the consultants who have been walking this journey with him since his birth to adult services is genuinely distressing, while at the same time seeing our boy having the chance to grow up and become a man is incredible.

One thing is clear. I need to find some better coping mechanisms because there is not enough coffee in this world to help me get my head around all the changes that are coming!