MS is hard enough on your own body and soul, but witnessing your child coming to terms with it in a parent is heart-wrenching.
Up until he entered High School, me and The Teenager did a whole lot of things together; I was forever picking up leaflets, magazines, nabbing numbers and ideas from flyers.
We fought dinosaurs, made shields in a castle and painted pottery.
I sewed badges on swim bags, then faithfully unpicked and re-sewed them on to new bags. I bought uniforms, day trips and packed the lunches.
I stood at the rugby sidelines weekend after weekend, freezing cold, following him to tournaments miles away, in the rain, without ever mastering the rules of the game. I picked him up after injuries and faced the long journey home, but with a medal or mini-cup clasped in his hands as he fell asleep in the back seat.
I’m so glad I had that time as everything was set to change.
Just as he put on his brand-new High School uniform, MS hit. His once-active parent was more often than not going through relapse after relapse.
We factored in three Alemtuzumab treatments to coincide with his summer holidays – after coming home with no immune system, I had less than two days each time to be back to ‘normal’ after he spent time with his father.
It takes at least a month to recover an immune system.
The Teenager saw a lot and he didn’t like it – the enforced sleep, the early bedtimes of his main parent, when I should have been the one getting him to sleep.
The utter fatigue and lack of immune system floored me. Luckily, kind parents filled in a lot of gaps, taking him to rugby, standing in on Parent’s Evening, inviting him along to sun-drenched trips to the beach.
But I cried; it should have been me. Yet I was so tired, I couldn’t get my head around it. Instead, I tried to ‘stay present’. If I could not move from the sofa, I would at least try to remember everything that was going on.
And now we have The Teenager at University, having the absolute time of his life.
It’s not just thanks to me, it’s thanks to friends and family, everyone who has ever followed him on my blog, or who has met him in real life and chatted with him like old friends, and to everyone who has ever made him feel that he is not alone.
Significant people may be absent from his life, but he knows that he has a whole support network to call upon.
Watching him at an MS filming session last weekend, I was stunned to hear him speak so coherently and poignantly about his experiences and as soon as I can, I will share it with you.
In 2012, all I asked for was to be well enough to see my son off to University. I firmly believe that thanks to everyone here, he made it.
I certainly didn’t do it on my own.