The Teenager turned nineteen yesterday.
My incredible son, who has had to cope with MS from the age of eleven.
Could there be worse timing?
MS was instantaneous for us – no warning, no real preview of the devastation to come. He went away for the weekend and when he came back (picked up by a friend as I was in hospital) everything had changed.
Suddenly he was thrust into a world where his main parent was ill.
I was the mum who had taken him to, and picked him up from nursery, primary school, breakfast club and after-school club. I was there at the sidelines for rugby and sewed badges onto swimming trunks and Beaver’s outfits. I checked over his reading books, helped him build castles from cardboard and sorted outfits for school plays.
I was ever-present and then suddenly I wasn’t. We both had to learn to live by very different rules and it wasn’t pretty. I was in and out of hospital, the Doctor’s, various clinics, alongside coping with an employment tribunal. And there he was, starting High School.
I fitted three courses of Alemtuzumab around his school holidays, specifically booked in for that reason. After my second course, I had 24 hours to get back on my feet and be there for him coming home, not easy with zero immune system.
But we muddled along, and my sofa became the ‘command centre’. I had my blanket tucked behind it and could whip it out at a moment’s notice. I jotted down important points, dates, friend’s names, anything I could to keep up to date with everything that was going on.
For both of us the most difficult symptom was the fatigue. I always tried my hardest to stay awake until his bedtime and a little bit extra, to appear, ‘normal’. Now he is back home for the summer Uni break and goes out for the evening, he says, ‘you can go to bed at whatever time, I’m out.’ And a little bit of me dies inside. I know that he knows that I know.
MS has been a terrible learning curve for both of us, but we got through it. I had friends I could confide in, ask for help from. The imperative was to give The Teenager as normal an upbringing as possible. It didn’t always work out that way and I will always regret that.
Yet now, here he is, a super-confidant young man.
In my blogs I normally whinge about The Teenager (as you do), but today I’m going to say how proud I am of him. He made it easy. His inner strength saw him through the worst.
I’m impressed at his resolute attitude and his sheer enthusiasm for life. In short, I love him to pieces.