My seventh official MS-versary is looming.
The Teenager’s 20th Birthday isn’t far behind.
We got this far, and I still can’t quite believe it. Who would have thought that broken, miserable, pity-party-for-one person would morph into, well, me? Us?
We did it. All I wanted was to see my son safely into the next stage of the life of his choosing, not one imposed on him by this illness. .
He won’t have to tell people he never knew his mother, can’t remember her apart from a few vague snapshots; as I did with my dad who died long before the incredible MS treatment options we now have today.
Yes, we still went through hell. Mortality and High School don’t tend to go together, especially when you’re the single, main parent. Corners were cut, but the absolute commitment to him remained. I did my absolute best and he has, after a few shaky starts, turned out to be a young man I am incredibly proud of.
Of course, like me, he got angry. Angry that I was sacked, angry that I couldn’t find a new job after I ticked that disability box, angry that society turned its back on me . And most of all, angry that this illness had interrupted his childhood.
We had our battles, as we got used to our new roles. His once energised parent was now useless and tired, so, so tired, but he was never my carer. I hope I was always emotionally present for him even when my body didn’t follow the protocol.
I planned my Lemtrada infusions around his brief holidays with his father, trying my hardest to appear rested and healthy when he returned home two days after I was discharged.
Now he is at University, he is forging his own path. You could say my job is done, I got what I wished for all those years ago, and it is. The relief is immense, although I know his years in High School were not without MS dramas.
My son is not my confidant, I have friends for that. He is not my carer, I would employ one if I needed that. He is a young man making his own way in the world.
Some people say I’m just lucky that I was able to access brilliant treatment and I completely agree with them. I took the riskier, quicker option that I was fortunate enough to access and why wouldn’t I? Who else would pick my son up from rugby training twice a week? I accepted the side-effects (Graves, yep, am fat), but I would do it all again in a heartbeat.
I’m glad my son will not be taken to see my body when he is four years old, and forever wonder what he would say to me, should he have the chance. I’m glad my son grew up with me at his side, no matter what my disabilities. And I’m glad my son has grown up to be such a compassionate advocate for disability rights.
Above all, I am glad that he had you guys at his side – you’ve watched him grow up, you’ve given advice and you’ve comforted him and I cannot thank you all enough.
So, I may struggle every single day, but I will still struggle every single day and I will still struggle to continue doing so, no matter what comes my way.