MS hit our little family of two when The Teenager had just started high school.
Up until then, I had been an eager, hands-on parent, the type that ‘helps’ their child create a magnificent castle from nothing but empty loo rolls and a glue gun. Or stands at the sidelines for every rugby match, cheering on each side (not quite knowing the rules of rugby).
I washed muddy kit, trekked out twice, three times a week to deliver him to various activities and pick him up again. I filled in the homework book sent home, listened to him reading, watched him writing. I went to Christmas discos, Christmas concerts, parents evenings, talks about transitioning to high school. And I always made sure he had £1 for non-uniform day.
Dropping off at the drop off
High school was different and so were we. At the height of my worst relapses, my good friend stepped in for me, going round each of The Teenager’s teachers at parent’s evening, despite having four children of her own. She delivered detailed reports back to me and I thanked her, then cried endless tears.
Life shifted and I had to shift with it, so I put strategies in place. I made sure I got home an hour earlier from work than school finished so I could sleep, setting my alarm clock plus reminders. In that way, I could be alert and interested when he crashed through the front door, full of tales of his day. The same old me.
Rugby tournaments were difficult, as they were normally miles away and I was a nervous driver at that point with the increasing nerve pain, plus the fatigue was poleaxing me. I spoke to the club leader, the same person I had got on really well with just a year earlier. I explained my predicament, asked for help with lifts and she said the fatal words, ‘but you look so well?’
What’s hot and what’s not
Something had to change. As The Teenager started walking to football, rugby and his friends' houses as he got older, I found it was more important to keep track of what has happening in his life rather than be there for lifts.
Even in my deepest, darkest relapse, I was able to scribble down names, things that had happened and all the rest. Someone once told me, if it’s important to your child, no matter what you think of it (i.e. rugby, a fall-out with a friend), then it’s vital you show an interest. I got to know the intricate ins and outs of The Teenager’s friendship circle. I could interject, mention something from a while back and he would be impressed with my insight. And that’s the thing. I wanted to be there for him, involved in his life, but at a distance.
Being present in his life MS
He wanted to push me to the periphery of his life. Fatigue, pain, fear, all worked to separate my life from his, just when he needed me the most. By remaining present and there for him I was able to be the best parent I could be.
And perhaps, with this amount of thought and planning, us parents with MS go the extra mile, despite MS conspiring against us? The good news is, I have a very confident, happy and exuberant Teenager heading off to uni next week.