How Kids Handle a Chronic Condition
I had my child after my MS diagnosis.. I decided quite early on to tell my child, not in an overly grand, dramatic way but to covertly slide it into conversation when he was old enough to listen, which in my case, was when he was about five years old. I wrote last week about how you tell your child, but it really depends on the maturity of the child. I didn't come out right away and say "Okay, little Jimmy, I have MS!" No, I decided to slip it into conversation with things like "Mummy can't find the words, silly MS brain!" "Mummy's hand has gone all tingly, silly MS hand!"
When he was six, I took him to an excellent workshop in London for families where at least one parent has MS and the children quite young (see the brilliant Digesting Science). He was just on the cusp of eligibility but as he went through the activities, he dazzled all of the young doctors and participants. He took everything in and on his way home, told me how much he had learned. In the weeks that followed, there were a lot of questions, some quite difficult but we managed together.
One day, a few months ago, he, my husband and I were having a game about what we are good at. It was supposed to be a positive reinforcing game about strengths and what we loved about each other. Sounds good on the surface, doesn't it? When it came to me, my seven year old said "You're good at sitting on the sofa and watching TV, and lying down."
Heartbroken doesn't even cover it!
The thing is there was nothing malicious whatsoever in his comment. It was very matter-of-fact and completely unfiltered. Young children often have no idea of the impact they have and don't know how to connect the dots, so everything has to be very literal and explained to them. I knew all of this, of course, but I still felt very hurt and hard done by.
Not wishing he see me cry, I escaped to the bedroom for a quick sob. Then I had what I can only describe as a mini angry meltdown - Why can he not see what I do for this family? How can he not see what I go through every day? Eventually, I realised I do too good a job of keeping the bad bits of MS from him and that I'm not very good at blowing my own trumpet about the things I do. In fact, one could say I'm pretty crap at it. It wasn't his problem, nor was it mine, however something had to be done to increase his understanding.
So I decided that I would talk to him more openly and throughout the week, I'd get him to remember the good things about what we do together. This has worked really well and every day, I see a little more understanding grow in him as speaks to others about my MS ever more confidently.
Many people, including his teachers, notice how empathetic he is. He cares about others so on balance, I think I'm doing a good job.
PS. A little while after my mini meltdown, he came into the bedroom and handed me the note above, telling me how sorry he was to upset me and how much he appreciates all I do for him. What mother can ask for more?!
How have your children been with your condition?
