Jenny My daughter and I play a game called ‘Would you rather?’ – think along the lines of ‘would you rather have pizza or ice-cream?’, ‘would you rather have no teeth or no eyebrows?’ or, the most recent one, ‘would you rather have a nose or no eyeballs?’… Hmm, not that difficult a decision!
The other night she asked, ‘would you rather die or not die?’ ‘Not die, of course’, I replied. ‘Yeah because, you know, your legs…..’ Then the same night, whilst learning about nerves looking at one of his body books before bed, my son asked ‘Are you going to get worse?’ I was a bit stumped…I’ve always been open and honest with my kids about my MS; it is not as if it is something I can hide from them. They see my walking worsen over the course of a day, they know that I rely on afternoon naps for a rest, and they help me to make OMS friendly cakes and treats. But I guess, looking back, that I have never fully explained the long term impact that MS can have. They know what MS is – I have likened it to a radio that stops working because the electrical cable is damaged, and they see me but they don’t know other people with MS.
They have seen a DVD that my MS nurse gave me, called ‘Annie and Dan talk about MS’. It explains what MS is and what a relapse is. However, there wasn’t much on progressive MS, which, from my personal experience and view point, is the most uncertain kind. (Having said that, for many, the diagnosis of MS itself can lead to a lot of uncertainty). What will I be like this time next year? Am I going to plateau or keep declining? Am I going to be going to my kids’ weddings in a wheelchair, or will I still be able to manage on my crutches? Lots of questions… and if I have them, what kind of questions do my kids have?
I see my role as being positive for my kids, to allay any fears they may have. Do people die from MS? According to the NHS choices website:
Hi Jen, a great read! Very inspiring 😊
We get questions from Oliver regarding his GSD. The future may be uncertain but like you we tell him we are doing all we can to make sure he’ll get married, have kids etc… We often get the ‘Why me?’ question, we are honest and say we passed the gene on! We say we wished we hadn’t but unfortunately we did! We are very honest about it all.
I lost my mum at 17 and Dan lost his dad last year so death has not been shielded from either of our children but we make sure they are aware that they can do things (in particular Oliver) to stop this happening too early!
I wish we had a handbook that told us what to do, as there isn’t I suppose we have to do the best we can!
You’re doing amazingly xxx
Thanks Zoe,
You guys are amazing with Oliver. I think that the best thing we can do is be honest – it takes any scariness away and sets the kids up for being able to come to us as they grow up with any questions. A handbook would would be ace!! Xxx
First, your son’s drawing is amazing! Bless his heart. I have a spinal cord injury that led to other degenerative conditions but I was lucky. My kids were in their teens and early twenties (for my daughter) when it happened.
I was impressed with the way you handled the conversation with your son. Except for my oldest granddaughter my grand kids have only known me as disabled. It would be tough to have to explain the before and after to them if they knew me “when.”
You’ve got me as an admirer.
Thank you so much for your comment Elizabeth 🙂
You’re very welcome!