We are nearly at the end of our first week camping at my parent’s house while the builders smash up our little house. It has gone pretty well (once the kids got used to sharing a room and first night madness became a distant memory!) but it got me thinking about how resilient children are and how they adapt to any situation as long as you’re there to love and support them.
It’s also got me thinking about how they cope with having a parent with a disability (I still can’t bear the “disabled” label!) There are lots of disadvantages which are a constant source of anxiety to me, many of which I’ve talked about in previous posts but what about the positives? Are there any? How does having a parent with a disability shape your personality and does it ever make you a better person?
My little nephew was watching me walking yesterday and said, “Why have you got 2 sticks?” “Because I find it easier sometimes” I said. “Oh” he replied and carried on his intense battle between Batman and Robin (with sound effects) He accepts it as normal and knows not to take Aunty Abi’s sticks for his games as they are not a toy, even though the temptation is almost too much for him to bear!
My son is nearly 6 and he remembers me taking him to the park and play dates on my own when I was more able. I wrestled with how and what to tell him about my condition as he got older and I got more noticeably affected by MS. Many of my new friends from the Facebook group, muMS uk, have talked about having mixed feelings about what to say about their condition. Our instinct as Mum’s is to protect our children from bad news but we’d all hate for our children to think we were being lazy or uncaring. Many talk about how difficult the school run is, for example, and I want Henry to understand that I’d do it if I could but some days it just isn’t possible.
Eventually I decided he’s a bright boy and deserves the truth so I sat him down with an MS society leaflet and explained. He was very interested and took the leaflet into school for show and tell which I thought was a great idea. His friends need to understand and I’m hoping their attitudes to disability will be improved as a result.
He copes with it by having 2 personalities, bless him. When The Husband’s around he lies back and barks orders, “Daddy, can I have a drink?” “Daddy, can you bring me a sandwich?” When Daddy goes to work he seems to grow 2 inches and transform into Helpful Henry, imagining a golden H on his chest and his under-pants over his trousers! He helps get tea ready, helps run the bath and get his sister undressed and has even been known to get a bottle of wine from the kitchen (I know, bad Mother of the year award goes to me!)
I’m most proud of what he’s learning about people. He knows that everyone is different and we all have things we can do well and things we can’t. Mummy can’t walk well or run but she can cook a mean macaroni cheese and gives the best cuddles ever! He also knows about equal opportunities, Mummy just needs a bit of extra help to do things that everyone else does. He has compassion and empathy for people with disabilities and differences and I think he’s growing in independence and confidence as a result of his Helpful Henry alter ego!
His little sister is only 2 and has never known me without sticks, “Mummy can’t walk very well” she says matter of factly as she hands me one. She offers me her little hand to help me up and told her Grandma recently, “Mummy can’t pick me up but she can give cuddles on the sofa” that just about sums it up for me!
I’m sitting here with my 26 yr old son, apart from worrying about me falling off my bike, he is grateful for having a greater perspective on life. He is not afraid of ‘disability’ he has grown up with it.
As his mum I would say I’ve been able to give more time to listen and therefore have developed a good relationship with both my son and daughter.
Best of luck… I am glad I don’t have to do it again and it is hard needing your kids to care for you when you should be caring for them! X
Thanks so much for your comment. It’s great to have your son’s perspective and I love his observations about not being scared of disability.
I have lots more to say on this subject I think!
Only just caught up with this, but some years ago, when we first told my then young children about my MS, my son wanted to know if I was going to die. My answer was not from MS but because I walked slowly I was more likely to get run over by bus. He’s only just stopped holding hand when we cross the road – he’s nearly 21 now! – and is the only one of the family that slows down to walk with me when I slow down to snails pace. I sometimes use a stick now but my husband and daughter see that as an excuse to get through airport queues quicker, whilst son carries my bag! Moral of the story? Sons beat daughters in the caring stakes – in my family anyway! Oh and dog has no problem walking at my pace and doesn’t complain at all!
Thanks for your comment Suzy, your son sounds like a lovely boy!
Mine is also very caring but is only 5! We’ll see how he grows up with it