What My Child Notices about MS & his Advice to Other Children

When our children are young, we don't always give them the credit they deserve. They notice a lot more than we realise. I suppose this is the reason why we have a lot of 'sugar-lumps,' 'bar stewards' and 'mothers' in our house.

As parents with a chronic condition, we worry a little more that our children are missing out not just because we may be working, but also because we're not always able to be the parents we envisaged. Since teenagehood, I've always had an idealised version of what being a mother was all about. However, as a mother now, I've realised that that was never my path to begin with; the idealised version was entirely inflexible.

So, how does this all translate into children living alongside someone with a chronic condition? Sometimes, Little Jimmy will say to me 'Oh Mummy, that's your MS brain!' as I stumble through my words. Sometimes, he'll correct me when I fluff up my lines, or finish my sentences when I find word-finding difficult.The reality is that I don't fully understand the impact of what my MS has had on him, as it's difficult for him to articulate all of his thoughts whilst so young. However, he's also very smart and we have a lovely open relationship. I asked him what he noticed about my MS and here's what he said verbatim:

• "Sometimes, you feel tired and dizzy when you get hotter, when you feel like a melting ice cream."
• When you can't think properly, you can't speak words."
• "You can't remember things."
• "You get a bit tired. Sometimes, you can't do things that much, like dishes or playing. Sometimes, you have to stay home."

I asked him what advice would he give to children with mums and dads with MS:

• "No need to worry, it; it's not like there's something really wrong; it's something normal."
• "Some people get it sometimes."
• "Sometimes these things can happen."

There is no doubt that I've adjusted my parenting because of my MS. Little Jimmy and I talk openly about it (though I never push my luck and always take his cue when he wants to stop). I've adapted the way I do things with him so that whilst they don't embody the idealised version of parenthood, I am confident that I do as much as others in perhaps a slightly different way. Either way, I know I am doing a really good job.

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