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What I Need My Kids to Know About the 'Real Me' Before Multiple Sclerosis

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Dear Alex and Ava,

This letter is to tell you a little bit about me. I can hear you saying, “What? We already know everything about you. You’re our Mommy!” But, the thing is, you don’t. Well, at least not fully. Because the person you see isn’t 100 percent the real me.

The real me loves dancing. Dancing to any kind of music, from cheesy pop, to rap, to rock. My sister and I used to make up dances in our basement in Canada. She was better than I was (unfortunately I don’t have the coordination gene like her), but we loved making the dances up, then performing them to Granny and Papa. I also used to dance around the room with you on my hip, marching with you and lifting you up in the air singing “The Grand Old Duke of York.” When I was a student, I used to stay up until the wee hours of the morning, getting a week’s worth of exercise in one night, just by dancing.

The real me loves walking. When you were both babies I loved putting you in the sling, or popping you into the pram and going for a walk. It was a surefire way to get you to sleep and for me to have some “me time,” away from the house. The real me loves walking around, exploring. I have spent hours exploring cities on foot — New York, Prague, Bangkok, London — loving the fact that there was no plan, just the chance to find new places. Your dad and I went to Thailand, with no agenda, no pre-booked hotels — we just wandered around until we found little beach huts we wanted to stay in.

The real me loves running. One of my “bucket list” dreams is to run a marathon. Running used to be my preferred method of exercise — I may not have been fast, but I managed to work myself up to almost an hour of running non-stop. Running helped me to clear my head and I competed in a few 5Ks, including our local Race for Life, which you see some of your friends’ moms running in.

The real me loves having busy weekends, with friends to see and places to go. She can spend a couple of hours tidying the house and then still have the energy to host a party or go out to watch a band. The real me loves going out after a busy day at work, maybe going to see a film, or catching up with family for dinner.

As my multiple sclerosis symptoms increase, it feels like the real me is slipping away and I worry that you are never going to know her. I can’t dance, I can’t walk for hours, I can’t compete in any more Race for Life races. I struggle to do more than one social event on a weekend and a day’s work uses up all my “spoons”, which means doing something other than putting you to bed, then slumping on the sofa, is out of the question. But I want you to know. I need you to know that I was not always the tired Mommy you see, the one who has to have regular naps, so that sometimes I miss out on a day out with you and Daddy. I try and save my spoons if I can, but sometimes they get all used up.

I can tell you that there are other bits of the real me that you do see. The real me loves spending time with you — I love taking you to the cinema or having movie afternoons at home with homemade popcorn. I love baking with you, teaching you how to make banana bread and cakes and letting you lick the spoons. Ava, I love crafting with you, helping you to make pictures out of crepe paper and paints, glitter and cotton wool. Alex, I love playing card games with you and going outside having competitions to see who can score the most baskets with your basketball.

woman sitting on a boat with two young kids
Alex, Ava and Jenny

Most of all, the real me loves you so very much. No amount of walking, running or dancing lives up to the joy that you give me, so for that, and for you, I am truly grateful.

Love, Mommy

Follow this journey on Tripping Through Treacle.

Originally published: July 25, 2016
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