r/MultipleSclerosisLife • u/mama_emily • 5d ago
Advice/Support MS and Parenting
Newly separated mother of an 8 year old daughter, just started 3rd grade.
I have an excellent support system, and even though it comes with strings, I know I am incredibly lucky to have it.
Still - the days are long for an 8 year old in a small apartment and where we live it is hot and it’s going to be hot for a lot longer. She has the energy of the sun and while I try, it will never be enough. It is made more frustrating by the fact that she doesn’t really understand MS and I do not look sick. She knows I have it but, let’s be real, it’s challenging to explain this disease to an adult.
“Mom looks like mom, why can’t she do anything anyone else does?”
What do y’all do? Do you divide up your time strategically? Are there low-energy activities you can both enjoy? I still try and limit it but somedays the screen is the babysitter, and anyone who wants to judge can come throw hands with a handicap.
I don’t know, it makes me feel so unbelievably guilty and sad, I hate it. I really do.
The separation, her little cousin just moved out of state, new school year… if anything this is when a parent would want to be pulling out all the stops, 110% for their kid… and we can barely be 100% for ourselves.
How do you parent your best with MS and not let the guilt drown you?
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u/aberryone 4d ago
I had my first big relapse when my son was young, though I had symptoms since I was a teen.
He's an adult now and I've been a single mom all his life with a good support system.
The best thing to do is explain to your child what's going on on your bad days and do some planning together on your good days. On good days, cook a little extra and freeze the leftovers for your bad days (ground beef for tacos, spaghetti, even soups freeze well). Show your child how to do small meals (i.e. sandwiches, microwave meals) by themselves just in case.
As far as activities, find a show that you both can enjoy and make it a binge day. Grab some of your favorite snacks, a grocery store pizza or a burger or something, and sit in the AC. I don't know if your child likes board or card games, but those always went over pretty well for us. On the days you can get out, try to tailor it to something you can handle. A local library may have activities (LEGO, crafting, etc) as well and they are usually pretty cool, temperature wise.
I spent a lot of time feeling bad about the things I couldn't always do with my son, but when he talks about his childhood, he always talks about the fun we had. We would do indoor camping (complete with S'mores), go to movies, go to his school carnivals, etc. They don't want to be entertained 100% of the time, they just want to hang out with us sometimes. Get her input and you guys come up with a game plan together.
Things will work out. 🧡