Every mother or father knows that parenting is peppered with many feelings of misplaced guilt. We bought the ‘homemade’ cupcakes for the bake sale or sent our child to school with the wrong books. As parents, we can’t escape it. The second our child emerges into this world, we become wracked with fear and guilt, convinced that we simply aren’t good enough. Maybe it is a purely physiological reaction to the weight of the new responsibility to ensure that we rise to the occasion. Whatever it is, it’s enough! The last thing we need is our condition adding to that guilt by making us feel too sick to be ‘proper’ parents to our children. We can’t help that.
I know that being trapped in bed by ankylosing spondylitis symptoms when you’re supposed to be tucking your child in at night is heart-wrenching, but instead of feeling guilty for the things you can’t do, get the most from the things you can. Focus on playtime, on making it as gentle on your body as possible. This allows you to be engaged despite your illness without compromising a good day for a bad day.
Playtime hack 1: Physio is fun!
An hour of physiotherapy stretches is the only way I can start my day! My son Sawyer recently started waking up during my stretches and demanding my attention (he’s three, after all). As a single mom, I used to sacrifice my stretching to get out of bed faster at his command. Eventually, I got wise and realised that, crippled by lower back pain if I missed physio, I wasn’t any good to my child at the end of the day. So I invited him to join me in bed one morning for some stretching - now he stretches with me every morning and he loves it! This is playtime, friends!
Playtime hack 2: Household geography
One of Sawyer’s favourite times to play is as soon as mommy has collected him from daycare. This, of course, is also the time when I have to cook dinner. If you only take one hack away from this article, let it be this one: find a way to set up your child’s play area near the kitchen.
This is not only for your body’s sake but also for your mind’s - there is nothing more stressful than cooking and worrying about your child at the same time. You’ll end up running back and forth, checking-in and making sure they’re happy and having fun.
If you can keep an eye on playtime while you cook, you not only feel relaxed, you feel like you’re part of the action. This way you don’t miss out on any precious playtime – and you may even get a hand with making dinner!
Playtime hack 3: Positive talk
When you are playing with your child and they want to do something you aren’t capable of, don’t just say ‘no’- offer alternatives! He wants to be picked up onto the swing? No problem. ‘Mommy CAN help you go down the slide and daddy (or grammie or uncle, etc.) can put you in the swing next time.’ I try to never say ‘mommy CAN’T,’ I offer something mommy can do and suggest the first activity as something he can enjoy with the other wonderful people in his life! It sounds easy but you would be surprised how difficult it is to cut out the negative words we have instinctively tied to our illness. There is nothing like positive talk to make your child feel that you are a good and happy parent despite your illness. And be consistent - if you lift them once, they remember forever!
Playtime hack 4: Organisation!
I was the biggest mess of a person before becoming a parent and then I was suddenly ill and a parent all at once. Needless to say, I struggled to get my act together for a while. I would have fun with Sawyer when I felt well and then be too tired to organize or clean. This is what psychologists call a ‘vicious cycle.’ The best way not to get caught in it is to organize bit-by-bit on good days.
Color-coded, easy-to-sort bins that all fit into one closet are my recommendation. The color-coding helps children recognize what goes where and you can always reorganize when you feel better (the closet hides the mess in the meantime). It may surprise you but clean-up time can also be a fun playtime activity between parent and child. Sawyer and I have a clean-up song that we dance and sing to as we clean. This has evolved to incorporate some Taylor Swift jamming and break-dancing (no pun intended) in my house!
Playtime hack 5: This playtime will expire in 5, 4, 3, 2, 1...
It is ever so important, when parenting with an illness, to set time limits for playtime activities. Don’t be shy not to play on the floor at all on a really bad flare day (“Mommy can play on the couch and you can play on the floor while mommy makes lunch”) but, even if you do feel up to it remember how tough it can be on the AS body. Set a time limit and make sure to count down when nearing it. Having a calm, seated activity that your child loves as a follow-up activity is also a helpful tool to help limit your time on the floor.
You should also plan ahead for when you need to get up. I found myself stuck on the floor once, with my phone out of reach - I don’t recommend it. Just in case, always have a cane or chair (and phone!) nearby during floor time to aid in your eventual ascent.
Playtime hack 6: Treat bad days like rainy days
When you are having a really hard day, it is so easy to get to a bad place mentally and curse yourself for being a lame parent because you can’t be as fun that day. Stop it! Everyone has rainy days, not just us! Treat your bad days like rainy days and lose the guilt - your child can sense your mood.
Arts and crafts and reading are activities that are just as fun as playtime and wonderful for development. I made Sawyer his own reading cubby area that we have slowly been decorating together, adding lanterns, pillows and stickers of his choice. He gets excited for ‘mommy’s rainy days’ now!
I can honestly state that I feel like a better parent for having AS. I took the time to figure out hacks to make sure I get in as much playtime with my child as possible and not knowing when a bad day might strike has helped me to relish every good moment with Sawyer. An illness makes you rethink everything you do with this gift of one life. This AS life is still a gift, especially when you can share it with your child!
This article was written by Bjillian MacKinnon, a regular contributor at ThisASLife.com. A social site helping the whole AS community to: Learn. Share. Inspire. Discuss.