Maybe this May won’t bring mayhem for my Angel and me

In preparation for a hectic month, a caregiver doubles down on self-care

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

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Mayhem. It’s a word that sums up all the crazy that can occur, and it’s certainly a good way to describe my life as I raise my 13-year-old Angel, Juliana. But mayhem also reminds me of May, which is right around the corner. May is never very good to me. It’s a month full of happenings and pandemonium that I’d rather not think about. But as we prepare to polish off April, I had the bright idea to make myself an offer I can’t refuse.

I’d truly forgotten that April is National Stress Awareness Month until I heard an ad the other day. How’s my stress level? Fairly normal, I guess, for a parent living with Angelman syndrome (AS). I do my best not to complain because when I think of what we face with AS, it pales in comparison with other families’ struggles. I know Angels who’ve fallen and those who’ve had surgery. If screaming is one of my biggest challenges right now, I’ll take that over a hospital stay any day.

So life is about as good as it can be living with a rare neurogenetic disorder. And then comes May. It’s the month when the school year comes to a crashing halt, with enough events to make me choke. I started feeling panicky the other day as I added more activities to my calendar.

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Stay calm if there’s no storm

But something hit me like a bolt of lightning that said, “No!” You see, I’m trying to become more aware of my foreboding joy. That’s renowned professor and author Brené Brown‘s term for not enjoying good things in the moment because you’re worried about what could come next. In other words, it’s letting the thought of future occurrences overshadow the present moment that’s going just fine.

I immediately paused and thought about how this May could be different. On Sunday, I did a little test run. Sunday is a full day for me, as we’re preparing for the week ahead. Because we also attend church in the afternoon, all the prep for Monday needs to be done before we leave home.

It’s always an adventure to get it all done. But you want to know what I did this Sunday? I got up, made coffee, and then got back in bed and read. I didn’t want to run around like a woman with her hair on fire. Some balls dropped, and I didn’t care. But nothing exploded in the house.

I also noticed that the world didn’t end because I chose to take it easy.

Respite during the storm

That gave me an idea for May. This year, I want to try to face it without dread. If I take some actions that will force a different posture, maybe the month will be better, despite the mayhem that’s already scheduled.

I’ve made a list of things I’ll do to force myself to slow down and give myself more breaks to refresh. Here are a few ideas:

  • Take a nap.
  • Put my feet up.
  • Get back in bed.
  • Go to bed an hour earlier.
  • Do a favorite thing.

Will it be challenging to pull these off? Absolutely. But I owe it to myself. As a caregiver, I can’t afford to only think about self-care and stress one month a year. To be a good care provider, I have to take care of myself all year long — even when life gets hectic.

I’ll let you know how the challenge goes. By just writing these things down, I know I’m already ahead of the chaos that’s coming. But this year, I hope to usher in a little more calm to balance it out.

Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Angelman syndrome.


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