My surgery recovery doesn’t deserve a caregiver’s pity party

How this mom is navigating medical setbacks while caring for her Angel

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

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I don’t make it a habit to feel sorry for myself. Twelve years ago, when my husband and I learned we’d be raising a daughter with Angelman syndrome, we decided that pity was an emotion we wouldn’t welcome. But when tough times come your way, it can be hard to keep promises.

That’s been the case over the past couple of weeks as I recover from hand surgery. I had to have a similar procedure on my left hand a few years ago. But this time, the pain attacked my right hand, making another surgery imminent.

Dealing with any type of medical issue can be difficult. When you’re a caregiver, however, any personal illness or injury must be managed in addition to caring for your child or loved one. Last week, I cried when I couldn’t cut up food for my Angel, Juliana. I’m exercising my hand, but I’m not quite ready to complete fine motor tasks.

I’m happy to delegate when necessary, so my husband has taken over Juliana’s meal prep while I get my hand back to normal. Having surgery on my dominant hand has been tricky. And it’s not just my caregiving that’s affected.

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Some of my favorite hobbies, such as gardening, DIY projects, and baking, require the use of both hands. Since I don’t drink, those outlets are healthy distractions from the medical and emotional challenges that are a part of life with Angelman.

With a limited range of motion, I was a little pouty and disappointed about my recovery. I knew it wouldn’t be a picnic, but self-care and caregiving without the use of two hands is tough. When I’m facing a hard time, I try to give myself some time to feel down, and then move on.

Turn it around

It’s been less than two weeks since my surgery, but I’m already starting to feel better. What helped? I got out of the house and went grocery shopping in the actual store, forgoing my regular delivery. Although I’m not a shopper, I did some window shopping to prepare for some future DIY projects. And at a recent doctor appointment, I received a good report on my overall health. I might not be at 100% right now, but in doing what I can, I realize I really don’t have anything to pout about.

It’s still been a struggle to do fine motor activities, like helping Juliana pull up her pants after a trip to the bathroom. And there are still jobs that I’ll continue to delegate to my husband. But I’m done with the pity party. In the near future, I’ll be back to regular caregiving and those hobbies that I love so much.

And when I’m feeling low again, I’ll have this thought to guide me back to reality: Despite a temporary medical hiccup and going toe-to-toe with a rare neurogenetic disorder, my life is still pretty good.

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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