My self-care is more important for my Angel as I get older

With aging comes new demands to attend to my physical and mental health

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

Share this article:

Share article via email
banner image for

Self-care has been an important part of the quality of support I provide for my 13-year-old Angel, Juliana. As the years add up for each of us, however, the word has taken on a new meaning.

Regretfully, I’ve let a few things slip with my health over the years. But now, I’m more intent on focusing on my well-being so that I can be a good care provider for as long as possible. I owe that to myself and to Juliana, who lives with Angelman syndrome.

While it’s difficult to face, every special-needs parent must eventually decide who will provide for their child’s well-being after they’re gone. I’ve come across traditional care methods, such as group homes, and the nontraditional, such as sibling care. We’re not at that stage yet, thankfully, but when I feel a new stiffness or pain, I’m reminded of this decision.

There’s nothing I can do to slow down time or turn back the clock. What I can do, however, is be the best version of myself. That’s a physical and mental call to action.

For me, the mental is a lot easier to manage than the physical. My mental health means not taking on too much, adopting a simpler lifestyle, and balancing my caregiving with my personal interests. I have hobbies I enjoy, and setting small, personal goals helps me feel more like an average mom.

Recommended Reading
A doctor uses a stethoscope to examine a child being held by an adult.

Tools measure Angelman severity from clinician, caregiver perspective

Staying in shape

The physical side of my self-care can be more challenging. When Juliana and her sister were younger, I loved going to the gym and taking group classes. When my work schedule changed, that became impossible. For the past several years, I’ve turned to an online program that offers every type of exercise imaginable.

I do my best to tune into classes as much as possible. But sometimes, life just has a way of changing your days. Even in times when my regular exercise has been interrupted, I simply get back on track as soon as I can. I’m not radical about it, and my goal isn’t some unrealistic perception of a perfect body.

In the back of my mind, I’m thinking about aging gracefully. But I’m also thinking about the physical care that Juliana will need to dress, bathe, and make trips to the bathroom, among other tasks. Staying in shape myself will make those tasks easier to manage.

The other part of my physical care is making sure I set my own doctor appointments and take medication as prescribed. For a while, I slacked on my supplements, and the absence immediately showed up in some test results. A quick scolding from my doctor put me back on a straight and narrow path.

As Juliana’s mother and care provider, I have an easy time making sure her needs are met. She depends on my husband and me for those basic needs, and we want to get them all as right as possible. If I neglect myself, however, I don’t have the energy or ability to do the best for Juliana. This odd turn of reality — needing self-care so I can care for others — is somewhat ironic and, to me, insightful. If the goal is to take care of Juliana, then I’d better take care of myself, too.

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.


Leave a comment

Fill in the required fields to post. Your email address will not be published.