Feeling rested is cause for celebration for this Angel mom

Waking up full of energy is a rarity when parenting a child with Angelman

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

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As a mother to my 13-year-old Angel, Juliana, I found myself in uncharted territory last Sunday. For the first time in a long while, I didn’t feel too exhausted to celebrate Mother’s Day.

Breakthrough is not the word that comes to mind. Perhaps I turned a corner? I’m not sure of the exact way to phrase it, but when you’re living with Angelman syndrome, not being too tired is a big deal.

Illness, meltdowns, hyperactivity, appointments, and tantrums are normal occurrences in my life. The month of May, with all of its busyness, just seems to add more to my already full plate. I call it mayhem, with end of the school year graduations, celebrations, and other special events. Each event we attend requires keeping Juliana engaged and occupied. Because of her hyperactivity, sitting still isn’t an option.

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In the week leading up to Mother’s Day, Juliana had a talent show to attend. We left before it ended because she was getting too antsy after her iPad died. Although the event was great, attending it still required some planning. I always pack Juliana’s favorite toys and other items to keep her occupied. This time, though, it wasn’t enough to get her through such a long activity.

The talent show was something we had squeezed into our schedule at the last minute because Juliana was receiving an award. I’m glad we went, but I was also looking forward to a low-key Mother’s Day to end the week.

Simple is better

I like simple celebrations, and Mother’s Day is no different. It has taken me years to shape the day as I had envisioned it. As the mom of an Angel, it seems I never have enough downtime. Something always needs my attention. So for the longest time, I didn’t want to tell my husband that a tranquil Mother’s Day is all that I really wanted. I wanted solitude.

Some people are energized when they are around others, spinning their wheels in many directions. I’m the opposite. As an introvert, I recharge with quiet time spent alone. My husband has since honored my request for such a simple celebration.

My Mother’s Day normally starts with lots of lounging in bed. Reading, coffee, and perhaps a few phone calls with friends are all a part of the morning. I get to stay in my bedroom alone until I’ve had enough. Later in the day, we go shopping for plants for my garden, and then top off the evening with a take-out meal.

This Mother’s Day was different, though. Instead of waking up already fatigued, I actually woke up feeling well rested. Interestingly, I had been sick with food poisoning the previous day. I was certain that our Mother’s Day plans would have to be relegated to a do-over the next week. But I woke up Sunday morning feeling better and ready to enjoy the day.

A family poses in a special Mother's Day photo booth decorated with giant balloons and flowers.

Sabrina has a quick photo booth pose with her family before shopping for new garden plants for Mother’s Day on May 14. (Courtesy of Button It Up)

There was no lounging this year. I didn’t feel the need for the extra respite I had craved earlier in the week. Instead, I got up, had coffee, and moved on to tackle some projects around the house. I’ve been mindful this month of practicing more self-care to level out the stress of all the extra responsibilities. Maybe that was a factor in my burst of unexpected energy.

Whatever the cause, it was nice to enjoy Mother’s Day this year with a clearer head and less of a need to refuel. Now that I think of it, I do believe I turned a corner after all.

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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