May Brings Mayhem for This Angel Mom

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

Share this article:

Share article via email
how to find a babysitter | Angelman Syndrome News | banner image for

Our 12-year-old Angel, Juliana, is finishing her last year of elementary school. That means our already eventful month of May has kicked up a notch. There have been some different end-of-year activities for this precious milestone. I know these events should be fun, but even fun can bring added stress.

Being the parent of an Angel already comes with its quirks and difficulties. According to a 2018 study published in the Orphanet Journal of Rare Diseases, mothers like me, who have children with specific genetic syndromes, experience levels of stress similar to mothers of children with autism. Autism moms have been identified as a high-risk group for mental health issues.

The struggle is real

Living with Angelman syndrome every day, I didn’t need a study to understand this. That’s also why I’ve turned to a life of minimalism. I make a point to tackle one day at a time. One thing at a time is an excellent idea, too. But what happens when life takes over and there’s just more coming at me? Do I hold or fold?

For me, the month of May is that time. Sometimes it’s not an unexpected medical crisis that pushes me too far. It’s May. May begins with Mother’s Day, followed by a slew of celebratory events like the end of school and graduations. No matter how I try not to have too much happening, I feel added tension every May.

Recommended Reading
facial features | Angelman Syndrome News | illustration of an Angelman child

Experts Detail Best Strategies for Angelman Care in New Guidelines

This year, when I realized May was nearly over, I figured there would be smooth sailing through the final days of the month. Then the hot water heater in our house mocked me and decided to burst.

I like to consider myself a pretty strong-willed person. After experiencing all the chaos of a recent floor renovation, I felt that we had finally rounded a corner to get back to normal — our normal, anyway. Additionally, Juliana has granted us yet another reprieve on her challenging pubescent behaviors.

But when I woke up last Saturday morning to a drenched kitchen and dining room, I ran out of hope for a minute. I felt like I couldn’t face one more thing. The moment was like a scene from a movie. The curse of May had caught up with me. I put my hands to my face and cried.

Muddling through the mayhem

The cleanup was brutal, and my husband and I worked well into the night to remove our water-logged new flooring. We kept Juliana out of the kitchen and dining room until we could get things straightened out. I stayed up a little later because I wanted to have things set up for breakfast the next morning. Fans and a dehumidifier worked overtime to balance the moisture in our house.

It was so loud. All the furniture from the wet rooms had to be shuffled around. Damaged and partial flooring is not the safest space for an Angel who might miss a step or two. I didn’t know how Juliana would react to the noise or the furniture being in a disarray.

But in the midst of this crazy circumstance, Juliana didn’t miss a beat the next morning. When she came downstairs for breakfast, I directed her to the café table that is now in my home office. I modified the table for Juliana so that she can easily sit down alone. The table rolls, and she has learned to maneuver it. That morning, she hesitated for a moment, rolled the table back as usual, then got to work on breakfast. I was surprised and proud.

parent challenges of angelman syndrome | Angelman Syndrome News | Juliana smiles while sitting at the breakfast table, with a plate of food and her pink tablet.

Despite the current chaos and changes in her home, Juliana enjoys breakfast as usual. (Photo by Sabrina L. Johnson)

In the midst of a trying circumstance, sometimes all we need is a quick moment to bring back some joy. Watching Juliana navigate breakfast as if nothing around her was different reminded me of that. If she can do that, surely I can hold on through the month of May.


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.

Comments

Leave a comment

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