Summer Challenges and Zoom Adventures

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by Mary Kay |

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As of this writing, 140 days remain until 2021 — but who’s counting?

Within two weeks, my husband had two ER visits, one resulting in a hospital stay. A tropical storm caused a power outage, and then our well stopped working. As soon as we were back up and running, I noticed a golf ball-sized lump on my daughter Jessie’s ankle. All I can say is enough already!

Before taking Jessie to the doctor, I researched what the lump might be. I was disappointed when we saw the doctor because she didn’t offer much information. Jess had not been bitten, and there was no bruising to suggest she banged her ankle. The lump could be cancerous, or it might not be. We left our appointment with a script for bloodwork.

Only a skilled phlebotomist will do. Jessie sees a needle and looks for the nearest exit. It takes at least three people to hold her down. The last time we tried to take blood in the doctor’s office, they broke the needle. I told them it wasn’t a good idea, but the doctor insisted their girls could do the job. They underestimated how strong Jessie is.

When I called Labco to make an appointment, their message gave lengthy COVID-19 instructions before informing me that they accept walk-ins, no appointment necessary.

We drove to the lab and were told we needed to make an appointment online. It didn’t matter that we were standing right there. Ugh. I lost it and could be heard cursing down the stairwell. Jessie was upset, too, until I explained to her that she wasn’t in trouble, and that Mom was just “mad as hell and couldn’t take it anymore!

On the upside, the husband is healing after his ER visits, and we had a new sump pump installed in the basement. (Sorry, Jessie, no indoor pool for you.) The pump for the well was a quick fix, and next week, Jessie has an appointment for the bloodwork.

Jessie has been Zooming with her day program. I didn’t think she would be all that interested, but I underestimated her. I couldn’t have been more wrong. Jessie is fully engaged and enjoys seeing her friends and hearing the staff call her name, similar to Romper Room’s magic mirror, which was before technology allowed you to see who you are talking to. Zoom has been pretty magical for Jessie.

In the beginning, I sat with her during the sessions. The first time I stepped away, somehow she figured out how to turn the computer’s camera off. This prevented her from being seen in the gallery. It took several hours to realize that this was not a Zoom feature. The internet provided information as to how to turn the camera feature off but not on. It’s a mystery.

Finally, I rebooted the computer. I should have done this first because that was the ticket. Now I lay a napkin over the keyboard to prevent Jessie from tapping her way into trouble.

Jessie attends her day program via Zoom. (Courtesy of Mary Kay)

Jessie’s program shares interesting topics, and they try to get everyone to participate. She uses her Talker but needs more time to answer. We are working on this.

These sessions keep her busy with chair yoga, virtual trips to the beach, science experiments, preparing recipes, bingo, and music videos — and this is only a partial list.

Because everything is virtual, we try to parallel what they are doing at home. One of the first things Jessie did with her group was to make Mermaid Lemonade. It was pretty, but she didn’t want to drink it!

What keeps Jessie engaged is seeing her friends. She misses hanging out with them and the fun that you can only have in person. We do have a very small circle of people she gets to see, and she is able to shop at Costco without issue, but like everyone else, our world is very small.

We are looking forward to “normal” returning. Eliminating the social element causes skill regression and depression, and is very isolating for Jessie.

I have a good feeling about 2021. Hopefully, we will bust out of this cocoon and transform back into the social butterflies we were meant to be.

To read more about our journey, visit my blog. We wouldn’t even have a story if Jessie hadn’t found her AAC voice. Also, check Angelman Syndrome News each month for future columns.


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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