An Easter Curveball That Spins Into a Happy Ending

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by Sabrina L. Johnson |

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I’m a big believer in sharing wins and not just challenges. Unfortunately, challenges, conflict, or a shocking headline is what draws attention. In full disclosure, there is no shocking tale here. However, there is a simple story about making the best of things when a curveball comes our way. While raising our 12-year-old Angel, Juliana, my husband and I certainly get our fair share of them.

As many families did this past week, we took time to celebrate Easter Sunday. As usual, we had a simple celebration planned. It would include church, an Easter egg hunt, and a family dinner. I was happy that the church service would be outside, which meant that Juliana would be able to attend.

Although she got her COVID-19 vaccine shot in January, we’re still limiting Juliana’s interactions with a lot of people and crowds indoors. Like many Angels, Juliana needs support and assistance with eating, toileting, and other daily needs. Outside of school, I’m just not ready to have others helping her right now. Yes, I might be too cautious, but it’s what I feel is best.

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So for now, Juliana will only attend large events when they are held outdoors. Luckily for us, the weather held up and we were able to attend our church’s outdoor service and celebration. I had a great plan for us to get out of the house early so that we would have plenty of time for parking and finding a place to sit at the park.

Of course, things didn’t go as planned. Something unusual is going on with Juliana’s digestive system, and she has been experiencing a lot of diarrhea.

Sink or swim

I think you can see where I’m going with this, so I’ll spare the details. Let’s just say, Easter morning started out with an unplanned bath for Juliana. It was turning into a stressful situation, and I didn’t want to go there. With some quick redirecting, I decided to divide and conquer. I sent my husband and 10-year-old daughter, Jessa, to church as planned. Juliana and I stayed behind so that I could finish getting her ready.

For some, staying home after an incontinence blowout would be the right choice. However, I pressed on. First, I didn’t want to miss the opportunity for an outdoor service. Second, Jessa was excited about the Easter egg hunt at church. Since I’m being uber-intentional about giving her attention, I didn’t want her to miss the activity.

In a rather rushed but calm state of mind, I focused on getting us out the door. The event would be a family service, which meant that Juliana would be sitting with us for at least an hour. Since Angels can be hyperactive with a short attention span, I wanted to have plenty to keep her busy. And since Juliana is using her iPad more to communicate, I didn’t want to forget it. Because Juliana is considered nonverbal, she uses an augmentative and alternative communication device as her talker. I have forgotten it on other outings and didn’t want to make that mistake again.

Made for walking

When Juliana and I finally got out of the house, I had to make a decision about parking. Our church was running shuttle services, but I knew Juliana would have to tackle the stairs inside the van. Lately, Juliana is struggling more with climbing stairs, so I didn’t want to risk a meltdown. I nixed the shuttle and opted to have her walk. This was risky, but it paid off. Juliana was agreeable to the 10-minute walk and did so fairly cheerfully. Lots of families passed us as we slowly made our way. It seemed like the longest walk ever. Fortunately, we got to the service with a few minutes to spare before the welcome began.

At some point when the music was playing, I glanced over at Juliana in all her bliss. She beamed with excitement and rocked out to the music that was playing. There’s lots of clapping at our church, and she did her fair share of that, too. I couldn’t stop smiling and felt relief and happiness for the moment. It was about as picture-perfect as I could’ve hoped.

responding to challenges | Angelman Syndrome News | A collage of photos show Juliana and her dad posing in front of a wall of greenery and the words "He is risen." They are celebrating Easter Sunday at their church's outdoor service.

Juliana poses with her dad at the Easter service photo booth. (Photo by Sabrina L. Johnson)

Our Easter was eventful and uneventful at the same time. Sometimes, when challenging moments arise, it can be so easy to throw in the towel. For a split second that morning, I considered it. But sometimes, a little extra effort and determination can make all the difference. It was tricky, but we pulled off a great day despite the rocky start.


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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