The Devil on My Angel’s Shoulder

Although they present a happy demeanor, Angels can have bad days. Or bad weeks, which is what happens when my 11-year-old Angel, Juliana, is sick. Her sweet disposition is there somewhat, accompanied by a mean little minion that seems to be sitting on her shoulder urging her to dish out her worst.

Every day can’t be rosy

I named my Angelman Syndrome News column “Glass Half Full” because of times like last week, when I have to grit my teeth and say, “OK, this will pass.” Juliana was sick. And thanks to a weaker immune system, it takes a little more time for Juliana to recover when she is not feeling well. In other words, when Juliana is sick, it really changes our household.

Juliana only had a head cold. But unfortunately, the cold led to an ear infection. We only had one night of really bad screaming. The screaming, of course, was from pain, but Angels can be sensitive and hyperactive, so sometimes, screaming is Juliana’s go-to response. Again, I’m looking at it from a glass-half-full perspective. There could have been two nights of screaming.

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Hey, don’t do that

I think the minion spent most of his time urging Juliana to do the opposite of what I needed her to do. Talk about stubbornness. It didn’t matter how congested she got. Or how much I needed to clear her nose.

Stubborn was the attitude for the day. Then, a few days into being sick, Juliana refused to come downstairs. After several urgings to get her to walk downstairs, I walked away to cool down.

Then, I came back smart. We didn’t go downstairs. Instead, I marched her to her room and gathered a big bucket of toys. After closing the hallway gate, I headed downstairs to make preparations for a day upstairs.

Despite being sick, Juliana got to enjoy some playtime in her room. (Photo by Sabrina L. Johnson.)

We spent the entire day there. Juliana had every meal upstairs that day and was content to lie low and play in her room. Sometimes I forget that it is one of her favorite spots in the house. So, I just let her spend the whole day there. There should be some perks to being sick, right?

Sick but still simple

Juliana got sick during the week leading up to Christmas. In between fighting the minion, I busied myself with little projects of sprucing up around the house.

When Juliana is sick, I try to do something else to take my mind off of the caregiving challenges. It helps a lot.

No one ever wants to get sick before a fun event or holiday, but the timing was perfect. School is out and our schedule is open. There were no extra parties to attend or elaborate Christmas lists to toggle. This is why we live such a simple, focused lifestyle.

When times like this come along, they shake me a little, but it causes just a few hiccups in our routine. Our no-frills, pre-Christmas celebration was on track to slide into a quiet, blissful Christmas Day. And despite Juliana being sick, that’s exactly what we had.

At the end of the day, none of us can be 100% ourselves when we are sick. And I was reminded of that with Juliana this week. When we are sick, we are crabby, fussy, mean, and grumpy. She did her best, and I did mine.

Again, I’m thinking about a glass half full. With Juliana on the mend, I’ll soon be able to say goodbye to her stubborn little friend. I’m so happy he doesn’t visit us very often.

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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.