Accepting These 3 Things Makes Living With Angelman Syndrome Easier

Raising our 12-year-old Angel, Juliana, seems to be getting easier in some ways. Research is improving, and scientists are learning more about Angelman syndrome. However, I don’t think our journey is easing because of facts or research. Some of it is Juliana’s age and maturity. But the other part has been coming to terms with three things that are certain to be a part of our lives: the unexpected, the appointments, and the need for flexibility.

Sure thing No. 1: The unexpected

Like most families, we have routines and schedules. However, Angels may have to deal with health issues like severe reflux, seizures, and sleep problems. Additionally, some characteristics of the syndrome, such as irritability and anxiety, affect an Angel’s behavior. These challenging behaviors are at the center of our world right now. We never know if emotions or reactions will change our day.

I try not to live as if I’m waiting for the other shoe to drop. Change and uncertainty are a part of everyone’s life. But for us, some of the characteristics of Angelman syndrome make it likely that a sudden change is on the horizon. Knowing that something unexpected is going to happen is the first step in dealing with it. There are always if/then scenarios running through my mind, which is why flexibility has become so important to us.

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Sure thing No. 2: The appointments

Although I have a system for keeping all of the doctors straight, managing Juliana’s health appointments was quite difficult when she was younger. From infancy through Juliana’s toddler years, we had uncountable trips to the doctor for neurology, gastroenterology, ophthalmology, and orthopedics appointments, along with physical, speech, and aquatic therapies. Most of these appointments are still necessary, but many of them are now annual check-in appointments.

After getting a good report at her annual ophthalmology appointment, Juliana tries out new glasses. (Photo by Sabrina L. Johnson)

Of course, none of these trips were for regular illnesses like the flu or ear infections. When you need multiple medical appointments to keep your child healthy, you simply do what it takes. I’m happy that Juliana is a lot healthier now and we don’t need as much medical care for her day-to-day well-being.

Sure thing No. 3: The need for flexibility

With the unexpected occurrences and scheduled appointments that must happen in our lives, flexibility is a no-brainer. I haven’t always been flexible. But having a child with Angelman syndrome has changed that. I have accepted that things are going to change, and I need to change with them.

Part of the solution is keeping our lives simple. That way, when a health issue or a rough day with Juliana occurs, I have a little wiggle room to adjust our plans. Being overscheduled and overcommitted is something I avoid like the plague. However, sometimes, things collide and pile on, no matter how well I plan.

My first option is to always try to reschedule an event. My family calls this a do-over. Doing things at a better time makes such a difference. If Juliana is having a day in which she is overly anxious or extremely fussy, we stay home and plan the event for another time. I’ve learned the hard way that showing up somewhere when she’s not at her best isn’t fun, because most of the time is spent managing her crying or screaming. If the event can’t be missed, we divide and conquer.

Being truthful that these certainties will always be a part of my journey is wise. After all, isn’t the first part of solving a problem acknowledging that it exists? I may never be able to say that living with Angelman syndrome is easy. But I know for sure that it’s not as hard as it was 11 years ago.

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.