Thoughts of guardianship won’t overshadow my love of summer

The present often trumps the future when living with Angelman syndrome

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

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Since my 13-year-old Angel, Juliana, was little, I’ve been hearing the word “guardianship” repeatedly. I recently got an official welcome to that legal process during Juliana’s final meeting of the year for her individualized education program (IEP). Guardianship is necessary for those with Angelman syndrome because Angels require lifelong care.

Juliana will need us, as her guardians, to handle her health as well as her legal and financial decisions when she becomes an adult. Either Juliana’s teacher or our support service coordinator mentioned that she typically has this conversation with parents during their child’s first year of middle school, to get it on the parents’ radar.

My initial thought was appreciation, but something else came to mind.

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Is it time already?

My first thought was “Woah!” We just got to middle school. Is it already time for that?

The answer is yes and no. The day is fast approaching for us to take legal steps for Juliana, again. We did a similar process when we adopted her as a baby. Adoption demands a lot of paperwork, and filing for guardianship will require another pile.

But in all honesty, that can’t be on my mind right now. I was filing the IEP paperwork, which prompted the thought, but I quickly put the process out of my mind. After all, school just recently got out. I’ve started projects around the house, as well as the transition to our summer routine. As the weather warms, we’ll start going to the pool and appreciating the lazy days of summer. This season is my favorite time of the year, and I won’t miss it by worrying about our next big step.

Yet I know guardianship looms around the corner. Still, I won’t focus on it just yet. I’m thankful for the reminder because I don’t like important deadlines to take me by surprise. That’s possible when you’re living with Angelman syndrome. There’s usually another appointment, health issue, or challenging behavior that requires my attention. What comes next can be an afterthought.

Not focusing on tomorrow

I’m not sure if it’s irresponsible of me, but I rather like living this way. In some ways, it helps me keep my sanity. If I spent every waking moment thinking about what comes next for my Angel, I’m not sure how much peace I’d have. Not enjoying the moment while waiting for the other shoe to drop is called “foreboding joy.” I’m constantly working on being joyful in the moment and not fearing the next big scare.

Yes, guardianship will be here before I know it. Five years really isn’t that much time. I’ve got the deadline tucked in the back of my mind. Plus, I see reminders at every turn, so forgetting the process is quite unlikely. For now, I’ll choose to just think about summer.

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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