My Daughter Is Living the Good Life Despite Angelman Syndrome

Mary Kay avatar

by Mary Kay |

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good life

My daughter is living the good life. This week, Jess baked bread, went to the movies (the scheduled shore trip was postponed due to weather), attended a dance and then went out to lunch with a friend.

We also went to a Trenton Thunder baseball game, and we fostered a kitten. I had always feared the day when her school career was over. However, Jess’ life is now fuller and more interesting and normal than I could have imagined. 

Three mornings a week, we practice “take your daughter to work.” I’m not sure which Jess enjoys more, being with the horses or watching me. People tell me it’s because “your work is inspirational to children” so I will go with that.

Although we have to get up early to feed the horses, Jess is the first in the car. She’s always been a horse whisperer. One horse is not comfortable with her Talker, but he’s slowly realizing this is her voice and that he doesn’t need to be afraid. That’s OK, we’ve met some people like that, too.

If Jess observes a routine before I ask her to help, she tends to be more successful. Now that she knows the drill at the barn, she’s ready to help carry feed buckets. Jess knows the best part about feeding is that it will make her very popular.

There’s much to see in the quiet of the morning. She makes many discoveries she would have missed if we were sitting at home.

This time we found a couple of baby birds that had fallen out of their nests and robins’ eggs in the pasture — one intact and another that had hatched.

I carefully put the pieces of the hatched egg in her hand. In her excitement, she giggled and crushed it. We then talked about how delicate and fragile baby birds’ eggs are.

Today, we were up early and didn’t have to go to the barn. I had errands to run — first to the market, then the dry cleaners, and for a treat, the drive-thru at Burger King. Jess prefers Wendy’s, because she can use a touchscreen to place her order there, but Burger King is closer to home.

I kept asking her if she wanted French toast or a breakfast sandwich but she didn’t answer. Finally, in exasperation, I said, “If you don’t make a decision, I will make one for you.” She then said on her Talker, “pancakes.”

Now the delay makes sense — she wasn’t keen on her options.

This is why it’s vital to have a voice, so she can make her own choices. The best I can do is guess and I certainly can’t read her mind.

Home again. While Jess ate her breakfast, I made her a healthy, no-carb lunch and then we waited for her ride. Yes, she is living a full, good life. 


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 Services, and are intended to spark discussion about issues pertaining to Angelman syndrome.


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