The Unforgettable Moments That Mark Milestones for Our Son With Angelman Syndrome

The reminders are always there, sometimes when I least expect it. Today I realized my son is a few short months away from being age-eligible to work at a restaurant. I know that typically developing teenage guys learn to drive at this age. They may hang out with their friends, play sports and many dream about college and their future.

When my son was diagnosed with Angelman syndrome at 7 months old, the dreams I had imagined for him changed. In the past 15 years, I have slowly learned how to dream new dreams. I’ve also learned that it’s OK if the original dreams, marked by “typical” milestones, still make my heart ache. The ache dulls quickly, and I remember that these events don’t hurt my son.

Ann Marie Fennelly's son
Ann Marie and her son.

I never anticipated the level of joy I could feel when he met milestones that are so meaningful to him.  At 14 and a half years old, my son walked independently. Doctors told me that if he didn’t walk by age 7, he likely never would. He took his first steps on a Sunday afternoon in our home with his parents and three younger siblings cheering him on. February 22, 2014 was a day never to be forgotten.

Other unforgettable moments include him learning to use a utensil for the first time, wanting to eat and not relying on a feeding tube for sole nutrition, walking up and down bus steps, sitting in a regular chair at a desk in his classroom in high school, and all of the times when he speaks to me with his eyes.

I don’t know what his future will look like, but I’m OK with that right now. My new dreams for him continue to evolve. I no longer imagine him and a date going to his high school prom, but I also never imagined that by his sophomore year he would have already been to three proms!  Now I wonder how many dances he will attend by the time he completes high school.

When he’s happy, I’m happy. Isn’t that what all of these milestones should be about anyway?

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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