Raising My Angel Is Teaching Me How to Wait More Patiently

Parenting a child with Angelman syndrome can have unexpected results

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

Share this article:

Share article via email
banner image for

There’s nothing easy about waiting. Before I became a parent, I wasn’t the most patient person. But a diagnosis of Angelman syndrome (AS) in our family changed that.

Since we began living with Angelman syndrome, I’ve gotten better at waiting. Such was the case last week as I waited for the X-ray results of my 12-year-old Angel, Juliana, to check for scoliosis.

For now, we have nothing to fear in terms of scoliosis. Juliana’s spine is looking great. I hope she’ll never know the difficulty and pain the disease can bring. Hearing this good news was music to my ears. An even better sound was when the doctor simply said he would see us in six months. I’ve since put scoliosis out of my mind for a bit.

I’m still celebrating that we’re not facing a new crisis. I try to deal with the challenging behaviors and uncertainties of AS as they come. Soon, there’ll be another hiccup that’ll require a pause and probably more waiting.

Recommended Reading
GI symptoms | Angelman Syndrome News | illustration of digestive system

Study Links Worse Angelman GI Symptoms to Problems in Infancy

‘Time After Time’

Sometimes it feels like I’ve been doing this hold-off dance for a while. After fostering and then adopting Juliana, we waited to officially become her parents. When a series of seizures landed her in the hospital, we suffered through several days of uncertainty until the doctors finally confirmed it was Angelman syndrome.

More time was marked as we waited for Juliana to walk. And just now, we went through waiting to learn that Juliana didn’t have scoliosis.

After her back was X-rayed, Juliana watched her iPad while I simply sat quietly until we got the results. I didn’t feel like reading any magazines or searching for anything on my phone. Instead, I said a little prayer, hopeful that all would be well. More than anything, I felt calm.

Juliana sits on a green chair at the doctor's office looking down at her iPad. Her orange T-shirt matches the otherwise orange furniture.

Juliana enjoys her iPad while sitting in the waiting room with her mother at the doctor’s office. (Photo by Sabrina L. Johnson)

Wait a minute

I knew that if bad news were coming, I would face the next steps head-on. I thought about all the waiting my husband and I have done over the past 12 years. It hasn’t been easy. But I now see that in the midst of it all, a great change has been brewing inside me: The person I was before AS never would have patiently waited like this.

Sometimes good things come to us when we wait. At other times, waiting brings outcomes we didn’t want or expect. Years ago, I heard an amazing sermon about what happens when we’re waiting for answers. The message was titled “The Waiting Room.”

When we’re waiting, we forget about all the opportunities that arise before the end result appears. Growth and change happen. I don’t know what will happen next, but with AS, it’s always something. Yet while delays might be uncomfortable, it’s good to know that I’m not simply biding my time as the clock ticks on.

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.


Leave a comment

Fill in the required fields to post. Your email address will not be published.