AE makes us “wiser, wearier and stronger”

I recently read an article about myself in the New York Times—well it wasn’t my name or my child but it was my story. Sandra Joy Stein wrote the article titled “Becoming the Parent With the Child in the Wheelchair.”

I don’t know Ms. Stein personally, but I know her life. I had a young child with autoimmune encephalitis. I remember a moment much like hers while walking Florence in her adaptive stroller around Duke University campus. I needed air and had no help at home for Florence. So I bundled her up and buckled her in the stroller and off we went. She was a little grouchy being cinched into position to keep her head and body upright by the stroller.

Florence and Family_StrollerI thought the walk would help. But it was a crisp fall day and others were out too with kids and dogs. We got the looks that you dread in these situations.  I couldn’t help but think that my child was running just like their child not long ago.  And I could have been those moms, redirecting my child from staring at the child in the adaptive stroller.

Sandra, Helen, Jennifer, Deborah, Mary, Natalie, me and many more mothers, fathers, siblings, grandparents are now stronger and different people for enduring the tough road of having a healthy child turn into a sick child.

And sometimes that road begins a new journey… one that you never thought was in your future. Our journey has led us to start the Autoimmune Encephalitis Alliance.  It led us to organize the Florence Forth road race. We want to help other families facing this disease and find a cure.  I’ll leave you with a quote from Sandra’s story, “my child’s illness has not made me an angel, but it has made me wiser, wearier and stronger than ever before.”  Thank you for sharing Sandra.