blindness Archives - The KLS Project

The Last Trip to Wallwood

In June of 2016, Boy Scout camp at Wallwood ended. I had been shuttled to parent night at camp by another scout parent, just before my eye surgery. I sat on a bench talking with Erica, another scout parent, who is visually impaired. She became my guide into the world of the minimally sighted. Honestly, my having a partially sighted friend during my temporary blindness helped me keep perspective. She

Jonathan Lyons with an eye patch sword and toucan.

Detour to Eye Surgery

The weekend passed without incident. I was bored nearly to tears, except for the abject fear of impending eye surgery. I spent most of Saturday on the first weekend of June 2016, asleep because of my late visit to the hospital. Sunday, I sat around the house, afraid to overexert, as if my sacrificed time could somehow save my travel plans. Barbara drove me to the doctor’s office on Monday

I undertook The KLS Project as a labor of love and a personal memoir of our family’s journey with Kleine Levin Syndrome. I have been writing about KLS for since 2017, recording my memories, posting questions where they might produce an answer and eventually answering many of those questions myself.

Our journey is unique. Yet, the National Organizations for Rare Diseases (NORD) estimates that about 20% of people have a rare condition. Even more have learning disabilities and struggle to access education and the goal of a Free Appropriate Public Education.

Ultimately, I write my story about the challenges of parenting. Some aspects of the story contain exceptional circumstances but most of the solutions come from love, honesty and constantly assessing expectations.

You may want to read these posts in chronological order, but nothing says that you have to.

If you are wondering. The child in the header photo is not my child. It is a stock photo.

Tag: blindness