June 1, 2020 - The KLS Project

Pain and Guilt

Given the option to continue training without the surgery to correct my ACL in December of 2015 or to have the surgery again with the same outcome, I’m not sure I’d do it again. Of course, I’d hope to be more mentally present as my son declined in health but there’s no guarantee that it would play out that way. When I chose to go into surgery for my knee,

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.

Day: June 1, 2020