October 26, 2020 - The KLS Project

Visitation Rights, KLS Haiku #3

The third poem in a series from 2017 explores that feeling that KLS takes our own children from us and leaves us to care for someone who isn’t quite the child that was there before. Parents of children with Kleine Levin Syndrome express this sentiment in conversation and our online support group.

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: October 26, 2020