What was made clear was that parenting a child diagnosed with KLS is significantly different than parenting a child who isn’t diagnosed with a medical condition. It isn’t how you treat them daily that makes it different, but the degree of involvement a parent plays in day-to-day life. “At a time when you generally begin to let go and give them more independence and freedom to do things on their own. Instead, you spend more time actively encouraging earlier curfews, focusing on their eating, sleeping and physical activity levels, which you hope limits the sleeping episodes.”
Another huge adjustment from parenting Jake, my older brother, to parenting me is the need for a flexible schedule because on any given day, the possibility of a KLS episode is there. My mother explained that during an episode, rather than starting her morning early by going to the gym and running errands, she would be home all day just waiting for me to wake-up so that she could make me food and feed me quickly enough knowing that I could go back to sleep. Additionally, while I am asleep, she is talking to a KLS parents support group on Facebook. This group gives the parents a refuge, a sanctuary to have the backing and support of others in the exact same situation. “It is quite comforting to have these virtual friends, since it can feel isolating not having anyone who truly understands what you and your child are living through and being alone so much of the time.”
When an episode ends, my mother points out “you knew right away because he would begin using social media and begin talking and using his “real voice”. During an episode, if he did speak it was a different voice.” She explains that during an episode it isn’t truly me, that my actions, muted responses, and state of being was altered.
In addition to the challenge of taking care of a child with KLS during and after an episode is the difficulty in getting a proper diagnosis. However, after finding a doctor who knows about KLS and getting a diagnosis it is in some way a relief. “When we didn’t know what was wrong with Tyler, we went to many doctors and he had hundreds of blood tests. It was frustrating; although, at the same time a relief because more typical serious things were eliminated from possibility. It made it easier knowing what Tyler had, even though, there is no treatment and it is unpredictable. The thing that has gotten me through these past years with Tyler having KLS is that it won’t last forever; he isn’t in any physical pain; it isn’t life threatening and how inspirational he has been throughout the past few years. He never sat around feeling sorry for himself. Tyler would make a plan on how he was going to make up work and did it. There was a time, his junior year, since he had so many episodes and so frequent, we offered to him to skip the year and start again the following year and his response was no! He wanted to graduate with his friends and go to a college that he was capable of getting into. ... Pride, joy, inspiration, and love can only begin to describe how I feel.”