We have an answer, a diagnosis to hang our hat on, and we are still trying to process all of it. Daniel has been diagnosed with a very rare neurological disorder called Klein Levin Syndrome or sleeping beauty syndrome. You would think after these very long two years I would be dancing across the room with joy; instead, I am stunned, relieved and still trying to wrap my brain around the confirmation. It’s sort of a good news/bad news situation. The good news is we have FINALLY found a neurologist that is working with us and not looking at us like we’re absolutely crazy. It is also good news that this mysterious syndrome leaves within 4-8 years on its own as gradually as it crept up on him. Daniel is taking an experimental drug that’s never been used for this syndrome and he’s the very first case by our neurologist. So, he may be famous one day in a medical journal!
On the other hand, honestly, the thought of him being chronically ill for the rest of high school and maybe into his college years sends my knees into buckling mode and my chest into heavy sobs. I’m really not being negative, I’m truly trying to face the reality that this is the way it will be for at least for 2 more years. Maybe I should adapt better, maybe I should keep my chin up and move on, maybe I should be overwhelmed in gratitude it’s not worse. The fact is emotions are swirling within me, and I still have to be mom no matter what the situation.
So, I choose to move on, acknowledging there will still be some very tough days ahead. I choose to be grateful my sweet son will eventually get better and does not have some fatal disease. I choose to keep walking, head up, and feet forward. God loves me, he loves Daniel and He WILL take care of all of us.
Family dynamics are so obvious when you have to absorb news like this. Daniel and Clif are the strong, stoic types and simply accept and move on. The girls and I want to talk it out, cry about it and then talk about it again until no more words can be spoken. Neither is right or wrong, but it’s so interesting to see how we all handle things living in the same house. Sometimes, I just don’t feel like talking anymore and just want to sit with my coffee cup, but that is a luxury I can not afford with laundry, dishes and life surrounding me 24/7.
Our constant prayer for a diagnosis has been answered and I am so grateful. Just knowing that it has a name and I’m not a crazy mom is relieving. God has carried us through and now, more than ever, we are totally dependent upon His mercies that are new everyday. Praise His Holy Name for He IS good!