The past few days have been very emotional for me. What I thought and hoped was a possible breakthrough for Daniel’s health has simply turned into another medication that does not work effectively after a couple of weeks. Daniel has dived headfirst back into a cycle of 15-20 hours of sleep each day. Yes, we now know what causes it, and the rare disorder of Kleine Levin Syndrome has a name….but it does not have a cure or a predictable treatment plan. The reality is that we will be dealing with this cyclic, maddening disorder for several more years before it will disappear and never return.
My faith is intact, solid and strong, but the reality remains that some days I still cry and grieve for the child I should have right now. I should be teaching him to drive and picking his homegrown tomatoes. I should be proof-reading his summer English paper and nagging him to keep his room clean. I should be teaching him to be a fine Christian gentleman before he enters the era of dating young women. Instead, the reality is he sleeps all night, most of the day and wakes up groggy and lethargic. His bedroom is used only for sleep instead of studying and we haven’t had a garden nurtured by him in two summers now. I miss him! I grieve for the huge chunks of time he has lost to this baffling neurological disorder.
The reality is we cherish and absolutely adore the moments he is “with” us and alert. We never know when we’ll get these moments or how long they will last. Several people have told me that I should remain positive because there is an eventual end to this crazy illness. Yes, it should end on its own, but we don’t know if it will be a year from now or up to twelve years from now. Frankly, when you’re standing right smack dab in the middle of it, two to four years from now seems like an eternity.
The harsh reality is that we have to make some very difficult decisions about his education and medical treatment. Will he be able to keep up in the governor’s academy? Should we put him on homebound instruction? Should we try another medication? And the questions go on and on and on…and I’m tired of being strong. I want to be able to hug him, kiss him on the forehead and send him out to play like I did so many times when he’d come toddling in with a boo-boo. Yes, I am so ever grateful this syndrome is not fatal, but it’s still here and it won’t go away for a very long time.
The emotional reality is that an illness of this nature affects every family member, affects a family budget, and affects every kind of family outing/event. I deeply appreciate every moment he is able to participate in a family gathering; even if it simply eating hot dogs and mac’n’cheese for dinner with us at the table. I’m learning to not deeply grieve every time he simply can not get out of the bed and reassure myself that, at least now, we know why he does this so frequently.
I don’t know what the future holds, and neither does the neurologist who now treats him. I do know she is our advocate and will do anything within her power to help Daniel get better and to deal with school. After visiting fourteen different specialists, it is a relief and a tremendous blessing to finally have someone on our side and understand that this is not his fault. One day I will look back and know how much God has carried us through, but right now, the reality is I’m letting Him carry me through this time because I’m too weary to walk. The reassuring reality is it’s really okay to see only one set of footprints in the sand.