In our constant search to help our teenage son feel better and to help us cope as his parents I do significant research on his rare illness. All the research leads to facts of no known cure, no known treatment and recently, a statistic that literally blew me away. His disease of Klein Levin Syndrome is so rare it is literally in the million to one chances of someone getting this syndrome. A million to one…I have a better chance of winning the local lottery than it would be for our family to be affected by this illness. It would be oh so easy to fall into the poor pitiful me trap of “Why does it have to be our son?” to be the chosen one in a million. I don’t have the answers and I’ve cried enough tears to fill a bucket, but the facts don’t change. For some reason, beyond our control, our brilliant young son has lost most of his teenage years to this mysterious illness.
The fact is our world revolves around his health and savoring every “good day” that comes along. On the days and nights where he sleeps and sleeps we carry on our normal routine as best we can. I’ve learned to go to work without crying now. I’ve accepted the full force of grief and go with it now against of fighting against it. It took me a long time to realize I was grieving; for awhile there I honestly thought I was losing my mind. I grieve for what Daniel could be and what this illness has taken away from him. He is no longer able to run, is unable to get his driver’s license and sleeps away his high school years with no extra involvement in any activities. I grieve for his potential that has been erased by this rare syndrome. Forgive my parent “bragging rights” but he easily could have be the valedictorian of his class, but instead his whole high school education and college plans are completely scrapped for now. We should be visiting colleges and renting a tux for the prom, instead we are fumbling through day by day not knowing answers and so wanting him to feel better.
A million to one, and we are the ones coping with a syndrome that has uprooted our entire lives. A million to one and I am thankful it is not fatal, and he will eventually get better. No, this is isn’t what we planned, it’s a road we didn’t even know existed. The fact remains we have to deal with this whether we want to or not. We have to deal with the naysayers who mean well, but have no clue what it’s like to cope with a chronic illness. We also have to deal with the ones who say to us, “If it was my son, I would….” Well, he’s not your son and we’re doing the very best we can. Yes, we’ve made mistakes along the way, but that comes from pure desperation of wanting your child to be well.
We stand firmly in our faith, knowing, believing and confirming that God is in total control. He will carry us through this time and will provide for every need. This is not blind faith or feel good optimism, this is the rubber meets the road faith when you’re tested to your limits, pray in silence and cling to every single promise of God. No, it’s not easy, it is not joyful, but He is good and He will come through even when I don’t think He will. He is God, He is Sovereign and He gets to choose the million to one. I choose to humbly bow before Him, praise Him even when I don’t “feel” like it. He is using our family as His million to one and I trust Him. No, I don’t understand it all and it’s one of the most heart wrenching journeys I’ve ever experienced, but I know that I know He is good. Jesus loves me, for the Bible tells me so.