A 327 day journey ended in 49 seconds. I could see his face in my daydreams. Chubby cheeks and jet black hair. I imagined his weight, I could feel him. Nursing him. His smell. Bathing him. He existed. In our hearts and in a Petri dish. Two of them. Boys.
I don’t like medication that treats the symptoms and not the cause. That just isn’t how I roll. But when you’re dealing with a rare medical condition, your choices are limited. Funding isn’t there for research and there is no sense of urgency when so little of the population is affected. Our choices are limited. In fact, we have a single choice. Klonopin or nothing.
Continue reading “Hyperekplexia and Klonopin.”
Have you ever read the poem IF by Kipling? You should. It is powerful. My brother shared it with me during a difficult time many years ago and I have read it countless times. A copy hangs on my fridge and at my desk at work. It’s malleable; applying to a myriad of challenges. It is motivational. And positive.
If you can fill the unforgiving minute, With sixty seconds worth of distance run.
That is how I’ve felt as of late. I’ve been filling a lot of unforgiving minutes. I’ve not made time to write because life seems busier for some reason. And I’m making a lot of adjustments. My routine is being redesigned and I’ve not found the space where writing fits in.
He is just six years old but he’s lived quite the adventure thus far. He is a tenacious child with a magnanimous smile. He is sensitive to the world around him. He worries. He has a thirst for knowledge and an excellent vocabulary. He’s practical and creative. He will pull you in and captivate you. He has been challenging me since 20 weeks gestation. One day I will chronical our journey. Just not today. Today I need to write about him and his falls.