August 14th of 2007 was the day I sobered up. Larkin’s Neurologist at St. Louis Children’s hospital is someone I admire, trust and respect. He stopped into Larkin’s room in the early afternoon. He had a very busy schedule and we had not expected to see him at all. The diagnosis of Lennox-Gaustaut had been delivered by another Neuro the evening prior. Dr. Zempel took the time to come to our room and sit down and talk with us.
We had few questions. We already knew what LG was because of the Brown family. My grief was still in my mouth and I was trying to come to terms with it. Dr. Zempel was kind, loving and encouraging. However, there was one part of the conversation where I sat up straight and tall inside – sober without any booze in me. He gently told us that children do die from these seizures. That they can’t explain the why – but it can and does happen. It was the first time where I had a doctor look me in the eye and make me face the real fact that I could lose my girl. In the past 2.5 years I know when Doctors are laying the ground work. I hear in between their lines and words. It’s difficult for a parent to do that but apparently I have a gift for it. Why can’t I have a gift for playing the piano or using my toes to paint?
The old phrase “find a place for the disability and put the disability in it’s place” came flooding back to me. Down syndrome – it’s nothing to sneeze at or dismiss but when it comes to seizures – we got a whole new ballgame. In fact – we have a whole new sport. I have run into so many people lately that have told me stories of seizure disorders. I realize in listening that the fear we experience is so extreme that it almost eclipses words. I can’t put into the exact right words how terrified we were and at times…..still are. I remember the exact moment that L’s seizures returned after having them under control for 6 months. I remember how my insides heaved and I couldn’t breathe. But I did breathe and my insides are better.
The more stories I hear. The more people open up to me and spill out that fear…the more I realize that we are on more common ground then I ever knew. Disabilities affect us all in one way or another. It’s 1 -2 degrees of separation. And by separation I mean fractions. My world is getting smaller the more I reach out.
I enjoy the days and nights, smiles and hugs, laughter and giggles just a little bit more. I listen for her singing in the mornings. On the drive home yesterday from baseball Chase and I were listening to a comedy channel. His laughter can bring me to tears. Take the time today to listen – really listen – to your spouse, child, parents, siblings, the birds whatever you take for granted. Stop. Listen. Absorb. Feel. Most of all….enjoy it.
Today’s text from the Psalms: He keeps my lamp burning and turns darkness into light.