Last Saturday, Coley, June, Laurel and I attended Epilepsy night at Fernbank Museum of Natural History. The event was put on by Children’s Healthcare of Atlanta. It included dozens of doctors and dinosaurs to explore. Amongst the highlights of the event were booths for equestrian therapy and seizure detection dogs, one on one meetings with local neurologists, free food (holy crap, the cookies), access to fernbank play areas and a building full of humans with epilepsy.
I learned a few things from the event. First, I had no idea going into this event that scientists had isolated three organic compounds present in the brain prior to seizure occurance that dogs can be trained to smell. I knew of the existence of seizure dogs, but had no idea how this worked. Fascinating. The thing I don’t fully understand yet is why we cannot isolate these and prevent seizures in our medical practices. I’m sure I’ll learn more about this later.
Coley and I spent about twenty minutes purusing the booths, picking up pamphlets and talking to the experts before heading to our appointment with Dr. Koh, Juniper’s new neurologist. As I mentioned in a previous post, unfortunately for us, Dr. Luke accepted a new position in Texas and we have to move on.
Our first encounter with Dr. Koh ( at the tail end of our last meeting with Dr. Luke) felt rushed and impersonal. This time, we had a chance to sit down with Dr. Koh in a less formal environment and get to know her a little better. This time her personality and level of engagement drew me in.
Dr. Koh is an older woman with a warm face and a relatable, humble smile. We told her of Juniper’s gene deletions and of her history with seizures. She expressed empathy and understanding toward us, excitement and enthusiasm towards Juniper.
While Dr. Koh gave us more hope than advice in our short time together, that is what we need more of right now. She expressed encouragement with Juniper’s progress and capabilities. She reached out to my little girl and June responded with her usual degree of deep, direct eye contact. I could tell Dr. Koh saw something special in her - this, above all, that told me Dr. Koh might be a good fit. She offered us one of her “secret availability“ appointments. We will see her again next Friday. I look forward to it.
After our appointment with Dr. Koh, we visited both the indoor and outdoor kids play areas at Fernbank. This was another world of heartbreak and hope for us. While Laurel ran around under tunnels and climbed up the slide, Coley held June up to play a small xylophone. June’s legs quivered as her knees and ankles locked in place. Her feet buckling with the weight of her small body as they slanted outward from hyperpronation.
I worried about her not being able to run wild on the playground and then I reminded myself that she was playing music. June is always playing music for those that choose to listen. She has something to teach us all that could only come in barely audible rhythmic melodies. The kind we seek out as we search for peace and understanding.
Someone once said: “Those who dance are considered mad by those who cannot hear the music.” June, don't worry little buddy, I’ll always find a way to listen and we'll always find a way to dance.