Some of you may not know this about me…but for the last six or so years I have been working (on and off) on a PhD in Communication and Rhetoric. Since Ez was born completing this project seemed pretty unimportant…and I have periodically let that part of me–the professional academic part of myself– all but slip away. But over the last five months, with tremendous support from my family, Esmé’s caregivers, and my dissertation committee, I have been completing the manuscript. Last Monday I successfully defended my dissertation. Pending a few pretty minor edits, I am done–I’m now Dr. Maman.

I sort of can’t believe it…It has been a long journey. Hang with me while I digress…

The house where I grew up–the house my father built from nothing–was approached by a long walk down a somewhat steep hill. The majority of the walk was just ground depressed and hardened by years of us walking there. As you got closer to the house a lovely brick walkway welcomed you…on either side were my mother’s spectacularly overflowing gardens tamed by small stone walls.

I don’t know if my father had intended to bring the path all the way to the top of the hill where we parked our cars…but it worked as it was, delineating the cozy area right around our home as part of the house, separate from the other areas on our 40 acres that we claimed less and less as we moved further from our house and into the fields and then the woods.

While as an adult I cringe at the thought of negotiating groceries and kids down that long path, as a child I loved it, I distinctly remember getting out of the car at the top of the hill and running, full-speed, down the path…likely accompanied by our dog, Tudor. And in the almost pathological joy of childhood I fairly consistently forgot about change in surface where the bricks began as I approached the house…bricks that worked themselves into a rolling surface with edges that formed peaks in the middle of the path.

If you walked slowly, the path was not a problem, but in my shuffling sprints, the bricks seemed to jump up to catch my toes. And I fell countless times. Over and over and over. Between that path and my tree-climbing habit, I think my knees were skinned almost constantly. And while I was sort of rough and tumble as a kid, I was also a bit of a baby. I’d cry when I would skin my knees…but I wouldn’t stop doing the things that skinned them!

And my father, in a kind of wisdom that is born from being a guy raised on sports and who wants to raise a strong woman from his little girl, would tell me to “walk it off.” Like he was my basketball coach and I had jammed a finger during the “big game”–and they needed me to make at least one of my free-throws.

At the time I thought he was a bit mean. I wanted him to sweep me up in his giant arms and hold me close. I wanted him to magically make it all go away. And, mind you, on the rare occasions that I was truly hurt or sick, he would do just that. But, when I wasn’t really hurt, he was intent on giving me a different kind of gift…it was the gift that told me to get right back up, dust myself off, and get back to things.

I have never appreciated this gift more than this year. I have a daughter to whom I will likely never have to say the words “walk it off”– because “walk it off” is her natural state of being. Ezzy has been walking it off since she drew her first breath.

It has been almost one year since Esmé’s diagnosis. A year ago I was still petrified of life with Esmé. While we were starting to see a reduction in seizures, we all still spent the next 6 months holding our breath, waiting for them to come back stronger, worse. We worried about this while monitoring chronic infections with no apparent cause. And while epilepsy is still very present in our home whether in her small daily seizure-y behavior or in the clusters of seizures that still come (one cluster last week, in fact)…it is no longer completely ruling our lives…or Esmé’s body. Her infections have greatly diminished. We have some other medical issues to keep working on, but she is developing, learning, and, most importantly, laughing.

And, honestly, I feel as though I am finally learning to walk it off. The last 6 months especially have had me feeling like I have finally dusted myself off…like I am no longer waiting for someone else to come and make it all ok. Starting The Cute Syndrome Foundation has been a big part of that…meeting our fundraising goal in 5 months, traveling to Rome for the conference, planning the first annual PCDH19 Awareness day and seeing all the amazing Awareness Day purple balloon photos…and all my friends changing their profile pictures in support of Ezzy. It has been nothing short of amazing. It all made me think about what happens when you dust yourself off and look around to see what needs to be done. Ezzy’s diagnosis certainly knocked me over. But it has also opened my eyes to all sorts of possibilities. I won’t say it has been simple or obvious or without pain…but it has been great.

In that same spirit, last week as I (finally) defended my dissertation–a project that I thought would never be completed…a project that I thought would haunt me forever as that thing I didn’t have the grit to power through–I glanced around the room and saw my committee looking back at me in this ceremony in which I walk in their student and leave their peer, I couldn’t help but think how much of a better project it was because it wasn’t my entire world. It was a better project because I got knocked over by it, by life…because I appreciated the creation of it so much more than I might have, more, even than the fact of the project.

Now I realize what a gift my father’s “walk it off” was — he was trying to show me strength in the face of difficultly and more than that, he was trying to show me gratitude, gratitude that my skinned knee wasn’t a broken leg, and the feeling of accomplishment when you don’t give in.

Leave a Reply