Two years ago this summer Garreth and I were preparing for Aidan’s spine surgery. There were a lot of logistics and emotions to deal with. Strangely enough, hospital visits are the sweet spot of our marriage. We function well as a team and find the ability to be tender and kind.
Two days after Aidan’s spine surgery, when I came home and Garreth was on duty, I got a call from our geneticist saying she had a diagnosis for Aidan. There was still very little information available as the two teams of doctors that had diagnosed other kids with PURA Syndrome were in the final stages of publishing their papers. I didn’t know other kids with PURA were out there and it never really crossed my mind to consider the impact. I was comfortable in Undiagnosed World, had made friend in CP Land, and felt scared but supported among the Epilepsy Warriors.
I was focused on Aidan’s recovery and was feeling relieved that a spinal fusion was a cake walk compared to hip surgery. I didn’t give much head space to Aidan’s new diagnosis. I was more happy for our doctor to have something to write down than I was to have any sort of direction for Aidan’s care.
So much has happened in two years. Families with PURA began to find each other. Doctors and researchers have begun to collaborate. I’m a founding member of the newly formed PURA Syndrome Foundation.
I’ve struggled a lot this year with how my identity is tied so closely to Aidan’s and how his is tied to a diagnosis. I am more than a caregiver, more than a mother, more than his advocate. Aidan is so much more than a diagnosis. He is not a list of symptoms or warnings or phenotypes. He is capable and smart and challenging and fun. Sometimes I wonder if I spend too much time considering and fighting for a better quality of life instead of just living it.
I’m headed to our first official PURA Syndrome Conference in London this week. There are emotions and logistics to deal with. There are lists in my house being checked twice. As I said in an email to our medical team, “I’m energized, overhwhelmed, exhausted and excited.” It seems just right that I will be speaking on the Both/And experience of Disability World. I’ve held a lot of conflicting emotions in these years. I can be both done with being a mother and love my children with my whole heart. I can feel both scared to have another damn seizure filled day with Aidan and privileged that I get to be the soothing voice in his ear. I have stood in a rippling pool of hope while I’ve wrestled so vigorously with grief.
I’ll go to the conference with my passport and bags of stuff and hopes and expectations and nerves. Then I will come home joyfully depleted and overflowing. I will be both grateful for the new friends I made and my 2am people who hold down the fort for me all the time. I will be both present to these meaningful moments with Aidan and incredibly hopeful for his future.
A lot can happen in two years.