In one day in 2015, I learned these three things:
- I was pregnant.
- There were no genetic answers for Tophs’s challenges.
- There was a genetic finding we weren’t looking for.
I wrote about Tophs’s medical history here–about searching for causes of his growth failure, hypoglycemia, and developmental challenges. I didn’t write that in one phone conversation, hours after I took a pregnancy test (on what I thought was a whim), his genetic counselor gave me one result from the genetic test that she was certain about. One that would require action.
He and I shared a BRCA2 gene mutation. That means we have an increased lifetime risk of getting certain cancers. That means I practice saying, “You remember that Angelina Jolie op-ed? Yeah, it’s sorta like that.” That means I see an oncologist now to avoid or change the later. It means I consult a plastic surgeon to view before and after photos. It means I try to figure out what God wants me to do with information I didn’t ask Him for but that I think I am thankful I know.
It’s been quite a year.
And I’ve tried to make some of this into art. Because I think this information, these mounting experiences and emotions, even the annoying mammogram machine, itself, could be painted across a high ceiling and capture the gaze of folks passing by. Just like the genetic counselor said my strange family history “warrants” further genetic testing, this journey “warrants” a proper narrative arc. It deserves the creative part of creative nonfiction, deserves at least to smell a bit like literature. But, for now, it’s medical appointments and a folder of envelopes and imaging results and it’s IEP meetings for Tophs and walking forward because I’ve asked God to be near all along, so why wouldn’t He be now?
So this post is serious, because we’ve just moved, which means we just finished a round of tough IEP meetings for Tophs and said goodbye to the amazing teacher who knows him almost as well as we do and would chase the moon for him. So I’m a little in my feelings. But trust that coming soon(!) is the man dressed head to toe in Confederate gear (that stars and bars vest doe!) I encountered on my very first trip to the Emily Couric cancer center. God is a brutha, y’all. The owner of Robert E. Lee Outfitters standing there in the lobby. You can’t make that up.
My mind works in images, and when I pray and see myself, I think I’m walking a little like Jacob. Now I can eisegete the heck out of any scripture, so I’m not saying I am like Jacob in any other way but the limp. For nine months, I walked with the baby, and I couldn’t see through the nausea. Then the baby came, and I loved her and didn’t sleep. Then the baby grew, and I still didn’t sleep. But I am starting to have a little more space in my brain to let these findings–and the answers we didn’t find–register. I’m beginning to acknowledge that I’m a little hurt. The next step is to pray. To see how God would have me walk this out.
It’s not the type of thing I’m looking to be cast out. (After all, I can’t erase the day we rushed Tophs to the ER with a blood sugar level of 27. I can’t change that my heart dropped onto the floor when the genetic counselor told me she had a secondary finding from Tophs’s test to share with me.) It’s the type of thing I’m looking to walk through with Him and with community. Some of you already know. At least one of you has bought me Mr. Pibb. Some have prayed. Several have come near whether I’m feeling hurt or hopeful or being sarcastic and avoidant. One of you has both encouraged me to write and been patient when I couldn’t. One has poured your life’s work into me to reassure me. Thank you.
One day, art. For now, this.