Tim suggested I write something about this painting of our daughter Temma, titled Rapt, meaning paying rapt attention. This is a state of seeing, listening, waiting, wondering, for something that is coming, like Advent. Temma seems to be ever in the season of Advent. Today, as we cross over once again from Advent to the season of Christmas, into the Word made Flesh, I can say with full confidence that in the one who is rapt, the Word is made Flesh. She doesn’t know it, or maybe she does? A spark of holy life residing in her flesh.
Recently, we told Temma’s birth story again to a another new doctor for us, this one a doctor of genetics. In trying to best treat Temma’s seizure disorder, her neurologist requested genetic testing be done. We have not had genetic testing since Temma was first in the hospital with a cardiac arrest thirty-six years ago. All the testing that was done in those first weeks of life after death came up negative with any diagnosis of why her heart had stopped or why she was having seizures then. Maybe now, this many years later, something new may be found.
Its difficult to retell the story, always is and always will be, because it means re-living the trauma once again. This doctor was good in her listening and acknowledgement of the trauma. She explained that we could choose to first have only Temma’s genes tested and if the results left questions that then our parental genes could be tested. Or we could choose to have all three of our genes tested from the start.
“Some parents choose not be tested up front, out of fear that ”fault” will be found and blame assigned to one parent or the other, and/or that something will be found that you might not have wanted to know like a genetic inheritance of dementia,” she explained.
“We’ll go ahead and test all three of us,” I said, looking at Tim and receiving his assent. My thinking was that I had already worked through so much blaming and faulting myself for Temma’s disorders, and that finding some genes of inherited illness might be helpful at this point in our lives. I had already asked my prayer sisters to pray that, depending on results, I would not be overcome with new guilt. What I had not anticipated was pain of retelling the story complete with mistakes and “bad” choices made.
After we finished the consultation and were off the Zoom meeting with the doctor, Tim said, ”You know going through all that again I could say ”Oh, I wish I had done this or this, or that differently, but it is what it is and Temma is who she is.”
I looked at him and looked at Rapt Temma and I nodded. ”That’s true.”
Today, on Christmas Day, having passed through another Advent, I think it’s like a fallen angel dropped into our life, a creature of God’s glory with some skin on. Like Mary I keep all these things and, with rapt attention, I ponder them in my heart.
Your courage and faithfulness is a wonder to behold.