Flashbulb Memories

Chrystal posted today about a newly published guide for physicians concerning delivering the diagnosis of DS to parents.

In the guide, the term "flashbulb memories" is used. This term refers to events in one's life that can be recalled with almost photographic detail, even years later. Like remembering exactly where you were and maybe even what you were wearing when the events of 9/11 unfolded in NYC.

And the fact is, receiving a diagnosis of Down syndrome for one's child - either prenatally or postnatally - is indeed a "flashbulb memory" for most parents.

My memory is actually a series of smaller "photographs," because we sort of found out about Finn's Down syndrome gradually.

In the first flashbulb memory, I am sitting at the edge of my bed, holding Finn on my lap, facing me. I am wearing a pale blue nightgown with tiny flowers on it (I wore the very same nightgown after Lilah was born). Finn is not quite 14 hours old. Sue, my midwife, is there, also sitting on the bed with me. She had come back to our house for the first post-partum visit. She's talking, but I can't remember what she was saying. I'm looking at Finn, who has mostly slept since he was born. Now he opens his eyes . . . and turns his head just slightly . . . and from that angle . . . a little voice whispers in my head "He looks like he has Down syndrome." I'm certain that my heart skipped a beat. But I quickly brushed the thought aside. It was unfathomable. I had already experienced more than my share of hardship and tragedy during my life - something like this just wasn't in the cards for me.

In the second flashbulb memory, it is only moments later. Sue is examining Finn on the bed. She has text books laid out. I remember thinking, "That's strange. Why is she being so much more thorough examining Finn than she was with Lilah?" I didn't say anything though. Then she shows me the single crease across each of Finn's palms and tells me that I may want to mention those to our pediatrician. "Why?" I ask. Carefully, she tells me, "Sometimes it can indicate certain anomalies." "Like what?" I ask. But I already know what she's going to say . . . because I already saw it in his face. And she says to me, "Down syndrome." I'm certain that I momentarily lost the ability to breathe.

Shortly after that, Finn started spitting up blood and we had to rush him to the ER. By the time we got there, I think I already knew in my heart that he had DS, even though over the next several days I prayed to a God I don't even believe in to please not let it be so.

The next flashbulb memory is this: I'm at home and the phone rings. It is the geneticist. Michael is at the hospital with Finn. It is 4 days since Finn was born, and 3 days since Finn had surgery to correct the duodenal atresia he was born with. I carry the phone downstairs where it's quiet. I sit down on the futon. The geneticist tells me that the workup done on Finn has confirmed that he has Down syndrome. I can't breathe. Tears leak silently from my eyes. A sharp pain radiates in waves from the base of my spine, up through the back of my neck and into the base of my skull. I was not recovering well after Finn's birth, physically speaking, and this radiating pain in my back was a recurring thing. Michael was worried that I may have meningitis. I was starting to think it was my body's response to stress and trauma. I am suddenly in so much pain that I can't speak. I whisper into the phone, "Yes, okay, thank you." I hang up, and start sobbing.

The memories are painful, and I know they will stay with me for the rest of my life. However, I honestly can't think of a way that receiving the diagnosis could have been made better. I am grateful that the first inkling was delivered by Finn himself, and that the second inkling was delivered by my midwife. The geneticist was extremely kind and sensitive, so I have no complaints there. I have said before that I am glad that we didn't find out about Finn's DS until after he was born. I'd like to believe that I would never have considered abortion - I truly can't imagine it. But I also don't know what it would have been like to be told by a doctor, while I was still pregnant, and a doctor who most likely would have advised abortion, as I understand that that is the popular position of doctors. I've developed a growing distrust of doctors - especially OBs, as evidenced by my choice of a midwife-attended homebirth - so I'd like to think that had I been given the diagnosis prenatally by a doctor who would advise termination, that I would have told him to go to hell and stormed out of his office dramatically. Who knows.

All I know is that it happened the way it happened, and really, although the memories are painful, I can't imagine a way I would rather it have unfolded.