I saw one of my favorite people last night. We met when our oldest kids were in diapers, through a Meetup playgroup in our area. The group dissolved, but our friendship remained. It was one of those instant clicks when you meet a new person and think “Oh yes. This person is my person.” Much to our delight, we both became pregnant at the same time, with only six weeks separating the due dates for our second children.
Quentin was born first, with her daughter following. Her baby failed the newborn hearing screening, which wasn’t overly concerning as it happens, but then failed a follow-up screening. A few weeks later, I met her at a park and remembered sitting with her as she held her baby and told me that her pediatrician thought her daughter might have some type of syndrome. Testing confirmed this, revealing 18q Deletion Syndrome: part of her 18th chromosome was missing, a very rare condition.
We talked a lot in those early days. Looking back, I have no idea if I said the right things. There was a range of how individuals with 18q- would be affected, and no way of knowing the outcome until her daughter was older. I often felt guilty when our kids played side by side, acknowledging the unknowns that she was facing.
When I lost Iris, she came to the hospital and sat with me while I was enduring the long hours of labor.
After losing both of my girls, we had a night where we had gone out to dinner and then come back to my house and were drinking wine. Probably too much wine. Suddenly the tears were flowing from both of us, her with so much anguish over her daughter’s condition and mine over never getting to meet my daughters or watch them grow up. I think we were both hurt that night, thinking the other could not possibly understand. But of course our friendship was strong and we realized the differences in the type of pain that we were experiencing.
Last night, we talked not about our different experiences, but rather a shared experience. We have both faced people that didn’t know what to say, said the wrong thing, or said nothing. We both faced alteration of what we had expected for our futures. We both endure constant reminders of that alteration. And we are both now in a place of wanting to share the lessons of our journeys with others. She spoke of mentoring other families who had received the same diagnosis as her daughter, and helping them navigate through their challenges. I write, in hopes that my words may have an impact on someone facing grief or watching someone they love face grief; and have become braver in talking out loud about sifting through life after loss.
Our experiences, which years ago had felt so incredibly far apart, now feel strikingly similar. We could talk about very different stories, but had the same reactions and emotions. We grimaced over each other’s most latest encounters of “people just don’t get it.” We talked of the tattoos we have that commemorate the unexpected forks in our paths. We shared a bottle of wine. And we both had more light in our eyes and we talked about the days ahead.