Encounters with Sustenance: Nora's 13th birthday and Halloween

Friday, October 30 marked 13 years since Nora was born. After a long 10 hour sprint for work Thursday to try to catch up from being off, I put on my autoresponder again for the day of her birth to be able to fully focus that day on our memories of Nora and time with Jason and the girls. I'm so grateful looking back on the day that it included a hike up to Hensley's Pond. I needed that time then and need it as I look back on that anniversary day! Our first stop along the way, was a persimmon tree that was starting to drop ripe fruit. Since our trees are bare this year, this was a special treat!

When we returned from the hike, it was a tight hour or so of preparing our family to get out the door and in the elements for the next 7 hours or so. We had decided some weeks back to give an "in the time of COVID" memorial blood drive a try. While I had been questioning the wisdom of that choice in recent days, I was ready to make the best of it and was prepared that it would be different in so many ways from the previous ones - no homemade snacks, no kids, masked/distanced visiting only, no hugs... It was especially hard to not be there as a whole family (but we knew the kids would much prefer cousin/aunt time down the road to sitting outside in the cold by the parking lot for hours - and they did!!).

I'm still trying to process many of my mixed and messy feelings about the drive. So let's start with the "easy stuff" to share. In the end we had 38 donors come to give. 9 of those that came were "deferred" which means that they were like me and turned down for some reason - in my case I was one tenth too low on my iron! And then 2 had unsuccessful donations, one of those being Kali as they missed her vein and didn't get it even after some uncomfortable digging around. So 27 pints of blood donated via the drive and so I'm told by the Red Cross that it was a "good drive" or a "success." I very much hope all that was donated makes its way to bodies that need it and are helped along in their healing journeys by it!

And I feel really grateful for our friends who joined, for the friends of our friends (whose daughter Norah died) who joined, and the other persons that didn't know either of our families but were just looking for a place to give. I was especially heartened by the first time donors who had come and were clearly facing some fears in order to give. I was glad for these human and real points of connection. Are you waiting for the "But...?" If so, you are right that it is coming! And it is not just about the fact that by the end of us sitting outside for many hours, it was pretty cold! That would have been easy to bear on its own!

I think, for the purposes of this space, I'm going to just share the analogy that came to mind the morning after the drive as my thoughts and emotions were still tumbling around. I was partly a little surprised and perplexed by the intensity of my anger at the end of the drive. The sadness and tears was less surprising as I sat reading our blog book compilation of writings about Nora's birth and life and our grief journey following her death. But it was the mixing of that, with some intense frustration about the drive that had me doing a bit more stewing.

Here's what came to me: Working with the Red Cross to host a blood drive is to our NICU experience like working with Virginia Blood Services to host a blood drive was to our PICU/palliative care experience. In other words VERY different! I was noting earlier in the day how often Nora's birthday is a more painful season for me even then the time around her death. While that has always seemed strange in many ways, it also makes a lot of sense in other ways. The weeks that Nora was in the NICU were so full of confusion, difficulty connecting with caregivers, trying to bond and care for a baby that nurses sometimes called their baby, separation from Kali, feeling out of control and like we weren't fully integrated into Nora's life and care, etc... After 6+ months of loving and living with Nora, we arrived back at UVA and got connected to palliative care. We were seen as "the experts" on Nora, were fully included in her care, were allowed to form relationships and partnerships with her caregivers, were listened to and relied upon, etc... When it was clear that she would not live, we were given the freedom to have family and friends come to say goodbye and to rearrange the hospital room into a sacred space for saying goodbye and were allowed to fudge on normal protocols--if and when reason suggested such--to fit our needs and Nora's. The end result was the same and excruciatingly sad, but the process made so much difference to Nora at the time and to us as we grieved her death.

At the blood drive the other night, I realized that if I find value in giving some of my time and energy to organizing blood drives, I can still feel free to do that in the future. But I need to extricate that from Nora's birthday and her death anniversary. These blood drives started as a meaningful way to remember Nora together and to invite others into that process and ritual of remembrance (while doing something valuable together in the process) - and the staff at Virginia Blood Services became meaningful parts of those rituals of remembrance and even found ways to make them extra special. We still want to donate blood together. And it sounds meaningful to invite friends and family to join us in that. But hosting a Red Cross blood drive puts me right into the mix of a massive bureaucratic structure with what seems like miles of red tape that seems to strip it down to an extractive industry mostly caring about # of pints and not much about the humans giving those pints. On Friday, it was just too much for me...

Let me end on a cheerier note about last evening! The girls were dreaming of finding a fun way to celebrate Halloween at Tangly Woods, and it was indeed a fun time complete with apple bobbing, eating homemade donuts off strings and the adults hiding for the kids to find and get treats from us! We had a fairy, a bunny and a flamingo searching for us. Tala won being the most difficult and the last person the kids found!