It’s now two days since Temma’s “big birthday bash”. It was a wonder! Close to sixty-five friends, neighbors, and family came out to celebrate Temma’s forty years of life, and many others who wanted to be there but could not make it. I have a little more time to reflect now than I did in the weeks leading up to her party. I am so grateful for Temma’s life and all of the communal relationships that have sustained us. Temma would not have lived to this birthday–and perhaps neither Tim nor I nor our marriage–without this network of relationships enabling us to “keep on swimming.”** Thank you to each and every one of you.

**Thanks to Ellen’s stylistic planning we had an underwater sea life theme in our family’s party wear. The theme carried over in the decorations on the tables, and in the frosting creations atop the most enchanting cupcakes by my friend, Katie Debus (Sweet Dundee). When some asked why the appearance of fish, turtles, seaweed, octopus, and other underwater life? I answered, “Because we are weird and mysterious like these creatures; we often feel as though we’re underwater; and our mantra is, ‘Just Keep On Swimming'”.

Late September–around this anniversary of Temma’s birth– has sometimes been a difficult time of year for me. I have written before about my grief and post-traumatic stress over the circumstances of Temma’s birth and near-death. I’ve continued to work with and write about the shame that is a part of me. Shame that was with me before Temma’s life and shame that overwhelmed me by my inability to give her a life without profound disabilities. The celebration of Temma’s forty years helped to make this year’s September a new experience. Thank you. You helped us resist the rendering of her life and the lives of so many others, disposable and meaningless. It’s requiring all of the strength we can muster to just keep on swimming.

One of the few Substack newsletters I subscribe to, is Death and Birds by Chloe Hope. deathandbirds@substack.com In this morning’s edition, titled “Unburdened: forces tender and terrible”, she writes:

Capitalism views grief as inefficiency, and so it is given timelines and medication. Pressure to return to “normal” interrupts (or stunts entirely) a process which, allowed to unfold naturally, can fundamentally deepen our experience of being alive. It can attune us to the perfect and inherent vulnerability of every one and every thing, and reveal to us to the simple and miraculous nature of inhabiting a vessel capable of love. These things make urgent our practice of compassion, and laughable our categories of “us” and “them”; thus rendering the well-grieved quite the threat to the status-quo. When we commit to feeling deeply we become conduits for something far larger, and in grieving we might practice what it looks like to love without limit or condition—even when that love leads us into the fire….Our dead [I would add, “our beloveds living with profound disabilities] can bless us with the opportunity to discover what it is that we are capable of holding; from the herculean weight of a world mid-collapse, to the everyday sublimity of the winged [the finned, tentacled, webbed, and shelled].

There were so many simple and miraculous signs of love at Temma’s Big, Birthday Bash. These are a few of my favorites: the embrace of a current neighbor and of a friend from many years ago; the shrieks of joy and the big, beautiful smile of Haydn from her wheelchair at the center of the dance circle; the wonderful songs, especially “Why Do We Hunger For Beauty?” by Jim Croegaert and “Be My Riverside” by Tim Lowly; so many great handmade cards and beautiful messages; the arrival of my sister, my two brothers, and their spouses; spontaneous exclamations of delight at the presence of such dear friends from so many eras of our life; Temma’s own beauty, wonder, and wakefulness throughout the entire event. I come out on this side of Temma’s birthday “undrowned”,*** not alone, and freshly enabled to just keep on swimming.

***My friend Lois, alerted me to the book “Undrowned: Black Feminist Lessons from Marine Mammals” by Alexis Pauline Gumbs