I met Lesley briefly at Blissdom 2013 - I apologized for getting between her and someone taking her picture at the outside party and she hollered at me to get in the picture with her. Afterwards, we became Twitter friends and I started reading her blog, Real Women Drive Stick (so according to Lesley I'm a fake woman, but it's okay, I'm coping). When I learned some of the details of her son's birth, I was sort of struck by the strangeness of the fact that people can endure the most cataclysmic of events and walk around without the effects permanently stamped on their faces.
Lesley is an emergency nurse and special-needs parent, and Blissdom completely lit an author fire under her, leading her to reduce her nursing hours and write and self-publish a book about her son Torran, who was a micro-preemie, born at just 26 weeks and 6 days gestation, due to oligohydramnios, a lack of amniotic fluid. Lesley and her husband Bruce were asked on more than one occasion if they wished to withdraw life support for their son.
I've known two or three people who had babies born prematurely, even extremely prematurely, but I only met them when the children were safely out of the woods, and none of these children's conditions were as grave as Torran's. Lesley's account felt incredibly raw and real and much of it was hard to read - I can't imagine how hard it must have been to live. The number of life-threatening conditions and taxing medical interventions would be heartwrenching if a full-grown adult was involved; imagining it happening to a two-pound baby, tiny and unimaginably thin-skinned and fragile, who should rightfully still be safely tucked in his mother's womb, is horrifying. The tubes he needs to breathe and eat wear away the skin of his face. At one point a doctor says that he needs new sutures in his head, but worries that the tissue is too macerated to even hold them.
Much of Lesley's account feels almost shockingly intimate - confessions of guilt and hopelessness, the inevitable toll taken on her relationship with her husband, and feelings of resentment directed at the rest of the world, particularly people taking home healthy babies. At times when she holds Torran and his oxygen levels drop, it feels like her love is doing actual harm to him. There are also flashes of spiky humour, revolving around the physical indignities of breast-pumping and baby poop, and moments of rare beauty, such as the first time she gets to hold her son, swaddled and then skin to skin, and (this one made me tear up) the moment when she gives a mother's day card to the nurse who has been as ardent an advocate and caregiver for her son as his own parents. I also love her letter at the end of the book, addressed to other preemie parents, with love, empathy and permission to rage and grieve and hope.
Growing a Rainbow is available through the website Growing a Rainbow, and a portion of the proceeds will support the Canadian Premature Babies Foundation.
Torran came home five months after his birth, and is now a monster-hunting six-year-old who likes roller coasters and Mike Wazowski (I heartily approve). He is not without his challenges.
Some time between my first Blissdom and my second, I read Lesley's story Line of Sacrifice. I thought it was an amazing rendering of a mother's selfless love for a child. I feel like I know more now about why Lesley understands that so well.