By Janis Purdy
I remember touching his hands and feet. I remember his omphalocele looking bigger than his body. I remember his curved spine, his yellowish pallor and his old-soul eyes.
I remember his isolette, his PICC line, his NG tube, the IV in his head, his wound dressings twice a day. His daily dose of medications. His failure to thrive. I remember infections and green bile and TPN.
I remember a spontaneous bowel perforation. I remember emergency surgery. I remember praying desperately. As Anne Lamott writes, all my prayers were either “Help”, “Please” or “Thank you.”
I remember six long months in the NICU.
I remember two open heart surgeries, chylothorax, chest tubes, pain in his eyes, and a hernia surgery. I remember three months in the cardiac intensive care unit. I remember the NJ tube, low tone and the discharge plan.
I remember all the good, smart and kind people. I remember the sharp looks, the insensitive comments, the mistakes.
I remember leaving Sick Kids. I remember being so happy and so scared at the same time.
I remember emergencies and admissions and back and forth and in and out for a year. I remember feeds every three hours around the clock and dressing changes and meds that got stuck in his tube and I remember being very tired.
I remember his abdominal closure surgery. I remember a nurse in the surgery recovery room bringing him a brand new Thomas the Train toy.
I remember little friends who got better and some who didn’t.
I remember how much Jonny always loved his big brother. From the moment they met. And I remember his remarkable will to live and his incredible spirit of life and love.
I remember OT and PT and speech and language and oral aversion. I remember being completely humbled by Jonny’s strength and endurance.
I also have different memories that relate to today’s topic: Insights and Ideas for Creating an LGBTQ Positive Space at SickKids.
I remember growing up being taught that lesbian and gay people were dangerous to children. And that trans people were mentally ill. I remember a lesbian who lost custody of her children when she came out. I remember hiding and covering up and feeling ashamed.
I remember a nurse in the NICU asking if Diane and I were married. I remember that opened a door to a lovely conversation.
I remember a nurse practitioner in the NICU asking me, of my older son, “Does he call you mommy or mama?” It showed a wonderful level of insight.
I remember introducing our children’s biological Dads to the staff, and their grandparents, and their aunties and uncles of all genders and being amazed at how nice they all were in trying to understand and support our unconventional family.
I remember the receptionist calling Diane, Mr. Purdy once. She was so apologetic when she realized her mistake. Like red-faced and tripping over herself. I felt sorry for her. I began to call Diane Mr. Purdy after that as a joke.
I remember an older nurse sharing that she was gay too. That was nice and it helped us feel understood and comfortable. I appreciate that she shared that confidence in us.
I remember a younger nurse discussing the finer angles of lesbian motherhood with us.
I remember a GI doctor we’d never met before. We were not having a good day and he walked into our room without knocking, as they are want to do. “I’m Doctor X” he said looking between us. Then he asked, “Who is the mother?” I responded “We both are.” He seemed irritated. “Who is the BIOLOGICAL mother?” Instant tension. My partner tried to diffuse it with a joke “It sounds amazing but we both are!” He looked at her without smiling. “Who are you and why do you need that information?” I said. Sound of horns clacking. “There are many medical reasons we need to know who the biological mother is.” That was a bad start. Hard to get over a bad start.
I remember a social worker in the cardiac ICU asking us the kindest, most thoughtful questions about our family situation. She was concerned about whether we had enough support going home. Gender was not an issue.
I remember sometimes feeling angry at the world and dark and ready for a fight.
I also remember feeling so lucky and thinking, if anyone can handle this, we can. With our age, our experience, our families, our friends, our financial security, our good health… we’re going to be able to handle this. I remember thinking, Jonny chose the right family. And feeling so grateful.
I remember meeting moms and dads from all over Ontario, from little towns here and there and some who were very religious and some who had never met a lesbian before but it was all okay because here we were all surviving and hanging in there together. It was all about the kids and the diagnosis and the treatment and the prognosis.
I met people at SickKids, and made friends here, with people I’m not sure I would have crossed paths with in any other way. And that was good for me.
I remember a doctor here, someone I deeply respect, and will always love in a kind of hero-worship way, telling me that he thought Diane and I were great parents. I think I burst into tears, which would have been disconcerting for him, but that is how much I appreciated what he said.
When you grow up thinking you can’t or won’t be a parent, or you’re holding onto an ancient fear that other people will judge you, or dislike you before they’ve met you, or when you’re used to fighting and you’ve got your dukes up for no good reason, those little compliments and small indications of care, and empathy, well they can blow up your well-constructed walls and bring down all your defenses and really soothe your soul. Which is a really good thing for any parent of a sick child.