After a decade and a half wiled as a SAHM/caregiver/catechist/volunteer, more professional endeavors have fallen into my calendar of late. Though I'm still all those other things too.
I was asked to give a talk at the annual PAS conference as the mother of a medically complex child. It was a pediatric seminar on ethics and supporting families through the big decisions that come with these complex cases. The conference was originally supposed to take place in Vancouver, which would have been so amazing, but giving the virtual live talk from the comfort of my dining room was a bit less intimidating. O Canada, I'll see you one day.
It was an emotional experience, reliving some of Ben's early days and reflecting on the sorrows and joys of this complex beautiful life. The combined traumatic and miraculous experiences of all those "gathered" together to share creates an air of wonder and heaviness that is difficult to express.
Added to that, Ben's cholesteatoma has returned. He had a CT yesterday to determine the extent, but he's likely soon to be undergoing a series of procedures to empty his more troubled ear of all functional parts and to surgically close it permanently. The hope is that he'll eventually be able to achieve hearing through a cochlear device. It's disheartening to be facing these unknowns just as he's headed off to college. But the hope of good hearing and fewer infections is something worth enduring for.
In my talk, which happened to fall upon the birthday of Padre Pio, I touched on the challenges of this life and the lives of several of my friends in similar situations. But I also talked about all the ways these complicated experiences challenge the world to be better.
One example, is the book my friend Ann co-wrote with one of her late son's doctors. It's called, Shared Struggles. They compiled stories from parents like me and medical professionals then gave a parent and professional commentary on the situation to help bridge communication and understanding in this unique relationship. My copy arrived the night before I gave my talk. I first read the chapter I'd submitted, so touched that Ben's story is spreading in new and positive ways. I look forward to devouring the rest of the book, especially the ones I know personally. I need to set aside the crying time though! If you know any medical professionals or anyone with a medically complex family member or friend, they need this book. It's available from Amazon or direct from the publisher at Springer.
When Ben was a baby, needing 24/7 specialized care, his nursing agency could not cover our shifts and we'd take turns going days without sleep to keep him alive. We were at our breaking point and our jobs were suffering. Our friend, Justin, with no medical experience saw our distress and offered to take over a night to let us sleep. He promised to knock on our door if any alarms sounded or if he was worried. He repeated this offer and eventually progressed to handling feeds, meds, and addressing alarms himself. He and his wife eventually became our most trusted respite caregivers. This experience led Justin to go back to school to become a neonatologist. His personal experience of intense caregiving influences his care of countless medically fragile babies today. One little trach did that.
I began a new part time job at the start of the month. I'm a Resident Advocate for Birthstone Corporation in training to become a certified life coach. I'll be helping select the residents for our program and walking along with these moms coaching them as they achieve their goals of self-sufficiency. It's a dream job in so many ways. Years back when Jason and I were attempting to adopt a baby, again and again we felt like it was the mother we should adopt, so she could perhaps become stable and independent and be able to keep her baby. In a way, that's the goal now, facilitating the environment for families to thrive.
It's a busy time of transitions and growth, but so edifying to be finding new purpose. I feel led and renew my surrender.
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