Ode to Connor: 10 Years On
20 April, 2023
Today marks 10 years since Connor physically left us. 10 years-sigh. It feels like 10 minutes and 1000 years and everything in between. In many ways part of me died along with Connor that fateful day and in many, many profound ways my life took on its greatest meaning with Connor fiercely alive inside of me. I promised Connor, while holding his hand as he took his last breathes on this earth, that I would celebrate and honour him every single day for the rest of my life. That has been the easiest promise I have ever made.
So many thoughts and mixed emotions swirl around. I debated sharing them. But alas, it feels a day worth recognising, commemorating, reflecting. On a road I wish I wasn’t on has taken me on my life’s biggest journey. A road I will continue to travel on for the remainder of my days.
How do I feel ten years on? What have I learned? What do I know now that I didn’t know-or didn’t acknowledge knowing- then?
I jotted down the first 10 years of “Truths” that come to mind-in this order:
And the greatest of these IS Love. My love for Connor is exactly the same as the moment I first held him in my arms. There is no waning of love. My love for Connor is infinitely greater than the depths of despair from his death. I miss him, of course-I miss the joy of him, the fun of him, the life of him. Missing is unrelenting but of course that’s part of love.
The passage of time has not lessened my love. I have no fear about forgetting or losing the feeling of this love.
It is the same, a constant and a constant companion. Connor gave me a lifetime of “I love yous” but as I always replied back to him “Love you more”. And I always will.
Being a Mother has trumped everything else in my life. I was lucky to be Connor’s mom for his nearly 19 years of life. He was and will also be my first born son. I am a Mother to three children. Two are very much alive and thriving on this Earth. Connor is still my son although physically not here -his energy and presence is all around me. Motherhood strips you bare, crushes your soul, takes all of your time and energy but miraculously holds you in place, gives life purpose and meaning. The lessons from Connor (and Nick and Hannah) continue to shape me, guide me. Weeks before Connor passed, he looked down at me from his 6’3” frame as we walked arm in arm after helping him to toilet and said “You are an extraordinarily good Mother”. I’m glad he thought so, being his mom, a mom was (is) my life’s greatest gift.
Connor was a gentle, kind soul. I remember his time in the hospital post his surgery- those many long, difficult weeks. Connor was always thanking the people that looked after him: the doctors, nurses, therapists. They were doing their best and he was grateful. I think of this so often. We wanted someone, anyone to ‘fix’ Connor. Unfortunately, for Connor there was no ‘fixing’. We are all mere mortals (except Connor of course and his band of brain cancer angels). He seemed to understand that. Our family has been the recipient of kindness in spades. I never underestimate the power of kindness. Especially when people feel vulnerable and going through a difficult time. I have been held up by so many-they might not even realise. If I can pass that on, even a little, I feel Connor thanking me from above
The coming together of people to ‘do good’: to work together, to run (walk!) together, to believe together is a powerful world to belong in. I feel part of several wonderful communities: Connor’s friends, Connor’s Run, the brain cancer researchers, the brain cancer families. Together IS better. Joining ‘forces’ in a positive way yields extraordinary results. I come from Beaver Dam, a small town in Wisconsin. My aunt tells people “don’t forget where you came from”. I’d never forget my hometown. Although having been away nearly 40 years. I still carry the joy of coming from a place where people know your name, know your story and hold you up when you need it most. It’s a privilege every day to be part of the community that has grown since Connor passed.
Grief is a personal journey-that ebbs and flows and for some never ending. I hope to show empathy but also respect for how others choose to grieve. Early on I said I was a ‘productive griever’. I felt better channelling the energy from Connor’s loss into something that helped him live on, a legacy for his life. That has worked for me but I have learned this isn’t for everyone.
I am in awe of the energy and single minded purpose Connor has given me. He has inspired so much good. I don’t quite understand the energy and how it hasn’t lessened in 10 years but I’m leaning into it. To feel inspired is motivating and life changing. We are all looking for heroes: people we can respect, learn from. How lucky am I that my life’s greatest inspiration is my son? I’m not sure about our destiny and if its predetermined but I often wonder if this was the inevitable story for Connor and me. I feel absolute contentment that I’m doing exactly what I should be doing. I’m now equally inspired by the dozens and dozens of other young people affected by brain cancer that are now part of my world. Their stories affect me and my sense of resolve.
Celebrating Connor’s courage and ‘awesomeness’ brings me joy. Much of our Foundation has been created around Connor: the run he did once, while hating running, his love of Latin giving us Aeternum Fortis, his favourite colour, yellow matched with September’s Children’s Cancer Awareness month, his obsession with games, books and riddles part of our GoGreyinMay, creating our Music therapy program around the joy music was for him. Celebrating his life and bringing joy to others in the process has helped me enormously. When he was being treated for brain cancer everything was bleak and stressful. Connor would say ‘let’s just have fun’. Couldn’t agree more.
Every morning I wake up I reflect on the day ahead. Consciously or unconsciously I begin what I have done every single day since Connor passed-3650 days -making a commitment to do what I can to help change the odds for other young people with brain cancer. Planning events, working with our Legacy families, learning where we can make the most/best research impact, building the incredible team to help achieve our Mission, liaising with our Board. Every day brings a host of jobs to be done. I haven’t wavered in my commitment. What I’m doing 10 years on feels like a natural progression from how we began. This routine and sameness of every day sense of purpose has been part of my post Connor survival.
Connor now ‘famously’ proclaimed “I WILL be Awesome”. We celebrate his awesomeness in all we do and are. I very much feel Connor’s ‘awesome’ presence. He visits me in flickering lights. This has happened repeatedly over the last years. A candle, a light-gently (or more aggressively) flickering-reminding me he is gone, but not really. He is literally all around. His physical body and personality was always bigger than life. He was born at nearly 10 pounds and never seemed to stop growing. His personality equally large-challenging me to think differently, parent differently. It seems fitting his spirit is equally large. I once commented that I felt Connor’s spirit greater than my parents and grandparents. Hannah suggested that when a young person dies they have more energy, are younger so their spirit is bigger, brighter. Makes sense to me.
We are nothing without Hope. Living in a world of world of hope, knowing that we can make things better, is a world I want to be part of. Connor has inspired so much good but also Hope. Ten years on we have helped provide better testing that has changed the treatment in 40% of children diagnosed, we are funding more, better, faster Clinical Trials, we are funding immunotherapy and soon an exciting Australian first research project using novel technology. We have funded more research, more researchers and created opportunities for careers in pediatric brain cancer. We have brought joy through our Music Therapy program and brought thousands together with our ‘morefunthanrun’ Connor’s Runa and Connor’s Erg. We didn’t do this alone-you, our supporters and our sponsors & partners and most importantly our brain cancer community have come together. We have held each other up while holding us together and given each other the best gift of all, HOPE.
Ode to Connor: On this day and every day Connor may your spirit keep shining as brightly as the beautiful sun today. May you continue to inspire me, guide me and allow me to channel my passion and purpose into creating a better future for young people with brain cancer. My love for you will never wane and forever and always you’ll be one of my life’s three greatest joys-being your mom.