A few weeks ago I was asked to interview for a local newspaper. The piece was focussed around International Women’s Day #IWD2016. It was an honour to be asked. It was a difficult interview to do. The author was limited to a 650+ word count and I wasn’t sure how she would tell ‘my story’ in that space. I think Bhavana (Gopinath) did a good job of condensing our 2 hour conversation. She describes me as a mother, advocate, and athlete. I think those three nouns describe me well. Here is what I might add to the article:
Julie is in an incredible amount of pain and lives most days moment to moment. She can’t seem to process the tragic loss of Kate. She feels the shadow of her little girl with her at every turn. Every morning she opens Kate’s bedroom door and says ‘hello’. Every night she closes it again and blows her a kiss ‘goodnight’. Kate is there when Julie sleeps, and she is the first thing she thinks of when she wakes.
Julie finds peace and empowerment in supporting other parents to navigate and survive the complexity and frustration of a medical system, and community care that are not structured to support medically complex and fragile children like Kate. She wants to be a voice for change, and as she gets stronger she will continue to seek out the right opportunities to do that. Opportunities that are real, and where people within the system are dedicated to real change.
Julie doesn’t want Kate’s death to be simply accepted. She would like to see learning happen, and the opportunity for growth of knowledge and skill in assessing, managing, and treating medically complex children. She knows Kate’s death comes with a heavy lesson, and that one day there will be a better treatment for SIFD and mitochondrial disease, possibly even a cure.
Julie runs because that is where she feels strong – and where she also feels pain. Her sweat conceals her tears. The burning in her lungs and in her legs reminds her of what Kate had to endure and her strength. She listens to music that inspired her all along Kate’s journey. Her running partners remind her of the people who have rallied around her family, and that she is not alone. Running in solitude gives her peace and the opportunity to live a few of the lessons Kate taught her – strength, endurance, living her best life.
On May 28th, 6 weeks after I run the 120th edition of the Boston Marathon , I will run the 42.2 kilometres of the Ottawa Marathon as part of Team MitoCanada.
This is one of my steps in building Kate’s legacy.
Team MitoCanada Ottawa will run in honour of Kate this year. Our trademark “Team MITO” shirts will be pink, Kate’s favourite colour. Over 100+ runners will participate in the 2k, 5k, 10k, half-marathon and marathon events to raise awareness and money for mitochondrial disease. All money raised at #runOttawa2016 will be presented on behalf of MitoCanada to the Children’s Hospital of Eastern Ontario (CHEO) Research Institute as they pursue research into SIFD and mitochondrial disease.
If you would like to participate as a runner, and help us fundraise toward our goal of $42,200, we would love to have you.
To donate to Team MitoCanada Ottawa Race Weekend, please visit my #runOttawa2016 fundraising page.