I Was There Too is a series of conversations I am having with other medical moms and photographers who are telling stories of life for families with medical complexities.
Meet Rachel Martens.
Here’s a little intro in Rachel’s own words, “I’ve been married to my wonderful spouse Nick for 17 years. I’m mom to a young man by the name of Luke who passed away in August. He was medically complex, born with a very rare chromosome disorder called Mosaic Trisomy 22. Caring for him sent me in a lot of new directions like part-time researcher into his condition, policy advocate to facilitate a more inclusive world for him and research partner to ensure that nobody has to repeat some of the aspects of my family’s story. I work as a Research Engagement Strategist and connect with families across Canada and other parts of the globe to discuss the nuances of parenting a disabled child.”
I originally met Rachel in the online medical parent world, but we connected in real life at the Children’s Healthcare Canada conference last year. I never had the opportunity to meet her son, Luke, though I was honoured to be asked to photograph his celebration of life. Rachel wrote, “Luke passed away a week and a half shy of his 14th birthday. After a rather traumatic experience with his passing, I didn’t want his birthday to be marked with pain but rather with joy. He valued connection with others, time together and also ice cream. We decided to host a small, socially distant afternoon with friends to help remember him and just to be together.”
Rachel went on to explain that the decision to have a photographer there for the Luke’s Celebration was not an easy one. She wrote, “I found myself looking for excuses. Then I reminded myself that memories will fade, and I never wanted to let go of remembering a day where people came to put some good back into the universe and remind the world that he mattered.”
And what a day it was!
Watch our conversation to learn more about Rachel’s experience as a medical mom and you will quickly see just why she is such a strong voice for children and their families. This woman is a powerhouse.
The following are a few excerpts from our conversation that stuck out for me. They are time stamped for your convenience in case you want to skip ahead to a particular topic of conversation.
Lived Experience at Club Med
2:55 “I’m a Research Engagement Strategist with CanChild Centre for Childhood Disability Research. What does that exactly mean? I get to talk to families and researchers about the fact that their lived experience actually means a lot in the science of helping disabled children.”
4:00 “This job led me to meet so many people who have walked a very similar path to my family. Also to bring the very distinct nuanced realities that we live. It’s helped to create more understanding with the professionals. The hospital is our second home. We call it vacationing at Club Med.”
Focus on the Positive
7:30 “There is strength that comes from the idea of being really honest about your experiences. When you can be vulnerable in the sense of laying things out there and not apologizing for it.”
9:25 Rachel and I spend a little time talking about Katie Jameson’s amazing Instagram post about how to reframe a diagnosis. Scroll through the images below to see her post and then go follow her on Instagram.
Grief is Unique
15:10 There is so much weight from the impactful trauma that our families experience. I always try to do something good to put back in the world.
20:15 We chat about an amazing picture book, The Rabbit Listened by Cori Doerrfeld and the song I Lived by One Republic.
21:50 “One of the lines that stuck with me from I Lived is “With every broken bone I swear I lived.” I can’t think of a better life philosophy. Crap happens. We have been through some terrible things. But at the same time we emerged all the more awesome. We lived well.”
Advocate Like a Medical Mama
Right at the end of out time together, Rachel and I chat about different way families can get involved with advocacy. Here are a few of the options we chatted about…
CanChild Family Engagement in Research
Children’s Healthcare Canada
Rare Families Alberta
Rare Families Canada
Rachel blows my mind. She is so open and honest about her life and her grief. I have learned so much from her and I’m looking forward to seeing what’s next for her because, honestly, whatever she does will be good for medical families.
Rachel, you are extraordinary!
You can find Rachel on Facebook @CoffeeandAdvocacy or on Twitter @RaeofSunshine79