“Perspective is a function of experience. Kids can feel like their worlds are ending because their worlds are smaller than ours…So, what we can do, is let them feel. Give them permission to feel. And more importantly, be super brave, and let them see us feel. Let them watch us navigate our feelings in awkward, kind and brave ways.”– Brené Brown from her podcast Comparative Suffering, the 50/50 Myth, and Settling the Ball
The impact this one person has had on the way I think about being a mom, being an educator and being a leader is astounding. Over the last few years, I’ve read most of her books and when her Dare to Lead work along book came out I was totally on board. A few of my girlfriends and I dubbed ourselves the “Brené Buddies” and together we would meet once a month, generally with wine, and lean in to tough conversations about work life and family life.
And now Brené is back in my life with her new podcast, Unlocking Us.
I remember hearing about this podcast a few months ago and getting nerdy excited about it. I had just started listening to podcasts and was beginning to understand why people loved them so much. By pure coincidence, Unlocking Us debuted right after covid-19 hit. Listening to Brené talk about her own experience with how the world has changed, as well as interview people like David Kessler on the idea of grief and finding meaning, were really powerful for me this week.
This is what I need right now. Every single episode of Unlocking Us has left me with a clearer understanding of what I am feeling right now. It’s left me scrambling to write down quotes and wanting to share with friends and fellow medical moms.
I find so much of what Brené talks about resonates with me…from comparative grief to fear, shame to vulnerability, shitty first drafts to F-ing first times. I think these ideas resonate with me particularly strongly because of our medical story and the photography I do for other families. I truly believe when we practice empathy we create more.
One of the reasons I photograph medical, special needs and palliative families is because caregivers need to see themselves in their family’s story. I am now photographing the Front Steps Project for very similar reasons. Unexpected things happen. That’s life. And as Brené said in her first episode “This is our F-ing first time in a global pandemic”. The first time we do anything is hard. But talking about it (or writing or photographing) might just give us some clarity about how to move forward.
Recently, there has been a fair bit of controversy regarding the Front Steps Project and whether it is appropriate for photographers to be documenting families at this time. I would argue that it IS important. The following stories are from families I have photographed for this project. Each of these families chose to write about how the current crisis has affected their families and their mental health. Each of these women share stories from their lives, their fears and anxieties, as well as some of the things they are grateful for. I would argue that this project helps us to feel connected to our community. It helps us to see our family, friends, and neighbours and recognize our collective strength and resilience. But, perhaps more importantly, it helps us to see ourselves.
“We feel like one one of the fortunate families in Canmore as we are both still working. However, I worry about my company making it through this pandemic as I work in the tourism industry and we really depend on the summer.
Like everyone else, I am really struggling with doing anything well at this point in time. I feel overwhelmed with trying to manage everything. Honestly, I feel like I am failing at work, parenting and home schooling. If I could just focus on one thing then I would be fine, but trying to work at home is challenging. My girls actually love school and I am very much a people person, so in general I just miss human interaction! I am so sick of everything online including a 2 hour zoom call where I plunk my kids in front of the tv so I can be on the call with no interruptions.”
“Covid-19 has me worried about the future and our ability to access the resources my medical child needs; therapists, aides, pediatricians, cardiologists… Within days our team and structure fell apart. It has been hard on all of us. I felt off kilter, like I did during Ella’s regression phase. [Ella has Rett Syndrome.]
It has been very hard on Ella. She doesn’t understand exactly why she can’t see her friends, attend school and go swimming. We are taking it day by day. There are days I fall apart for a few minutes. And that’s ok, it’s better than ignoring your feelings in this crazy time. There can be many times in the day Ella expresses her frustration by screaming. She can’t speak and her speech device saying “feel angry” or “feel upset” doesn’t seem to be enough.
But I feel GRATEFUL that we are learning to access help for her virtually now. This morning she listened to a story by her education assistant on a video and kept waving at the screen. Soon we will Zoom with her home aide and occupational therapist to plan fun activities.
We are adapting. We are getting some structures back. My children are so RESILIENT during these uncertain times. And so, we will play in the sun. We will laugh. We will welcome Dad home from work with hugs and be happy he’s got a job. Ella will chase after her brother and life will feel normal. I will feel happy that we are alive and healthy and in a safe and loving home. We will choose JOY when times are tough, but acknowledge our sadness too. We have our awesome community to help us too.”
“This was challenging to write so it took me longer than I thought. I guess this is what trauma is…so much gets buried so that you can survive.
Our son, Jack, was diagnosed with Acute Lymphoblastic Leukemia in 2015 when he was 11 years old. After 3 1/2 years of treatment, we celebrated his end of treatment on December 3, 2018. We have spent the past year re-establishing our ‘new normal’ as a family with a teenage childhood cancer survivor.
In many ways, we feel fortunate because living in isolation is not a new experience for us. A cancer patient has an extremely compromised immune system, so we were already used to staying away from and managing anything that could have been harmful to our son. But I do feel sadness – I feel like so much of Jack’s childhood will be summed up by the word ‘isolation’. I see the disappointment in his face as he has learned of the cancellations of so many things that were important to him. He doesn’t have many years left before adulthood and I am sad that once again, we feel like life is being put on hold.
I have a lot of feelings of anxiety – I am often brought back to the time of early diagnosis and how helpless and alone we all felt. I really wanted to leave those feelings in the past, but just entering the grocery store causes my heart rate to increase and I can hardly manage to stay focussed enough to get what we need and get out. I also have anxiety about the followup care that Jack receives – we have been comforted by blood work results every few months, but now that has stopped and follow up care is provided through a phone conversation. What happens if Jack relapses – will we recognize the symptoms and get him the help that he needs? It is absolutely terrifying.
Fortunately, I do also have feelings of gratitude – the teenage years are challenging, this experience has once again brought us closer as a family. We spend a lot of good quality time together and it’s nice to know that your teenager wants to be with you. Each and everyday, we try to count our many blessings. It’s so much easier to face the day when you celebrate your blessings instead of thinking of what you don’t have.”
So yes…I think The Front Steps Project IS important, perhaps even necessary.
I am careful. I am aware of the current situation. And I have my own family to protect. But people still need connection and love and hope. People need to be seen. Photography is how I can be of service.
I truly believe when we practice empathy we create more. I want my kids to see me navigating my feelings in awkward, kind and brave ways. But I also have to remember to be kind to myself, because this is also my F-ing first time in a pandemic.
If this blog resonated with you, you may also want to read Why Medical Families? or watch My Visual Resume on YouTube