We caught up with the brilliant and insightful Larisa Bothma a few weeks ago and have shared our conversation below.
Larisa , thanks so much for taking the time to share your insights and lessons with us today. We’re particularly interested in hearing about how you became such a resilient person. Where do you get your resilience from?
In March 2023, our two year old son, Arend Agulhas, had a bone marrow transplant to cure a blood disorder he was born with. At only 4 months old, he was diagnosed with CGD and I was faced with navigating a diagnosis that meant that he was fatally allergic to most things in our environment as well as infectious people. His body was unable to fight bacterial and fungal infections and landed us in hospital was several life threatening infections.
I’m here to talk about resilience and the only way I see fit to explain it is that I was thrown into an awful situation, without anywhere to opt out, and every choice was bad. I had to pick which options were worst and constantly outweigh risks vs benefits. Positive outcomes seemed so far away that they barely helped us push through. The experience of putting our young child through chemotherapy and rip them of their immune system, only to introduce a new immune system which in his case was from an unrelated donor, was an extremely traumatic journey that I have yet to overcome.
After a postponed transplant in Sep ’22 due to Arend being infected with Covid19, we finally moved to Vancouver from Gabriola Island in February ’23. Our family lived at the Ronald Mcdonald house for 6 months during his treatment. Arend and I spent over 60 days in isolation, with frequent readmissions after our discharges. His transplant started to fail about three months in and he received a stem cell boost with the hope to salvage the donors cells. When we finally were able to come home at the end of August, we were barely ourselves anymore.
Being in transplant was like someone trying to knock me over just as I stood up. I spent much of it catching vomit, changing toxic diapers, soothing a child who does not understand why they feel so awful. I did not have a moment to catch my breath or dwell in the grief and discomfort; the whole time I had to stay on top of each infusion, treatment option, protocol, side effects and symptoms. I was constantly advocating. All the while, I had to remain a mum to our other child, our daughter Marita. She missed me so terribly and I had to show up for her, smile and tell her that we are ok and that all of this was temporary. As I waved through a double panel glass door, I choked back tears wanting to hold her little body.
Most days when people told me how resilient I was, I could barely accept it as a compliment. It was very challenging to feel strong throughout this journey and I felt like I was crumbling away, withering away and loosing my hope constantly. It’s true that I adjusted to all sorts of demands that were spinning around me, but I did not have another option. Giving up is simply not an option with your child.
My resilience was not a choice. It was a way to survive.
Let’s take a small detour – maybe you can share a bit about yourself before we dive back into some of the other questions we had for you?
Throughout my childhood, all I ever wanted to be is an artist. I have a deep love for art, nature and have structured an alternative lifestyle around this. Since I became a mother, I have focused on my art whenever I can find a moment. Over the last 5 years, I have started several brands.
Mothership Collective is a way to express the softer side of motherhood. This is my outlet for Fibre Arts. I make hand felted baby mobiles, ornaments and figurines. Since my medical journey began 2 years ago, I began needle punching anatomical art. I have a deep connection with fibre arts as I find it connects me to the natural world. It perhaps is an outdated form of art which is making a come-back.
As a true artist would do, I flip flop between mediums.
SCEND is a company I started at the height of Covid, just when I anticipated starting permanent employment and sending my daughter to daycare. As a parent, I learned to pivot and here I was in the height of a world pandemic, creating my own job where I could work from home. At SCEND, I sew bags and accessories from upcycled/salvaged sails. I source sails which would otherwise end up in landfill and am able to repurpose them into quality, practical items. Choosing areas of each sail is like building a unique puzzle, layering and attaching them to create something special.
I also run a company called KAZA, where I make kimchi and sauerkraut. This is a very local company and is sporadic as I only use seasonal, local produce. Thus, only producing twice a year on average.
In between these artistic endeavours, I am a graphic artist, and focus mostly on corporate and small business designs.
Falling in to the role of a medical parent, alongside my type-A personality, I have taken on the role to advocate for childhood illness. I have connected with dozens of other medical families, helped them to advocate for their child or simply been there to speak to them and be there in solidarity. This has probably become the most self-fulfilling role in my existence. It comes with so much pain and heartbreak but it has taught me to be a better human, to be more compassionate, generous, patient and supportive.
It’s hard to pinpoint what my brand is. Perhaps it changes as I move through seasons of my life. One thing I do understand about myself is that I need to continue to create art to feel fulfilled.
There is so much advice out there about all the different skills and qualities folks need to develop in order to succeed in today’s highly competitive environment and often it can feel overwhelming. So, if we had to break it down to just the three that matter most, which three skills or qualities would you focus on?
Above all, I believe it is so important to stick to your word. Being present when making a decision to do something, thinking it through and acting on it is how we grow. Loyalty to your decision and people that are involved creates easy relationships and satisfaction within your work.
I also believe that our communities are there to support one another. I have learned to be shameless in asking for support when it’s needed. There is an abundance of information out there, asking someone for help is a great way to figure out problems and in my experience often leads to meaningful connections. In a world which is so competitive, there is beauty in setting our ego aside to help others or ask for help.
I am a very hands on person. I appreciate what my hands and mind are able to do when I have an idea. Having a thorough knowledge of industrial design, art history and business has shaped me. I am keen to constantly learn, but don’t do well learning from books or by sitting in a classroom. I participate in workshops, engage in topics I know nothing about, and always challenge a decision.
How can folks who want to work with you connect?
I live parallel lives at the moment. I am an artist, I am a mother, and I am a medical mum. I am constantly faced with the challenge to find time to do everything I am passionate about. I love connecting with others and when opportunities arise to collaborate with someone else as passionate I feel joyful. I would love to create a bridge between being an artist and a medical mum; to find ways to support other families navigating medical trauma or to express my medical trauma through art so that people who have no idea what it’s like to have a medically complex child can find a way to connect.
People can contact me through any of my IG platforms:
instagram.com/scendsails
instagram.com/mother.ship
instagram.com/arendagulhas
Contact Info:
- Instagram: https://www.instagram.com/arendagulhas/
Image Credits
Stephanie Artuso
