Life with Sara + Thor


 2018-07-14
Sara and Thor Jensen are superheroes in their personal and professional lives and we wanted to understand just how they navigate life as people who not only live type 1 diabetes 24/7 as parents to Henry but also as core members of the Beyond Type 1 team since founding in 2015. It seems the answer is—together.
They are busy! THOR: building + maintaining our websites and handling any tech crisis and SARA: creating everything from our logo to every single creative asset we use on our websites, across our platforms, in our presentations and partnerships, and yes, that is her handwriting … meaning she hand writes every single one of our Instagrams and a lot of other things too. Despite all this, they took the time to answer (separately) our questions. We’re feeling inspired by these two who have given so much to the type 1 community—and know you will be too. Enjoy!

What is the most challenging thing about being a type 1 parent?
SARA: The hardest thing about being a type 1 parent for a long time was forgetting that I was also a person who needed care, and that my husband needed my attention as well. It’s easy to get caught up in the hysteria of a new diagnosis and let that fear consume you. It’s harder to accept that you are doing everything you can to keep your child well and to remember everything else.
THOR: The lack of sleep. I know it’s selfish to say in a world where my kid gets needles in his body every day but the thing that has the most immediate effect on me in the aggregate is waking up several times a night. We thankfully switch off every night so it’s not too intense but it can really add up.
What is the most challenging thing about parenting a type 1 + working in type 1?
SARA: I think about this a lot. Sometimes I feel a lot of pressure when I wake up to Type 1, I work to design for Type 1, I get alerts about type 1 from my son, I’m reaching out to people who seem scared and lonely in their diagnosis and trying to help them. Sometimes when I need help I have a horrible habit of comparing myself to others that to me, have it even harder and I feel that I have no place to complain or ask for help.
THOR: I don’t know what this means! I’m pretty insulated from the human side of the foundation, living as I do in a perfect world of pure mathematics. I think that parenting Henry and having him grow into his role as an ambassador for the disease while balancing his normal kid life is a unique challenge.
Has working in Type 1 diabetes changed how you approach parenting/managing a child with type 1?
SARA: It’s a relief to see many of my co-workers who have type 1 thriving, that Nick (Jonas), works so hard and takes such good care of himself. That Carter Clark (person with type 1 diabetes (T1D) since the age of 4) can climb the sides of mountains in some distant South American country and be okay. I know that Henry will be okay. That he can do what he wants to do, that he knows to really live the way he wants to, he just needs to take care of himself a little differently.
THOR: It’s great to be exposed to families who are handling the same issues in their own ways. It’s a constant learning process, and there’s always some new trick to pick up.
What does it feel like to see your work being embraced by millions of people around the world? Literally, millions.
SARA: I’ve always been really bashful about sharing my work with my name on it. I’ve always been a bit of a ghost designer. Honestly though? When I see the billboard in the Helmsley building or see the tears in people’s eyes when they watch a video with my son in it—that is everything.
THOR: It feels bad! I hate it! What kind of question is this? It’s great obviously. The fact that I’m doing work that can make a direct positive effect on people’s lives is deeply satisfying.
How do you balance family life with type 1 diabetes parenting and type 1 diabetes work?
SARA: With the help I hate asking for. We have a system. This applies in all areas of our family life. If Thor does the laundry, I fold the clothes, the kids put them away. If I cook dinner, the kids set the table and clear and Thor cleans up. If Thor cooks dinner, I make him clean up because he is a wild mess when he cooks (hahaha). If I check Henry’s blood glucose (BG) at midnight, Thor will check or dose at 3. Just like working for Beyond Type 1, I am nothing without a team.
THOR: We don’t typically do anything different parenting Henry—type 1 diabetes parenting is just parenting with more numbers. It’s important that he knows there are no limits to his life, so we parent him just like we do our daughter Rose. I’m pretty good at compartmentalizing so it’s easy to avoid burnout.
As someone who is intimately involved with Beyond Type 1, what do you use Beyond Type 1 for in your personal life?
SARA: I use the app to connect people with each other. I look on our website because even though we have lived with type 1 for five years there are so many things I still don’t know. The amount of (great) content we have is staggering.
THOR: Uh I … I don’t? Very much?* I check in on the app and the site every few months but I’m a mechanic, not a race car driver, so most of my time is spent under the hood making sure the machine keeps running.
*Clearly, Thor is missing out!
You are working with your spouse and parenting a type 1, raising your glorious daughter Rose, adopting animals left and right—how do you keep the magic alive?
SARA: Oh god. Is this like the Newlywed game? Scared to give the wrong answer.  It can be hard when you are tired from a stretch of highs or lows. We do try to go on dates sometimes even though it’s hard to find a caregiver we trust (so excited for Safe Sittings!!!). Honestly, at the end of the day, Thor and I both have such weird senses of humor and such a love for our family, we can’t imagine being anywhere else but here.
THOR: There’s no such thing as magic, just misdirection and persuasion. Sara and I are the people for each other.
You live and work on a magical island off the coast of Seattle with a population of 2162, that includes a camel and a zebra. What is the coolest thing about living and working there?
SARA: Community. Interesting how work is life and life is work for me. The ferries are pretty cool too.
THOR: The community—everybody knows everybody else and tries to get along except for a few weirdos. Now I just have to not be one of the weirdos.

Want more Thor and Sara? Try these amazing articles: Up All Night by Thor or  I Can’t Sleep by Sara.

WRITTEN BY Sarah Lucas, POSTED 07/14/18, UPDATED 10/27/22

Sarah’s daughter Mary was diagnosed with type 1 in 1998 at the tender age of 7, igniting a passion for education, advocacy and supporting research for a cure. It was this passion, and a desire to help people live well today, that led her to co-found Beyond Type 1 in 2015 with Juliet de Baubigny, Nick Jonas and Sam Talbot. Prior to founding Beyond Type 1, Sarah was a celebrated event designer, writer and lifestyle expert and the creative force behind two Bay Area event + production firms. A passionate and life-long philanthropist, she has raised over $15 million for Bay Area charities and served on the board of several California and national organizations focused on youth, health and education. When she's not fighting to make the world a better place, you will find her hanging out with her awesome family, practicing yoga and exploring the world—frequently on her bicycle.