My Jelly: Alex Bonnesen

Alex Bonnesen gave birth to her first son, Oscar, in 2017. She spent that first year of motherhood experiencing the usual physical and emotional recalibration that usually accompany motherhood’s profound beginnings. But just after Oscar’s first birthday, the unthinkable happened—a sudden onset of enterovirus that would lead to an acute flaccid myelitis (AFM) diagnosis, a rare and polio-like condition that left him paralyzed. “From that moment forward, every fiber of who we were changed. Everything changed,” she recalls with heart-wrenching clarity.

What followed was a whirlwind of trauma, resilience, and unwavering love. With extraordinary determination, Alex and her husband navigated a cascade of treatments, adjustments, and countless challenges—all while welcoming their second son, Louie, who is now nearly two.

Her story is a powerful reminder of the resilience of motherhood and the strength of love.

The before: baby Oscar is born
Oscar was born at NYU Langone. My last checkup with my OB, GYN, I was four centimeters dilated a week before my due date. And Oscar was born on his due date. Quite honestly, it was an extremely intense but positive experience. We had a lot of support for my first few months postpartum. But nothing can prepare you for the physical, emotional, and metaphysical change. It was just such a transformation from recovery and healing and then trying to sort things out. The breastfeeding journey was actually quite smooth—a couple of expected hiccups with latch and blocked ducts. All those things that in the grand scheme of things are actually quite manageable. But at the time… It's like your body doesn't quite feel like your own, and it feels like this tool to provide. It starts to feel so emptying. It's like you're giving everything, so you're just kind of, like, but how am I filling up? There was so much joy and beauty, but also it was so depleting.

The after: trauma at 13 months old
With any trauma, there's a marker, right? There's the before and the after. Everything we’ve been talking about was “the before.” It happened very abruptly. Oscar was 13-months-old. He went to bed at night, and we woke up at one in the morning to his body not moving. A nightmare. He had a normal virus that any kid can get, maybe his nose was a little bit runny and this was at the time where he was teething. It all felt so minor. But then… it was immediate paralysis. I just picked him up and he was limp like a newborn baby. His whole body was not responding. Nothing prepares you for that total shock. And it’s like… you don't quite grasp the seriousness. I mean, you do know that it's urgent and that you need to call 911, but I had never experienced anything like it before. From that moment forward, every fiber of who we were changed. Everything changed. Everything is completely different. Those first few days, I was watching myself go through the motions, but I wasn’t even in my body. The most awful things that you can ever picture. We were rushed to some hospital in Brooklyn, but fairly quickly they realized they needed to transfer to one in the city to see a specialist that does spinal surgeries. And then I feel like I grasped the seriousness. I finally grasped the emergency part of it. He was in the MRI. They were calling an ambulance to escort us as soon as he was done so he could get emergency surgery to alleviate the pressure on his spine. At that point, we knew it was extremely serious, but also there’s this feeling of, okay once they do that… he’ll be okay, right? I just kept saying to the doctor, do you have kids? Would you do this? Would you do this if this was your child? I am in this crazy scenario and being asked to make huge decisions. It’s all so life changing, and you don't have the tools in your toolbox. You don't have the tools to know how to make medical decisions about a situation that you could have never dreamt up in your worst nightmare.

Oscar’s Village
What happened was a huge perspective shift on what you actually need in this life. Especially being in New York, with the hustle and energy. Suddenly we were in a total halt. Truly, all you need in life is family and health. Everything else is a bonus. Wrapped up in that is obviously the love factor and all that stuff, but everything else is just a bonus. This is really how we will survive. It felt so impossible to move forward and navigate our newness in the medical field: the coverage, the insurance, the specialists. Navigating all these things while you're carrying such a heavy emotional load, and still having to be functional and try to do your best work and ensure you’re on the right path to recovery. We delegated certain roles to family—it was a triaged situation. We called it Oscar’s Village. All so that his parents, us, could solely focus on him. And thankfully, he was our only child at the time. We poured everything into him. We delegated a couple top admin roles, and in covering meals and all these things—we didn’t have energy for anything that took focus away from hope and recovery.  

Once we got past the shock element, it was like, okay, what does life look like? I don't know. Now we're like nurses, so how do we gain those medical tools to then bring him home? And it was a slow road. We were in an inpatient ICU for a month, and then we were at an inpatient rehab facility for seven months and then home with 24/7 nursing support. It was all quite gradual, and it all needed to be for his fragility to get a bit stronger. It's a hard thing to describe.

Glimpses of Oscar
We ended up doing a tracheostomy surgery, a GT tube surgery, which was a big hurdle that finally removed a lot of tubes from his face. I think once we actually saw his face again, less hospital-like, it was such an amazing step. And he’s just a jokester! He does these little things, gives you a look, where you're like, are you joking me right now? It took a while to get there and for him to have the strength to even have that kind of interaction. And then hearing his voice and then the first time… he was kind of joking with us and of course he's like this cute little baby. Eventually he was working the nurses, and they were all coming to check on him often and I'm like, okay, we're back to how we know Oscar to be.

People say they admire me, which is sweet, but also, there is no choice—he's my child. This is what is required of me. There’s not an optional piece. I couldn’t hold him for a month. I didn't hold him for the entire time in the ICU. It was really hard having someone teach me how to hold my child. It was such an unnatural experience. Suddenly, something that should be natural to me isn’t natural anymore. That was a very hard transition. And then you just…I don't know. Kids are incredible. Oscar is so resilient, and so positive and joyful.

Moving forward… and to Canada
We ended up moving to Vancouver because it felt more accessible than New York. I try to advocate as best I can and learn about how I can make sure that Oscar’s daily living can be supported. School is important, making sure that school is accessible for him. He goes to a school that has an elevator. We just built a house. The house has an elevator. Everything's flushed to enter into the house too, so that there can be a bit more space for him to cruise around. I joined a children, youth and family advisory committee in our city. I went into it with the angle of accessibility of playgrounds and sidewalks, and just how we can best support people that have limited mobility. That's what my lead is for sure. There's many, many disabilities that need to be considered in the world, and I feel like there's so much change that needs to happen. It was such a second thought, but I think there's been a really positive movement in that regard. But yeah, it's still so far to go.

Expanding the family: a slow burn
The decision to expand our family was a long, slow burn. For a long time, Oscar required so much attention that a second was not even in the conversation. Before having any kids, we had the idea of wanting two or three kids, but then with this event that happened and the amount of energy and focus that was required, we really backburnered it. From a practical point of view, we didn’t get full nursing coverage until he was in school. Until then we only had a nurse come two days a week to help support us for some respite. And at the time my husband wasn't working, he was a full-time care provider. I was still modeling, because it just made more sense for us as a family. The process was very intentional, we waited to make sure we had coverage and for Nick to get a job, and then I got pregnant.

A tender transition
Once I got pregnant, I had anxiety about having anxiety. Does that make sense? I remember talking to my therapist and saying, I’m just worried generally. From what we went through, that worry is innate in me even though I am a generally hopeful person. Despite everything that happened, I still see so much beauty in the world, and that pillar for me has not shifted. With the second pregnancy, that anxiety didn’t show up in the way that I thought it was going to, which I'm really grateful for. And then, when Louie was born, Oscar was so tender and welcoming. It was quite a sweet transition, and it's been such a privilege to watch it blossom and see Oscar figure out ways that he plays with his little brother. I wish I had eight arms, but also if I did, they'd all be occupied. It's a wild ride for sure. And it's constant, constantly surprising me and constantly expanding my capacity for love and language to try to put language to certain things too. 

He’s different, and that's okay
There was a big lead up to starting school. I had a friend who gave me really great advice that was essentially just taking ownership of opening the door to communication, especially with parents. People are generally good-hearted and sometimes they don’t want to say the wrong thing and need a bit of guidance. We tackled it ourselves and did a little one page printout about Oscar that sort of said, these are the things he likes. This is what works for him. This is what doesn't work for him. He had a virus that manifested in his spine, he can't move his body. We just wanted to get the questions on the table so that people didn't have to whisper or wonder. We don’t need to sugarcoat it—he’s different from a lot of the kids in the class, and that's okay. There’s a lot of navigating the balance of facilitating protection, but also allowing Oscar to advocate for himself. 

Life is life, and life goes on
We just got past the anniversary of that date, and I never thought that we would feel so gentle about it six years later. This is just what life is now. He was one when it happened, and now he's seven. He doesn't remember life before—for him, life is life. Something I’ve certainly come to experience is that the grief and things that come with this experience are only my own. He didn't have any experience outside of what his life is. It's a continual learning evolution of things and reframing of my own expectations, and he's such a guide in that regard. He’s so matter of fact in how he experiences the world now. He’ll be like, I can't do that because my legs don't move. I'm like, right, okay. And I'm always anticipating things to shift—for his experience and conversations of inclusion and questions and anger to come. I'm still waiting and it's not coming. I'm not sure it will and maybe it won't. 

Words: Anna Deutsch