Instead of reading this long-ass-ness you can also listen as I cry, laugh (I’m so sorry for the volume), and speak with my hot young widow pal Nora as I share my story on the ultimate podcast for the grieving: Terrible, Thanks for Asking.

Dem Episodes

Kari (Part 1): Aaron | Terrible, Thanks for Asking

Kari (Part 2): Sloan | Terrible, Thanks for Asking

Hi, I’m Kari.

I started an Instagram account – @sloan_strength_ – as a way to advocate for Sloan after her birth, share our experience, and connect with families who also have children with disabilities. Little did I know that this account would grow, connect me with the most fabulous people, all while our life would continue to transform in really difficult ways. I also had zero clue what I would learn along the way, too – resulting in me changing my IG account handle and website name from @sloan_strength_ to @kariandsloan and/or Still the same old Kari and Sloan, though!

So – because of how our life has changed the last couple years – I decided to take it all public. Why? Because my mom always said “there’s healing in advocacy” – so I guess you could say I’m (selfishly) working on healing these giant, exposed, open wounds.

The timeline goes like this…My daughter, Sloan, was born in a very traumatic and unexpected fashion in April 2019. In September 2019 my mom died. October of 2019 Sloan was diagnosed with CHARGE syndrome. Then, in June of 2020, my husband died, too.

April 2019: Sloan is born. Meteorite-style.

Before I dive into the details – let me be clear: the human Sloan is NOT a wound on anything, ever. She’s the reason my heart has kept beating. She has kept me going, and given me a purpose to face the next day: even if it’s the worst day of my life.

With that said – our experience with pregnancy, birth, and life has presented me, Sloan, and my family with a long list of medical trauma and lifelong hurtles to face. There is a form of grief that presents itself in these hurtles and challenges.

We were thrilled to have Sloan join our family – Aaron, Grandma Kim, and I (Kari) had been preparing a “baby box” of little items for when we someday decided to have a kid. We found out we were pregnant in August of 2018 after 9 years of marriage, lots of prep and planning, and what we thought was the ultimate readiness for parent life.

Other than horrific all-day sickness with weekly IV drips to keep me hydrated, it was going as planned. We (Aaron, Kari, Grandpa Paul, and Grandma Kim) attended Sloan’s 20-week ultrasound, excited to find out more about Sloan. That’s when the news came: we quickly found out Sloan was different. There were a few genetic anomalies on her ultrasound, including cleft lip and club feet. Over time – plus weekly detailed monitoring and ultrasounds – Sloan was looking so strong that doctors thought she might have hit the two most common genetic anomalies. They felt there was a low chance for an underlying, syndromic type of diagnosis – and we continued forward with a ‘typically’ planned birth.

Sloan was born in April of 2019 and she came in the most wild, emergent, unexpected way. Her body was slowly giving up and so was mine. Ultimately, after 28 hours in labor, my doctor decided to do an emergency c-section. The moment Sloan was born, it became very clear she couldn’t breathe. The labor and delivery team swiftly took her into another room to attempt intubation. Aaron (Sloan’s dad) watched with bated breath as the intubation was unsuccessful four times, and on the fifth – it worked.

Once Sloan was stable enough for transport, the team at our local hospital decided to send her on life flight to Primary Children’s Hospital in SLC. After two very intense, traumatic months in the NICU – combined with a long list of diagnoses presented after Sloan’s birth – we took Sloan home with a trach, gtube, long list of medical supplies, in-home therapies, and a planner full of future appointments.

Sloan has now had more helicopter rides than most babies I know. She’s a wild child. Six months after her birth, she received a clinical diagnosis of CHARGE syndrome. While she doesn’t have the genetic marker of CHARGE, some kids are diagnosed with CHARGE without the genetic marker. Experts think there are additional genetic markers for CHARGE that we haven’t found quite yet. So – because of Sloan’s DeafBlindness and eye structure – she received a clinical diagnosis. We are proud to be a part of the CHARGE family.

May 31st, 2019: Sloan’s homecoming day.
September 2019: My BFF + mom + grandma goals unexpectedly dies.

Just a few months after Sloan’s big (and traumatic) entrance into this world, my mom (grandma and human goals) passed away unexpectedly. My mom meant the world to all of us – me (Kari), Sloan, Kassie, my dad Paul, and Aaron.

My mom was a beacon of light in our local community. She was an avid learner, community service advocate, event organizer, and all-around awesome human. I am so lucky to call her my mom, she truly was the best friend and mom someone could have. Her death was extremely hard on all of us, always will be, and we face the reality of grieving and missing her daily.

A few days prior to my mom’s passing, Sloan was in the PICU fighting for her life with RSV. Aaron and I also came down with a cold and had to stay home for two days to keep Sloan and the other kids safe. So, instead of Aaron and I being with Sloan, my mom and dad sat with her as doctors monitored her vitals and kept her alive. Sloan smiled, played, and entertained her grandma and grandpa those two days in the PICU.

Once I was feeling better and ready to go back to the PICU, I took my parents to lunch to thank them for being with Sloan. I cried, hugged my mom, and told her she was the best mom and grandma in the entire world. She hugged me back and said she wouldn’t want her grandma experience any other way. She said she had the best two days with Sloan since her birth and loved being with Sloan alone in the hospital, spending quality time with her precious granddaughter.

This was the last time I ever saw my mom. The last experience I had with her. And I’ll always cherish that and hold it close to my heart.

July, 2019: Sloan with her Grandma Kim and Grandpa Paul.
June 2020: My BFF + husband + partner in crime of 13 years unexpectedly dies.

Then – just when we thought the worst was behind us – my personal trauma and grief hit an all-time high. My best friend, husband of thirteen years, and Sloan’s dedicated dad passed away unexpectedly after experiencing a sudden decline in his mental state. This struggle quickly escalated after he sought treatment and faced severe side effects from prescription meds and an incorrect diagnosis. (Reminder: suicide doesn’t always stem from depression.) After lots of phone sleuthing I now know that in his final days, he was hallucinating and hearing voices of people from his past that he feared becoming. In all fairness to Aaron, it reached a point he needed to be admitted. But he knew me well enough that he knew how to keep these episodes hidden from me. This experience terrified Aaron’s “right mind” so much, that he feared those same experiences could harm me and Sloan in the long run.

He couldn’t see a way out, wasn’t in a clear frame of mind, feared mine and Sloan’s future, and ultimately died by suicide. Some say it’s a selfish act, but in the most twisted, dark, morbid way…Aaron thought he was saving us. And he didn’t care how that reflected on him in the future.

So one could argue, in his mentally ill and illogical state, it was the ultimate selfless act. I know that’s hard to digest – and can initially make little to no sense – but trust me when I say I am the expert on Aaron, and I can confidently say – after time and understanding the bigger picture – I know exactly why this happened and what he feared in the future.

I definitely still want to pinch and freak out at him some days – I have endless “Shit, Aaron.” moments. And I know, in his right mind, he’d be saying it with me. He’d want to pinch himself and freak out, too.

Aaron was everything to me, Sloan, and my family. Aaron and I were the best of friends – inseparable – for thirteen years. We loved to take long drives with a cup of coffee and debate politics, philosophy, and religion. We loved to talk Harry Potter, play Halo, and watch The Office on repeat like every other unoriginal couple out there. Aaron consumed information in unbelievable ways – he had a mind unlike anyone else I’ve ever met. He was brilliant. And quirky. A great combo.

Aaron was also a stellar dad to Sloan. He attended every appointment. He knew the science behind everything, kept the doctors on their toes, and made sure Sloan had her ortho boots on every morning. He snuggled her, danced with her, and loved her more than he ever thought loving someone was possible.

He also had the most obnoxious sneeze to ever exist, and I gave up being polite about his sneezes years ago. Sloan has inherited those sneezes now…Thanks Aaron.

We were truly an old couple in our thirties – and while we had marital moments just like everyone else, I loved him with my whole heart. I will always cherish how much he loved and respected me in return.

We grew up together, grew closer every day, and I lost an enormous piece of my heart the day he died.

I was sure, without a doubt, I would die of heartbreak too. And – while it looks like I won’t die anytime soon – I will absolutely never be the same.

So – there’s Aaron. His death doesn’t define him. His life does.

August 2018: Kari and Aaron
So…Why do I share? What’s the goal?

I talk openly about suicide, mental health, and the realities of grief. Because – just like with any other death – assholes die by suicide and kind people die by suicide. Suicide stems from the complexities of life and mental illness. If someone hasn’t ever experienced a mental episode, break, or illness – I can see why it’s impossible to understand. But to categorize it as always a selfish act is just too simple and creates a world where suicide continues to kill, because people feel they can’t share their struggles without judgment. Aaron was working extremely hard (with my full support), using proven methods and science, to overcome what ultimately killed him. But it just simply wasn’t enough in the end.

There’s another reason I talk openly and realistically about mental illness and the hard stuff. As a teenager, I attempted suicide my junior year. Just like Aaron, I was hallucinating and terrified. Once my mental break was established, my parents took me out of school for the rest of the year. They cancelled all of my obligations, scheduled intensive therapy and psychiatric evaluations, and allowed me space to just be and get healthier. I’ve been in therapy ever since.

So, I know. This is all a lot. But I hope through sharing I’ve made one thing clear: we don’t ever know the battles others are facing, or have faced, in their life. With a world that intensely reinforces Instagram-perfect photos, witty Facebook captions, keeping up with the Joneses, and endless toxic positivity: there are less and less safe spaces for realism and vulnerability. Especially when that realism is dark, scary, and difficult to face.

All-in-all I never thought I would survive what 2019 and 2020 brought my way. But I’m still here. And we’re doin’ it – not without grief, pain, hardship, and realism though. The connections I’ve developed online are my favorite thing. It’s provided space for advocacy. I will always talk both good and hard things.

You won’t find #toxicpositivity here – I will never tell anyone to slap on a face mask and get over it, or everything happens for a reason. I’ll sit and cry with you, rage with you, struggle with you, and support your advocacy too.

I hope this site becomes a resource for those who need understanding, realness, resources, and empathy in their darkest life moments too. Also, lots of me and Sloan updates to foster inclusion, join the fight as an ally in creating a more accessible world for people with disabilities, and ultimately spread Sloan’s big energy, life, and joy.

I truly believe in humanity and the right for all of us to have a loving, real, judgment-free, empathetic human experience. Especially when shit hits the fan.

I got you. Even when life sucks the most.

August 2018: The whole fam-damnily. Kassie, Paul, Kim, Aaron, and Kari.