Mission
To honor Declan's life by turning our family's hardest experiences into stories, tools, and advocacy that protect vulnerable children and the support people who love them.
About
Welcome. I am a former finance leader whose career shifted when my son Declan’s complex medical needs required full-time care and advocacy.
I write about medical caregiving, ethical decision-making, and grief. My writing draws from my experience navigating complex systems, advocacy, and loss. My work explores what happens when the systems meant to protect vulnerable children fail, and the impossible choices families are left to make in response.
Declan was born with Moebius Syndrome, an extremely rare neurological condition that causes paralysis of the facial muscles due to underdeveloped or missing cranial nerves, specifically nerves VI and VII. Along with facial paralysis, Moebius often causes low muscle tone throughout the body, which can affect every bodily system. Declan was on the severe end of the spectrum and could not eat or breathe on his own.
Throughout Declan’s life, we navigated constant uphill battles: Medicaid and disability waivers, insurance denials, nursing shortages, and the complex systems responsible for his care. We encountered both extraordinary compassion and profound failure. We fought for Declan.
During this time, a failure in the system meant to protect him led to a criminal case that exposed gaps in Minnesota law. I later advocated for legislative change, contributing to the passage of Minnesota Statute 609.3775.
Declan’s life was full of adrenaline-filled, almost cinematic near-death experiences. It was also filled with love.
Declan deserves to be remembered. Not just for what he endured, but for the impact he left behind. This world is a better place because he was in it. And I’ll keep speaking for kids like him. He would want me to.
Selected Publications:
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Grief Without God - The Humanist
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Pediatric Home Healthcare Oversight: Why Accountability is Failing - KevinMD
Vision
A world where vulnerable children are safe, seen, and cherished. Where families are heard and supported, and where the systems meant to support them - hospitals, home care, schools, and courts - respond with courage, accountability, and compassion.
From a fellow parent in this community, Bailee Schultz:
My name is Bailee, and I am the mother of a micro preemie who decided to come into the world at just 24 weeks.
I was lucky enough to be near a Level IV NICU when I experienced complications during pregnancy. But just because it is the highest level of neonatal care doesn’t mean it came without its ups and downs. I had to learn fast in a world I knew nothing about medically, figuring out how to advocate for my tiny 1 lb 7 oz baby as a first-time mother.
My greatest advice to anyone caring for a medically complex child is this: remember, you are MOM (or DAD). You know your child on a level that no provider ever can. If something feels off, say something. Ask the questions. Ask them again. Get a second or even third opinion. Do not stop until your gut feels settled.
There have been multiple instances where I was told my daughter did not have a certain condition or diagnosis. Yet during imaging done for something completely unrelated, a “ruled out” diagnosis would suddenly appear. It was heartbreaking and overwhelming. But it was also the moment I began to understand that the medical world is not black and white.
My next advice is to find your village. I know how daunting this can feel. And often, it won’t be the people already closest to you. What I have learned is that there is power in numbers. Knowing you are not alone gave me the strength to keep standing up for my daughter. There truly is a group for everything—even something as simple as a Facebook group. Whether you’re looking for education, shared experiences, or just a place to release what you’re carrying, please find these spaces so you don’t suffer in silence.
Nobody asks to be part of the medically complex world, and it is even harder when it is your child. I hope this site leads you toward hope, or at the very least opens doors to resources and the right questions to ask your providers. We live in a hard world. Coming together makes it easier.