Every Heart | Every Hand

In June of 2006, the course of my life changed, sending me in directions I never could have imagined or dreamed of.

At the time, I was a postdoctoral research fellow studying cell and molecular biology. Five years prior, I had received my PhD in a field called pharmacogenetics - its a big word that boils down to understanding how our genes change how medicines work. I was looking for my first real job that would let me use my pharmacogenetics and cell and molecular biology training to launch my own research lab. If you are not a scientist like me, this might sound ambitious or even a bit pie in the sky, but in my field, it was the normal course of action -grad school, postdoc, start your own lab. Little did I know, my career path was going to shape up to be nothing close to normal!

My wife was about 3 months pregnant with our second child and was having some scary complications. We were sent to a specialist and after some testing were heard words that we were not at all prepared for -

“there is something wrong with your baby. we can’t say what one without more tests, but your baby has a genetic disorder. the most common are…”

This is about all I really remember hearing. There were words about terminal illnesses, risks to mom, potential impacts to family, options for termination, but I wasn’t listening anymore. I was devastated, and so was my wife. What did we do to deserve this? What did we do to cause this? ‍What the hell are we going to do about this? We left the appointment with a stack of brochures (that I never read), and a crushing weight of despair sitting on our chests, making it hard to breath.

We had no idea that this would be the beginning of a life of advocacy for inclusion of people with all abilities and we definitely had no idea that this advocacy would lead us to Lazy Goat Winery!

In December of 2006, our son Elijah was born with trisomy 21, more commonly known as Down Syndrome. He had a host of medical problems that affected his breathing and eating. He had his first major surgery lasting nearly 8 hours, within 20 minutes of being born, and it was the first of so many surgeries we lost count. His first year of life was littered with long hospital stays, ambulance rides, and more terrifying near death experiences than I care to recount. Our home was filled with medical equipment, we were physically and mentally exhausted, and we were struggling to keep Elijah safe and provide the care he needed, without completely ignoring or marginalizing Elijah’s big sister Grace. We were holding on to our careers by a thread, leaning into our friends, family, and church to be there for Grace when we couldn’t. I am certain we would not have survived without the support system that wrapped around our family and carried us through that first year, and several more after that.

As heart-warming as that may feel, we started recognizing right away that Elijah was born into a world that would not treat him fairly. I had resigned from my job to take care of Elijah, and my wife returned to work to provide sustainance for our family. And that unfairness started almost immediately, having to fight to access the doctors and services he needed to be healthy - and always the first question at any appointment, '“will mom be joining us, we are going to need some information, paperwork filled, out, etc”. Then it was access to public spaces - men’s rooms with changing tables (let alone changing tables that could accommodate all the equipment we had to tote along to have Elijah in public, the people who would stop us to get a peek at our new little angel, and promptly offer their apologies and condolences to us when they realized he had Down syndrome…and not once did they offer to carry one of the several bags slung over my shoulder carrying feeding pumps, apnea monitors, oxygen concentrators, and all the rest we hauled to the grocery store, to church, or anywhere else we went with Elijah…as I struggled to balance them and not drop the awkward carrier that Elijah was nestled in or to lose the grip on the hand of my sweet little Grace. Those were the times I felt the most alone, even though we were surrounded by crowds of people.

The specific experiences change over time, but they never cease - whether it was IEPs for Elijah, pressure put on Grace to be a mentor for the schools LINK programs…because she is already so good with students that have special needs…, questions about my wife’s age, or questions about the commitments that any of us can make '“because of…well you know…your family circumstances”.

All of our experiences, have not been negative, in fact, despite the negative experiences, our families journey has been very rewarding - not without its scars - but very rewarding. I only share the negative times to help everyone better understand where we come from, and what sits at the heart of our effort to open Lazy Goat Winery.

So you may be wondering how we got from all the despair above to this idea for a winery with a mission of social impact and inclusion. If you are, please sign up at the top of this page to be notified when new blog posts are released!

Thanks for reading, I hope you will continue to follow our journey to convert a small family farm into an opportunity for individuals of all abilities to have meaningful employment, build relationships, and learn important life skills. Every Heart, Every Hand, all the time!