Our family is on an amazing adventure! What we thought would be a wild ride raising a typical little boy turned into a experience in patience, learning, understanding, and humor, navigating the world with a medically complex child and his amazing sidekick, Juna.
Our life before Jackson was just like any other. I mean, don’t all couples meet while living together in a 21′ Sprinter van and putting on mud runs across the country?
So our story starts out a little different than most, but after meeting, spending almost two years on the road, and finally settling down outside of Houston, Texas, Zach and I married in 2015 and got ready to welcome our first baby, a boy, the next year. We were ready for the adventure that was parenthood, but nothing prepared us for the wild ride we were about to take.
Almost 33 weeks into our pregnancy, our baby boy, Jackson, was diagnosed with a congenital heart defect and growth restriction, setting us up for an early delivery and what, we thought, would be a short stay in the NICU. One wild delivery, two hospital systems, and three failed intubation attempts later, Jackson was diagnosed with a slew of birth complications no one was expecting and we never saw coming. We would spend the next six and a half months in Texas Children’s Hospital, undergoing multiple surgeries, hundreds of procedures, and more close calls than any child should have to endure. He would finally be diagnosed with a rare syndrome – Coffin Siris Syndrome – and a genetic mutation that led to making him truly one of a kind.
Our time spent in the hospital was only the start of our adventure. The real fun began on April 6, 2017 when we were finally able to bring Jackson home to his best friend – our rescue dog, Juna – who had been anxiously awaiting his arrival. These two are now on the adventure of a lifetime, navigating the world of home, hosptial, and everywhere in between, with wit, sarcasm, and a great sense of humor.
As if our lives weren’t enough fun already, our newest adventure – a baby sister for Jackson – arrived April 2018. And to think, it all started in a Sprinter Van.