Creating And Living An Enviable Life:
A guidebook supporting individuals with medical complexities
By Jim and Aidan Jordan
WELCOME
The Goal and purpose of this book is "helping individuals with medical complexities and their families live fuller, happier thus enviable lives.
Inspired by Aidan Jordan's extraordinary life, this guidebook shares practical strategies, personal experiences, and encouragement for families, caregivers, and professionals navigating complex medical needs. Not just in a hospital, but holistically in schools, community, programs, and home.
This book is dedicated to the parents, grandparents, brothers and sisters, aunts and uncles, long-term care providers, and all the professionals who give undivided love and care to the often “invisibles” in our society who deserve the best possible lives.
My amazing son Aidan was born with a genetic mutation, Trisomy 9 mosaicism, which meant some of his cells had an extra 9th chromosome. That disorder introduced myself and my wife Joan to a new world of medical complexities. Over the years, I often found myself sitting in. St. Louis Children’s Hospital sharing Facebook updates on one of my son’s many fights to stay alive.
Sometimes, I used humor to cope and to offer hope to both our family and our “club'’ of Trisomy parents who often face immense fear and anxiety while our children suffer intolerable pain and tubes and needles and the often harsh realities of hospital life. Though Aidan passed away in 2024, I never forgot the response to one of my posts in the late 1990’s from a fellow Trisomy parent. “Jim, you need to write a book with all your posts to share with our group and others.”
The loved ones we call the dead
depart from us and for a while
are absent. And then as if
called back by our love, they come
near us again. They enter our dreams.
We feel they have been near us
when we have not thought of them.
They are simply here, simply waiting
while we are distracted among
our obligations. At last
it comes to us: They live now
in the permanent world.
We are the absent ones.
Wendell Berry
"The Loved Ones"
Hopes and Goals
Supporting a loved one with medical complexities can be an intimidating and overwhelming undertaking. You often feel isolated and alone, but by tailoring your approach to fit your family's needs, you can create a happy, maximized health, admirable and enviable life. Medical complexities are challenging and exactly what they sound like, complex. It often takes the whole medical team to implement a successful treatment plan. Hospitalizations can be frequent and long. A goal is to provide suggested approaches, tools, and motivation to help you successfully maneuver the myriad of challenges you face day in and out. Stand strong as a family and accept help from the community so you can live the life you and your loved ones want to be living!
Aidan changed the narrative. Aidan was a pure, loving soul who touched the life of EVERY single person who ever had the pleasure of coming in contact with him, and that is a lot of people! He was a gift to this world and certainly made it a better place. It only took a few minutes in his presence to be reminded what matters most in this world—to laugh and love unconditionally. I hope that Aidan becomes a guiding star for the way your families share love and adventures.
One last objective is the hope that professionals change the way they approach their work and are guided by individuals like Aidan and his parents.