Table of Contents
This book is dedicated to my children.
To John Jr., who has my life;
Megan, who has my soul;
and Patrick, who has my heart.
And to their mother and my wife, Aileen,
who shares my life, heart, and soul
in every way imaginable.
Many people over the years have asked us how we first met and when and where our first date was. John always jumps to answer ahead of me, and takes great pride in telling people that she asked me out. As if he were some prized object of desire by the girls at my high school, the all-girls Academy of the Holy Angels, which was a few towns over from Oradell, New Jersey, where John attended the all-boys Bergen Catholic High School. I quickly remind people that while it is true that I did the asking, Johnwho was known to study quite a bit back thenremarkably had no social plans that weekend. We finished as high school sweethearts and married two months after I graduated college in 1990. Life has been pretty normal ever since. not.
Through the long journey of our now more than twenty-five years together as a couple, we have learned much from many people in our lives. And we have learned a great deal from each other as we have grown together.
I was sixteen when John and I went on that first date to the Holy Angels winter formal. In February 2008, I was preparing to turn forty years olda long way past high school and the ever more distant memories of that winter dance. We believe that life should be celebrated whenever possible, and there is no better way to celebrate than with family and close friends. So my daughter Megan and I came up with the idea of a Cinderella-like ball, complete with ball gowns for the ladies and tuxedos for the gentlemen. Much of the night was a spoof, like my rhinestone tiara with the gaudy 40 dangling from the crown. It was a way to celebrate a unique spirit of family.
The party was an unspoken milestone not for me, but for our two youngest kids, Megan and Patrick. Diagnosed in 1998 with a rare form of muscular dystrophy known as Pompe disease, they werent supposed to see their mom turn thirty, let alone forty. But the party wasnt melodramatic; it wasnt nostalgic. It was just plain old fun. And it was filled with laughter and love.
This book is filled with that same laughter and love, told through many stories and vignettes. Some will make you cry. Many more will make you laugh out loud. This book is not meant solely for parents of special needs children or families struggling through health issues. The stories and lessons that John presents here are lessons for us all. Perhaps even more than any of our contributions to Pompe disease research, it is these learnings in lifefrom our failures as much as our successesthat will be an enduring legacy for the Crowley family.
For years, John has spoken in public about our familys unique journey to find a treatment for Megan and Patricks disease, and much has been written about that effort, including a wonderful book by Pulitzer Prize-winning journalist Geeta Anand called The Cure (which was the inspiration for the feature film Extraordinary Measures, starring Brendan Fraser, Harrison Ford, and Keri Russell). My husband has a special gift of eloquence to articulate thoughts, feelings, and perspectives. Johns speeches, however, do not focus on the events between the kids diagnosis and the eventual life-saving enzyme replacement therapy that he helped to develop. Instead, they reflect on the lessons in life that we as a family have learned throughout this journey. They represent the fabric of who we are. And that is what this book is all about, building on the many inspirational talks that John has given over the past few years. This book is our familys attempt, as told through Johns writing, to share much of what we have learned. What follows is not an accounting of events so much as a showing of ideas, ideas about how to live life.
There are many people who have influenced us through the years, and many of the lessons from those people are told here. It is from our three children that we have learned the most, however, without their ever knowing that they have been teaching us along the way. John Jr., Megan, and Patrick have taught us more about life and love than we have ever taught them. Each of our childrens paths has been different, each marked by their own personalities, strengths, frailties, and dreams. They each have special needs, but they also have special gifts. We are thankful for each new day and we believe we have much to share. This book is one way of sharing our lives.
Aileen Crowley,
December 2009
I was just shy of eight years old when my dad died. In his obituary, the Englewood Chief of Police said that everyone loved my dad and that he was a cops cop and a Marines Marine. I remember his sense of humor and I remember him looking exactly like I look today. His dark Irish genes continue on.
I was born April 7, 1967, in Englewood, New Jersey. My mom and dad had known each other for all of a year or so. Some friend had arranged for them to meet, and their first date was at a bar in Englewood called OPrandys. They hit it off famously.
My mother, Barbara, still likes to tell the story of the first time she took my dad home to meet her very Italian parents, Frank and Jeanette Valentino. My dad was excited because he loved Italian food. But my mother wasnt quite sure how her parents would react to an Irish cop. Theyd never had an Irish guy over to the house before, so instead of spaghetti with her legendary sausage sauce and wine, my grandmother served corned beef and cabbage and steak and potatoes, and actually had a six-pack of beer ready for him. My mom says he was never so disappointed.
We lived in a little apartment in Tryon Gardens in Englewood, half a mile or so from St. Cecelias Church. I always remember it as this great big apartment complex, but when I go back today to reminisce, I see that its only a couple of modest courtyards surrounded by all these little garden apartments. But it was an incredibly warm, loving place to spend my childhood because Tryon Gardens was basically a Crowley and Valentino family compound. Think frontier settlement for Irish Catholic cops and Italian carpenters.
My mothers father, Grandpa Frank, was the superintendent, so he and my grandmother lived there for free and received a little stipend each month for maintaining the property and the apartments. My dads brother, Jim, also a cop in town, lived there with his wife, my Aunt Marie and their two kids, Jimmy and Laura, as did my mothers sister, my Aunt Michele, and my dads only sister, Aunt Cappi, with her kids.
So growing up, it was kind of neat to have all my cousins running around. We would only have to look out the window to wave to each other every day. My grandfather took care of a couple of other apartment buildings to make ends meet, including the ones that replaced the Palisades Amusement Park in Fort Lee. When I was little, he would take me on his maintenance calls all day long while my mom and dad worked. I wore my baseball cap, and he built me a little tool-box. He put a couple of small tools in there, but hed always put a book or two and some snacks in there as well. Over the years, hed put in fewer tools and more books. Id want to do the carpentry with him, and he did teach me how to hammer nails and fix a few basic household items. But he saw that I wasnt all that good at carpentry and, more important, he didnt want me to work with my hands for a living.