Chasing Miracles: The Crowley Family Journey of Strength, Hope, and Joy

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CHASING MIRACLES

Newmarket Press

Chapter One

My baby girl was three years old. She had her hair in pigtails. She was sitting on the edge of her bed. This was back when she had enough strength to sit up on the edge of the bed. At the time, I was really struggling with "trust" in my business. Trusting the science. Trusting the financing. Trusting the system. Trusting in myself.

I was sitting on the floor next to the bed and reading Megan her Princess book, and I said, "Megan, you've got to be careful, sweetie. You're too close to the edge, and I don't want you to fall. But if you do fall, you know that Daddy will catch you."

Megan just looked down at me. Without saying a word, she smiled, closed her eyes, stretched out her arms, and allowed herself to fall forward.

I caught her and held on. Then I asked her why in the world she would do such a thing. With little muscle control and a body whose every system was already deeply compromised by the ravages of her disease, a headfirst fall like that on a hardwood floor could have been disastrous. And then I saw that she was laughing, looking me right in the eyes. She knew exactly what she had done. She had fallen on purpose and dared me to catch her.

She knew that I would. I said I'd catch her, and I did. Ever since, I've always wondered why she did that. Was it to experience the thrill of free fall? Or maybe to show me in her own special way that she trusted me completely, without a moment of reservation?

Late at night, July 2009. Princeton, New Jersey.

Aileen and I are lying in bed and we get on the subject of falling in love. The two big news stories of the day were about a governor who was going to try to fall back in love with his wife and about the breakup of the couple from the reality TV series Jon & Kate Plus 8.

Aileen and I joke about an idea that is undoubtedly repeated in homes across America: "If they really want to do a reality show that would entertain people, they ought to film us every day." At the Crowley house, the kids zoom around in their wheelchairs, the nurses and therapists come and go twenty-four hours a day, the medicine flows, the dogs bark and run. Throw in our brothers, cousins, and many friends and you've got yourself a reality show. Maybe even our own network (thanks, but no thanks!). Our conversation quickly turns to couples and how they fall in love in the first place.

Aileen asks me, "When exactly did you fall in love with me?"

I reply, "Honestly, there wasn't one particular moment that I can remember. I think it just evolved."

After our first kiss, I didn't tell Aileen "I love you" or anything, and I didn't go to bed thinking, "Gosh, I love this girl." But I did have strong feelings even after just the first few dates. And by St. Patrick's Day, I knew for sure that this was the girl I was going to marry. It didn't take long.

Now, in Princeton twenty-four years later, I tell Aileen this and ask her, "Okay, your turn. When did you know?"

Aileen says, "Do you remember when we went into New York?"

At first, I'm not sure what she's talking about. Then I think about it and say, "You know what? I do remember. Did we go in with a bunch of guys and girls back in high school?"

Aileen says, "Yes. It was in December, the weekend after that first winter dance. Even before our first kiss. A group of us went into the city to check out the Christmas tree at Rockefeller Center and had lunch at Friday's, and you sat next to me on the bus on the way back home. It was awful traffic getting out of New York and you kind of fell asleep in your seat. We went through the tunnel and your buddy said jokingly, 'John, the driver needs money for the toll.' You were half asleep and you took a dollar from your pocket and in a semi-conscious state handed it up to the driver. You never hesitated. That's when I knew."

The commitment of marriage is greater than any commitment in life. Over the years, Aileen and I have had our share of difficult times. After Megan and Patrick were diagnosed with Pompe disease, we struggled to find a rhythm that would work for our family. We hadn't envisioned a future together being dominated by a disease we had never heard of, by the daily threat to our children's lives, by the constant need for care and demand on resources.

We began to understand in time, though, what mattered most to us. All those things that had drawn us to each other were still there. They were even more deeply seated. Together, we had goals, history, the sort of telepathy that married couples develop over time. We shared a purpose in life. Somehow, we reached a level of maturity where we began to think of our lives together not as a sprint but as a marathon, where the tough patches were not bitter failures but hurdles to overcome.

It occurred to me that night, chatting in bed twenty-four years after we met, and more in love with my wife than ever, that what family really is about is trust.

Without ever saying it out loud or discussing it, Aileen and I developed a couple of rules, each based on an implicit reliance upon and trust in each other. First, when one of us is in a tough spot or a bad mood or slipping into feeling sorry for ourselves, we give it a couple of hours and no longer than that. Second, we are not both allowed to have a sad moment at the same time. In our situation, we just kind of wordlessly realized that if both of us were struggling simultaneously, the whole house would come apart.

That's what I'm getting at when I describe trust as the key element of marriage. Of course it refers to the obvious elements of honesty and fidelity. There's a subtler form of trust at work as well: the knowledge that someone will be there to pick you up when you can't be strong. There's also trust that your partner is going to provide for the family in ways you never could-a division of labor, of sorts.

Much of our early stressful times together just after the kids were diagnosed were exacerbated by key differences in our approach to life. Learning to see those differences as wonderful, valuable enhancements to our family has saved our marriage.

I got it through my head that Aileen is never going to be a person who puts together a spreadsheet of all the nurses' schedules and maps them against the children's activities and then sits down to reconcile all the insurance statements and bills. That's just not who she is. When it comes to actually taking care of the kids, the house, and being the glue that keeps not just our family but our extended family together, however, Aileen is without peer. She is the music around our house every day.

"God's Work Must Truly Be Our Own"

Our family has derived strength from placing faith in one another and in God.

In my spiritual life, I have tried never to ask God for specific intervention, as in "God, please let the Phillies win tonight," or "God, please make this clinical trial work well." I don't have a sense that God intervenes so directly in the world and I don't believe in predetermined fate, either.

But I do agree with what John F. Kennedy said at the end of his inaugural address: "With a good conscience our only sure reward, with history the final judge of our deeds, let us go forth to lead the land we love, asking His blessing and His help, but knowing that here on earth God's work must truly be our own."

When I pray, I try to focus in two directions. I give thanks for life and everything that I've got. And I pray for the people I love to have strength and inspiration in their lives. I pray for my kids: that they're happy, that they're at peace, that God gives them grace. But I don't ever pray, "God, from heaven reach down with your hand and manipulate those cells and allow the enzyme to be as active as it can be and thus reach its target." Instead, what I do pray for is that God will give us strength and inspiration and share His hope and His grace with me so that I can give it to others as they work to develop these treatments and cures. I think that's how God works through each of us to create miracles.

In my personal life, there have been times when I've been very devout in my faith and times when I've been a lot more skeptical and questioned its role. Like a million Irish and Italian kids growing up in New Jersey, I learned the basics of Catholicism early. When I was very young, my family was what you'd call "holiday Catholics": Christmas, Easter, weddings, and funerals. After my dad died, my mother enrolled me in CCD (Confraternity of Christian Doctrine) class at St. John's Church in Bergenfield. I still have the shiny gold CCD book and I remember the teacher would say things like, "Jesus loves you; now let's all draw a rainbow and a picture of your family."

For my first communion, my mother allowed her Italian roots to bloom. She dressed me in a blue velvet tuxedo with the biggest bowtie imaginable and shiny white patent leather shoes. Apparently, the number and depth of your ruffles made you a better Catholic. All my relatives showed up and we went to a little restaurant afterward. This being 1975, my mom hired a long-haired guy to come by and strum a guitar. He closed with "Bye, Bye, Miss American Pie." I thought it was awesome.

After we moved to the nearby town of Norwood a year later, we started to attend Mass more regularly at Immaculate Conception Church. That was really the first time that church, and a church community, connected with me on a deeper level. The parish priest, Father Ken Moore, made quite an impression on me. He was a Carmelite priest-he wore the long robes and all-and had taught at Notre Dame, so he was very educated and fluent in five languages. He spoke in this heavy Irish brogue and was such an impressive and thoughtful guy. I was in fourth grade and we had just moved to a new town, and I was really missing my dad. Father Ken was a magnificent role model-and a paradigm of what a priest should be.

Father Ken's brother, Father Tim Moore, was the parish priest at St. Cecelia's in Englewood. Father Tim's claim to fame, in addition to being a terrific priest himself, was that in the 1940s he had hired a new football coach at St. Cecelia's, a young fellow named Vince Lombardi. It was Lombardi's first coaching job, and he remained very close to the Moore brothers throughout his legendary career. He even made Father Ken the team chaplain of the Green Bay Packers. You can see Father Ken in his robes pacing the sidelines next to Coach Lombardi on clips of the first and second Super Bowls.

Father Ken developed a friendship with Wellington Mara, the longtime owner of the New York Giants. He eventually became the Giants team chaplain and he'd get them to hold a charity fundraiser for the church every year. Father Ken was beloved by the Giants players and coaches, Catholic or not, and they were very respectful. About thirty New York Giants would show up for a fundraiser at our church each year-greats like Phil Simms, Lawrence Taylor, and Phil McConkey. I remember Gary Jeter, who was this enormous defensive lineman. He had hands the size of tennis rackets. He picked me up with one hand and hoisted me into the air and said, "Man, you're a little dude." I said, "Wow, you're a big dude!" He was a gentle giant. Several times, I got to go with Father Ken to Giants Stadium to say Mass in the locker room before practice and games. It was exciting for a kid to be growing up on the periphery of the New York Giants.

I had started to be involved in the church, and it had become a very social aspect of my life. But much more than that, a light had switched on. A priest with a very human touch taught me the true meaning of faith. Without being cognizant of it, I somehow went from belonging to a church and a church community to suddenly praying hard and trying to be more thoughtful about faith and thinking about why we are here and what our purpose is. Sometimes I'd find myself getting to school ten minutes early and I would sit there quietly and pray during the 7:00 a.m. Mass. "God, I need help," I would say. "Would you help me? Would you give me strength?"

At Mass one day, the bulletins included an announcement that said, "We're recruiting this year for new altar boys." After Mass I went up to my mom and told her I wanted to be an altar boy. There was a deacon, Jim Pullati, a younger guy with a family, who did all the training. My biggest fear wasn't getting up in front of the crowd or carrying the cross. My mom had instilled a healthy dose of fear in us that dissuaded us from playing with matches as children-something like "If you touch a match, you'll burn the house and yourself. If the fire doesn't kill you, I will." It worked. Before Mass, the altar boy had to light all the candles. I didn't know how to light a match. My mom actually bought me a little Bic lighter and I would go around and light the candles with it. Once I had the logistics of altar-boying down, I was ready to roll.

What I was getting from religion then is exactly what I get from religion today: strength, inspiration, and a special sense of purpose. My dad dying unexpectedly had shaken me. I thought of all the people who went to bed one night feeling some measure of peace in their lives, only to wake up to a day that would change that feeling forever. Maybe it's a diagnosis about one of their kids, a car accident, a loved one passing on, a lost job, a fire. At some point in our lives it happens to every one of us, sometimes more than once. It is the ultimate question that has bedeviled mankind for eternity: Why would a loving God allow bad things to happen here on Earth? I don't know. But I do know that faith in God, something greater than ourselves, is an important part of our lives in the Crowley family. It has given us strength when we so very much needed it. And I pray, too, that Saint Theresa is right: "God is even kinder than you think."

People ask me all the time how long we think Megan and Patrick are going to live. The truth is, we just don't know. They've already lived a lot longer than they were expected to. They may live many more decades. If they were gone tomorrow, we'd of course be incredibly sad. There'd be an emptiness forever. But I think we'd also want to look back and think that each day with them had its purpose. Each day gave us strength. It taught us about the real meaning of love. We are better human beings because of them. Every single morning when we wake up and we're running around in the bedroom before we run down the hall to fire up the Crowley Fun Machine for the day's activities, Aileen and I stop and listen down the hall. When we hear the whirr of Megan's machine and Patrick's machine, we smile, thank God, and then the whole craziness starts again. Another day. Thank God, another day.

The Diversity of Life

Trust means not just believing in family and God, but trusting in others as well. For the Crowley family, this has meant believing that our kids ought to experience as normal a life as possible-and trusting others to let them do so. It also shows how much they have to teach others.

When we moved to Princeton in 2002, we wanted Megan to go to the regular kindergarten that fall. New Jersey is very progressive about accommodating special needs, and the public schools are fantastic. That summer, we met with the counselors and a team came in to assess Megan and prepare an IEP, Individualized Education Program.

The school told us that they would try to accommodate Megan, but that she had extraordinary needs and they'd never had a kid like her in Princeton public schools. They had had a few autistic kids and a couple of children with cerebral palsy, but they had been in the habit of sending anybody profoundly affected to a county school. We looked at the county school, and it's a wonderful school doing wonderful things for some kids with very difficult situations. But it wasn't what Megan wanted. She wanted to be a regular kid among regular kids. For all that it ravages the muscles in people with Pompe, the disease never affects the mind. Megan, like Patrick and many other Pompe kids we have come to know, is amazingly smart and precocious. We wanted her in the public school.

So we went back and met with the principal, Dr. Ginsburg, and told him what we wanted, and he said, "Okay, we'll do it. We'll do our best to adjust. We'll make it work for Megan." And then he added, "But there's something I need you guys to do for me. Nobody in town really knows you both. You just moved here. I don't want there to be rumors or myths or anything. Let's just put it all out there. We have an orientation in August for the parents of all new incoming kindergartners where I speak and the teachers speak. Would you and Aileen come and speak to the parents about Megan?"

(Continues...)

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Excerpted from CHASING MIRACLES by JOHN F. CROWLEY Ken Kurson Copyright © 2010 by John F. Crowley. Excerpted by permission.
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