The call came in the middle of the workday, sometime after lunch. Julie was fighting back tears as she drove home from Jacob’s pediatrician’s office. What we had feared was confirmed: Jacob’s failure to thrive at one month old was because he was born with cystic fibrosis (CF). Here is the definition of CF from the Cystic Fibrosis Foundation:
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections, and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
We were vaguely familiar with some of the CF facts after we brought Jacob home from the UCLA medical center. One of his doctors there had mentioned, in passing, that a CF test had been done, but for some reason it hadn’t. Immediately, we did some initial research on the disease, but not too much. Our son was home and out of intensive care Ã¢â‚¬â€ that was what mattered. “Everything’s fine,” we thought. But obviously it wasn’t. When Jacob failed to gain weight and his color continued to be very pale, our pediatrician became concerned. A wonderful, caring man, he wanted to rule out CF after we mentioned what the UCLA doctor had told us when he ordered a blood test.
I should’ve been there. That’s what I was thinking as I hung up the phone. I should’ve been there with Julie and Jacob when the test results were given. But I didn’t believe it was cystic fibrosis. I was optimistic it was a virus or something easily treatable. I should’ve been there.
As I told my boss I was leaving work early to be with my family, the words I spoke didn’t feel real, they sounded far off: “Jacob has cystic fibrosis.” You hear about people having those moments when they feel like they’re watching themselves in a movie as it’s happening. That was me. I can only imagine what Julie felt. She described it to me as the room beginning to spin and the doctor’s words swirling around her head as she tried to remain composed. I should’ve been there.
As I made my way home, the L.A. traffic sped by me in a blur; my trip was over in the blink of an eye. Following the contours of the road through rote memory, I was on remote control. I kept asking myself, “What does this mean Ã¢â‚¬â€ ‘cystic fibrosis’? What does it mean, dammit!“ Those same horrifying facts I had glossed over a few weeks ago began to drill into my skull. Clogged lungs? Malabsorption? Life expectancy? Life expectancy! Dear Christ, I was 32 years old Ã¢â‚¬â€ statistically speaking, most CF patients don’t live long past 30. Was I being told that my precious boy might not make it to his 32nd birthday? How could that be?
When I arrived home I walked in the front door and held Julie. I just wanted to hold her and the kids. I felt like if we curled up in a ball this dream would end and we would awaken the next day to a different test result.
The rest of the evening was spent making phone calls. In an instant, our lives had changed. You become a parent with an understanding that there will be challenges every single day, but the challenges will be worth it because of the love you get in return from your child. It was difficult to wrap my head around this bigger challenge. Yes, I would never waver from being there for my son, but what did the future hold? Was I a weaker father for even questioning these things? That’s how I felt.
Our friends and family offered encouragement, with promises to be there whenever we needed them. My mom said she would drive out from Tucson at the drop of a hat; Julie’s mother was ready to hop on a plane. When I called my friend Matt, he was speechless. Normally a man full of an unabridged dictionary of words, he had none.
Of all the conversations I had that night, I won’t forget the call I got from my cousin Kenny, who lives in Alabama. Kenny is several years older than me and had already lived with CF. Sadly, his son had lost the battle. Yet he was the most hopeful. He told me of the advances made to prolong the lives of people with CF and better the quality of life. This man, who had suffered, was trying to lift Julie and me up.
It took some time for me to realize how gracious it was for Kenny to make that call. What Julie and I soon learned is that all CF families support each other. The day Jacob was diagnosed we became part of a larger family. Sadly, it’s one we wish we weren’t a part of.
It was the end of 2001, and George Harrison was in the news and receiving more radio airplay than he had since the days of the Traveling Wilburys. He had succumbed to cancer and passed away on November 29, a week after Jacob was born. Several TV networks aired documentaries, old concert footage, and Harrison’s videos, many of which I would see on VH1 Classic during the wee hours of the morning as I cradled Jacob back to sleep. I’m not sure if the constant reminders of the Quiet One’s musical legacy were the reason, but that December my brother, Budd, latched onto Harrison’s optimistic song “Here Comes the Sun,” from 1969’s Abbey Road. Sometimes he would say to me, “Hey, bro, here comes the son,” when referring to Jacob. At other times I know he was expressing the hopefulness of the composition. During that sad, tearful Christmas season, one moment remains frozen in my memory.
One night, as “Here Comes the Sun” played on the stereo in our living room, Budd held Jacob up in the air, his tiny frame swimming in a onesie. Budd stared at him with such intensity it was as if he felt he might be able to will the illness out of Jacob’s body. I’ve only seen Budd tear up on a couple of occasions. He handed Jacob off and left the room to collect himself away from the rest of us.
“Here Comes the Sun” has become one of Jacob’s anthems. The same optimism and hope that Harrison and the rest of the Beatles brought to the song is the same optimism and hope that Julie and I have that a cure for CF is close to being discovered. Each year since 2002 we’ve participated in the national CF fundraiser Great Strides. This year will mark our seventh walk.
I’ve also decided to run my third marathon in November as another way to raise money in the fight against CF; Julie has assembled a photo montage to help in our efforts. She did a wonderful job capturing the essence of Jacob, our family, and just a little of what it’s like for him to live with CF. We’ve been blessed that Jacob remains strong. Other families Ã¢â‚¬â€ families with children the same age or younger than Jacob Ã¢â‚¬â€ are less fortunate. Please take a look at the video below, and if you feel compelled, make a donation by going to Jacob’s CF Donation Page. I think you’ll agree that the song we chose for the video is a pretty damn good one.
[kml_flashembed movie="http://www.youtube.com/v/i4l9kQLu2F4" width="425" height="350" wmode="transparent" /]
One more note: in 2006 George Martin remixed and mashed up more than 30 of the Beatles’ greatest songs for the Love album (and the Cirque du Soleil show that incorporates the band’s music). I was excited to hear what he would add to the charm of “Here Comes the Sun.” With tablas and a sitar added to the opening and various Indian instruments used throughout the song, I believe Martin enhanced the song’s spiritual quality. Somewhere, George Harrison is nodding his head in approval.