"HERE COMES THE SUN"
The phone rang sometime in the middle of the day. I was at my desk prepping materials for an upcoming record session at the animation company where I worked. It was busywork to keep my mind occupied while I awaited this call from Julie. She had taken our son, Jacob, then under a month old, to see the pediatrician. Jacob’s failure to thrive had been a cause for concern, and the doctor wanted to rule out the disease cystic fibrosis as the cause of his lack of growth. It was early December 2001.
When I answered, I could hear it in Julie’s voice that she was fighting back tears. What we had feared was confirmed…
Jacob did indeed have cystic fibrosis.
Cystic fibrosis (CF) is an inherited chronic disease that affects approximately 30,000 children and adults in the United States (70,000 worldwide). Due to a defective gene and the protein it produces, a CF patient’s body produces thick, sticky mucus that clogs the lungs and obstructs the pancreas. This mucus can lead to life-threatening lung infections that must be combated daily with a regimen of medicines inhaled via a nebulizer machine, as well as percussive vibrations on the chest and back, usually performed with a device called the Vest. Because the pancreas is obstructed, the natural enzymes used to help the body break down and absorb food are ineffective. A CF patient must take supplemental enzymes with each meal and snack.
The CF gene was discovered in the late ’80s, leading to advancements in treating the disease. While medications have bettered and prolonged the lives of people who live with the disease, it is still a daily battle to stay both physically and emotionally healthy.
Julie and I were familiar with some of this CF information following the dramatic events of Jacob’s birth. He was delivered at thirty-six weeks and immediately placed in the Neonatal Intensive Care Unit at the same Burbank hospital where Sophie was delivered and had her own stay in the NICU. After he was born, it was determined that Jacob’s intestines were blocked by a meconium plug which was preventing him from having a bowel movement. The NICU doctor wanted to operate and remove the obstruction, but when no operating room was available the morning of the scheduled procedure, our tiny infant son was loaded onto a helicopter and flown to UCLA Medical Center where a different doctor would do the operation.
We packed up our things, and even though Julie was still recovering from a C-section, prepared to relocate. Sophie was placed in the care of her aunt and uncle while we drove across town to UCLA. Maybe it was the altitude from the helicopter ride, or perhaps it was some higher power stepping it to stop an unneeded medical procedure, but Jacob finally passed the meconium and the operation was put on hold. Two days later, we were discharged from the hospital. This incident seemed just a bump in the road, and we were on our way home to become the typical American family.
The morning Jacob was released from UCLA, the surgeon spoke to us, the first and only time we met him. It was a routine exchange of information, and although I tried to focus on everything he said, I really just wanted to go home. Then he made a comment that pricked my ears: he said that he believed a cystic fibrosis test had been administered and that he’d forward the results to our pediatrician. Those two words registered somewhere in the corner of my memory. Wasn’t cystic fibrosis the disease my cousin Kenny’s son had? Wasn’t that the disease that took his son’s life when he was just a boy?
I tabled those thoughts for the time being. Jacob was coming home, that’s what mattered. “Everything is fine,” we thought.
Obviously, it wasn't.
On that December afternoon, when I hung up the phone with Julie, my initial thought was, “I should have been there.” Julie shouldn’t have been alone to receive this news. But deep down we didn’t believe it was CF. It had to be a virus or something easily treatable. The optimist in me was certain Jacob would be fine, because everything always seemed to work out for us.
Damn it, I was so wrong. I should have been there.
I told my boss the news, and as I spoke those words, “cystic fibrosis,” I felt removed from my body, as if watching myself in a movie. This unreal feeling continued for the next hour as I left work and drove home. I could only imagine what Julie had experienced. She described the room beginning to spin and the doctor’s words swirling around her head, try as she might to remain composed.
I should have been there.
Information I’d picked up from the Internet ran through my head. Clogged lungs? Malnutrition? One fact cut the deepest: Statistics had the average life expectancy of a CF patient living into his/her early 30’s. Dear Christ, I was 32 years old. Was it possible that my precious boy would not make it to his 32nd birthday? How could that be?
When I arrived home, I walked in the front door and found 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. 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.
The rest of the evening was spent making phone calls. Our friends and family offered encouragement along with promises to be there whenever we needed them. My mom said she would drive out from Tucson at the drop of a hat while 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 suddenly had none. Of all the conversations I had that night, I won’t forget the call I got from my cousin Kenny, telephoning from his home in Alabama. Even though Kenny’s beloved son had lost the battle with CF, Kenny was the most hopeful person I spoke to that night. He told me of the advances made to prolong the lives of people with CF and better their quality of life. This man, who had suffered so much, 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. Julie and I soon learned that all CF families support each other, and the day Jacob was diagnosed we had instantly become members of a much larger family. Sadly, it’s one we wish we weren’t a part of.
2001 crawled to an end. Whatever holiday cheer we mustered was dampened by the news about Jacob. Thank God for Sophie and her cousins to remind us of the joy and love of the holiday season. We didn’t travel to Ohio that year and spent our first Christmas in the new house. I tried to hold on to my optimism, to counter our fears with a determination to make sure Jacob would outlive everyone. Throughout this period, I found myself humming George Harrison’s “Here Comes the Sun” from the Beatles album, Abbey Road. Harrison was in the news as he’d succumbed to cancer in late November which is perhaps why I found myself with the song on my mind. Or perhaps it was because my brother, Budd, had latched on to the song, sometimes saying 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. It was this night that “Here Comes the Sun” played on the stereo in our living room while Budd held Jacob up in the air, my son’s tiny frame swimming in a onesie. Budd stared at him with such intensity, as if he might be able to will the illness out of Jacob’s body, before handing Jacob off and leaving the room to collect himself, away from the rest of us. It was only one of a couple occasions that I’ve ever seen Budd tear up.
“Here Comes the Sun” quickly became one of Jacob’s anthems. The same optimism that Harrison sang about is the same optimism that our family has that a cure for CF is just over the horizon. Since Jacob was diagnosed, our family of friends and relatives have been involved with many fundraisers, from our yearly participation in the national CF Foundation fundraiser, Great Strides, to running marathons, climbing stairs, selling hats and even holding a couple screenings of King’s Highway, the feature movie that I wrote and directed. Our efforts may sound like a lot of work, but it never feels that way.
When your child has an illness, especially one that seems so close to a cure, you willingly do anything you can to make sure that he will see many, many more sunrises in his lifetime.
(I love this remix of "Here Comes the Sun" almost as much as the original).