The early 2000's
were hectic and full of potential. Within a five year span, I wrote and
directed King's Highway, we bought a house, Jacob was born, I sold another
script, I took a new job at Cartoon Network, and I ran two marathons.
The life
changing moment in our lives was the day Jacob was diagnosed with cystic
fibrosis (CF). When you’re told that your newborn child has a life threatening
illness, your outlook on the world becomes radically different. His well being
becomes priority number one. This is one reason I began working at Cartoon
Network. The company offered stability and health benefits, in addition to the
opportunity for growth.
I felt limited
in what I could do to help spread the word about CF, a relatively unknown
disease, and how to raise money for the Cystic Fibrosis Foundation. Running a
marathon became a way to get people's attention and raise money. Around this
time, I discovered a new way the Internet was allowing people to communicate
and express themselves, something called "web logging." It sounded like a cool way
to keep family and friends up to date on my marathon training, as well as providing information on Jacob's health. And so, I began blogging.
My first blogwas strictly about my training. I kept it for three years. When my body finally told me to "cut this shit out" and
quit running, I began a second blog, ''thunderbolt." It was on that
website that I created "Basement Songs," the periodic column about
the songs that were essential to my life. It was through “Basement Songs” that
I met Jeff Giles, Jason Hare, and several other wonderful bloggers who were
supportive of my writing and my family’s pursuit of finding a cure for CF. When
Jeff approached me about becoming a charter member of the Popdose group staff,
I didn't hesitate. I brought along "Basement Songs," and published my
personal stories for over 100 weeks.
A couple years
after "Basement songs" began running, I was in a conversation with a
family friend. At the time she was a junior editor at Simon & Schuster in
their Young Adult division. She, too, was a fan of "Basement Songs," so when I remarked that I'd
always thought about writing a novel (which is true), she said, ''If you
ever have anything, I'd be glad to read it.''
I took her words
to heart. For two months I worked on adapting one of
my more recent screenplays, the story of a teenage girl with a sibling who has
CF, into a novel. I wrote about fifty pages before I hit a wall. If I'm being
honest, I wasn't prepared to write about cystic fibrosis just yet, not the way
this character me needed me to. However, I didn't want to give up. I really
wanted to try my hand at prose. I had nothing to lose. In need of a story about teenagers, I went into my files and pulled out that old script of mine. I decided to adapt
"Finding the Way" into a novel.
It's been awhile since I posted a chapter of the book. Readership of the blog has had a bit of an uptick, so for those of you who are curious about the content of Basement Songs, here is the chapter I wrote about my son, Jacob. I hope you enjoy it. Aloha.
THE BEATLES
"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).
Julie cooked her homemade meatballs tonight. Oh my God, they are the best meatballs you will ever taste. Don't tell her dad, whose recipe she is working from, but Julie makes them better.
Budd, Karyn and their family came over for dinner and they introduced us to their their new dog. It felt like old times, those nights ten or fifteen years ago when we'd get together on a whim. These days, with high school children, everything is planned. You can't just pop in on a Sunday night anymore. Nevertheless, it was wonderful just to have a casual night together.
Last night I saw Gravity, the new film starring Sandra Bullock and George Clooney, directed by Alfonso Cuaron. It was incredible. I've never seen Bullock better, and Cuaron is a director whose career I will follow for the rest of my life. He is one of those rare directors who can mine human emotion out of spectacle and populous material.
As I drove Sophie to church this morning, I began describing the plot of Gravity. This is one film with a strong female protagonist whose actions are admirable and heroic. I really think Soph might enjoy the film... someday. For, as I told her what happens in Gravity she exclaimed, "The movie sounds BAD!" Mind you, it sounds "bad" to her because Bullock gets stranded in outer space after tragedy strikes and people die. Too serious for Sophie. She gets more like her mother every day.
Today she tried out for the Saugus Swim Team. I'm so proud of her for doing it. She hasn't been on the parks and rec summer swim team for two years, due to family trips. Yet, when she came home from Ohio this summer she began training on her own. She really did her best to get ready for the tryouts and has maintained a good attitude.
"If it doesn't happen it wasn't meant to be," she's said.
Before her tryout Sophie was told that it was going to be tough to make the team. The girls team is very competitive. She didn't let this intimidate her and she did great. I really hope she makes it. Sophie would be an asset to any team simply because she would never give up and you would see a definite improvement in her skills and time. If only I was making the final decision!
Another weekend comes to a close and I'm surprisingly exhausted. I have a creak in my neck and I can barely keep my eyes open.
Wow, what a crazy week this has been. Jacob began 6th grade and Sophie entered high school. It's the end of elementary school for Jacob and the beginning of high school for Sophie and I'm not sure it could have been any more stressful.
As a parent, I worry to death that the two of them will have good teachers, that they'll do well in class, and that they'll avoid the pitfalls that befell me when I was their age.
I recall my last year of elementary school as a weird year in which hormones were raging through my body. I was bigger than most of the other kids, had hair growing in strange places, had experienced a voice change that took me from soprano in the school choir to bass, and felt like a complete nerd because of big hair, big glasses and a low self esteem. In other words, 6th grade kind of sucked. I was lucky to have my best friend, Matt, to hang around with, but I don't recall ever being 100% happy during that year. I'd talk back to my teacher, have outbursts in class (embarrassing to admit) and really wanted to be liked by the cool kids and the girls I pined for.
Still, 6th grade did find me writing my first short story (a mystery called "Midnight") and for some reason my parents allowed me to read mature literature such as Richard Hooker's MASH and Stephen King's 'Salem's Lot. I'm not sure I want my son reading about war, vampires and sex. I also excelled in football, using my size to an advantage. Finally, 6th grade found me really discovering rock music and learning to play the drums.
9th grade was another turning point in my life. I was faced with a choice of playing football or playing in the marching band. Although 9th graders didn't play on varsity, if I chose to play ball throughout high school I would have had to make that decision. It weighed heavy on me for the first month of school. I was leaning toward playing in the band. This was not because of my dad, the school band director. In fact, my parents told me that if I chose to keep playing football I would only have to be in winter band.
The truth was that all of my friends were in band. They had accepted me as Scott Malchus, and not the band director's kid or some punk freshman. I was just Scott and being embraced like this meant the world to me. Not that the football players gave me shit for being in the band. Sure, there were a couple knuckleheads that still adhered to the "jocks vs. band kids" mentality of the 70s (and still used the term "band fag"), but the decent guys I socialized with who were football players never said anything. Two major changes happened in 9th grade that cause me to lose whatever edge I had as a ballplayer.
1. I had stopped growing in 7th grade. Everyone I outsized in junior high caught up and towered over me. Since I'd never worked out in my life, I was a pencil thin, medium sized kid who was easily tossed aside by some monster sized guys.
2. Girls. I went on my first date in 9th grade. Had my first real kiss in 9th grade. I won't go into any further details about 9th grade because Sophie might read this, but let's just say that having girls pay attention to you can sap whatever rage that is brewing inside right out of the body. You know that scene in Raging Bull, the one where DeNiro's Jake LaMotta won't have sex with his wife right before a fight? Yeah, sexual frustration can make a normally meek guy an aggressive football player. Trust me.
Thus, my desire to hit people was waning when I entered high school. Yet, I didn't want to just quit. I still had a competitive side to me that wanted to be an athlete.
The decision was made for me during the first freshman football game. Somehow I wound up one of the starting defensive ends. On one of the last plays of the first half of the first game, I shredded my ACL and ended my football career.
9th grade wound up sucking for a different reason. I had friends and had a blast, socially, but I spent most of the year on crutches and struggled to get my mobility back in my knee. It was a painful, frustrating time. Oh, and I got my heart broken for the first time. But that's another story.
I'm so excited for Sophie. I think she's going to have a great year. She has great friends and I'm impressed with how much she's pushing herself to get ready for swim team tryouts. I just hope she doesn't get her heart broken. Alas, I can't prevent that.
There are other things going on in our household, things I may discuss at a future time. For now, I'll leave you with these two songs. One a favorite from August 1981, when I entered 6th, and the other from August 1984, when I entered 9th.
Jacob got braces last week and we thought the next year was going to be traumatic for all of us. The first night, I've never heard him cry in pain so hard and for so long. There wasn't a dry eye in the house that evening.
The next day, his mouth was still sore and he was irritable because he couldn't eat any of his favorite foods... which are basically the ONLY foods he eats. Besides milkshakes and glasses of whole milk there was nothing he could eat.
The third day, however, things began to take a turn for the better and he's been improving ever since. Tomorrow will be a full week and Jacob's been a real champ. The kid seems to be taking the new addition to his mouth in stride and he's back to being his wise cracking self.
I know, kids get braces all the time, but Jake endures so much in his daily life that this seemed like too much. I'm really proud of how he's doing. He's really maturing.
Speaking of maturing, Sophie has high school orientation tomorrow. WTF?! I'm sitting here listening to INXS, a band whose music I played when I was in high school... when I was HER AGE! Is INXS classic rock? Am I old?
On Tuesday night I attended the Patty Griffin concert at the Wiltern Theater. One of the songs she performed that night was "Be Careful," a song that I featured in the Basement Songs column back in 2009. I love this song and it always reminds me of Sophie.
When I wrote this piece Sophie was still a little girl. Now she's entering high school and I couldn't be prouder. It's a bittersweet feeling, though. She's growing up, and soon, oh so very soon, she won't need her dad any more.
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Since the day we moved into our house, I have regularly snuggled my daughter
Sophie for about 10 minutes before she goes to sleep at night. When she was
younger, it was to help ease her fears over the creaks and rattles of her room
when the lights were off. As she got older, this routine turned into an
opportunity for the two of us to catch up on our days. I found out about how
school was for her, and Sophie asked me questions about my job. For the
past year I have tried to end this nightly routine. Whenever I expressed
this to Julie, my great wife admonished me by saying, "There's going to
come a time when she wants nothing to do with you. Enjoy this while you can. Generally I pooh pooh this comment; I can't
imagine my daughter not wanting her dad around.
I vividly recall dropping her off for the first time at daycare when she was
just two months old. It happened to coincide with my first day at a new job, so
I was already a bundle of raw nerves. Letting her go and placing her into the
care of people I barely knew was one of the worst things I ever had to do, and
after I left the daycare, I had a meltdown in my car before finding the
strength to start the car. I felt like she was already moving on. In 2002, my son Jacob was admitted to the hospital with pneumonia. While
Julie stayed with him down at Children’s Hospital in Los Angeles, I took Sophie
to preschool and went to work, then would pick up Sophie from preschool and we
would drive all the way into the city to see them. It was a long, stressful
week and I leaned on Sophie's tiny shoulders (she was three at the time) to
support me. She cried, missing her mommy, while I tried to put on a brave face
so as to not scare her. I'm ashamed to admit that I lost my cool with my
three-year-old. Amazingly, when I would hug her, apologizing for raising my
voice, Sophie would pat my back and say, "It's okay, Daddy."
We got through that time together, though I was lucky to have the music of
Badly Drawn Boy's About a Boy
and Patty Griffin's 1,000 Kisses
to free my mind from dwelling on things. If there is a moment when I felt like
I made a unique connection with my daughter, it was during that time.
The end of the baseball season is my favorite time of the year. Sophie and I
huddle on the couch to watch our favorite teams battle for a spot in the World
Series. As I pace the room, anxiously waiting the result of every pitch, she'll
ask a hundred questions about the rules of the game, the players, the players'
numbers, the lingo, what an umpire does, strategies and the team colors. When I
throw my arms up in frustration from her bombardment of inquiries, I quickly
apologize and she responds, "It's okay, Daddy."
Last week, most of her classmates went on a weeklong camping trip, and
Sophie didn't want to go. She's always had trouble sleeping over at friends'
houses, so a week in a strange cabin was too much for her. Still, she felt left
out, and decided that come next year, she wanted to go on the school trip.
Julie felt that in order for her to do this, she first had to conquer her fears
of having a sleepover with one of her friends. What this means is getting
accustomed to going to sleep alone and putting an end to our nightly snuggles.
I didn't expect the pangs of sadness that filled me when she told me her
plan. I thought I'd be happy that I didn't have to help her settle and that we
could have a normal conversation each night while sitting on the couch rather
than lying in her bed. This was my first dose of separation anxiety: My little
girl is starting to grow up.
Puberty looms on the horizon. I'll be honest; I'm scared to death about the
changes she's going to go through as she grows into a teenager. It may be a couple
of years away, but soon she's going to start liking boys, and they'll pass her
notes and maybe (gasp) she'll hold hands. I don't even want to talk about what
comes after that. I know how guys can be; I'm one of them. I broke hearts, and
made rude comments, and wasn't always the nicest guy. I wish I could protect
her from all the bad things, but the best I can do is tell her I love her,
comfort her in her low times, raise her up during her triumphs and always -- always -- tell her how much I love her. And
maybe I'll continue slipping songs onto her iPod when she isn't looking, like this
gem from 1,000 Kisses.
Sophie may never realize that I think of her when I hear this song, but that's
fine. Will we maintain the bond we've had since the day she came home from the
hospital? Will she still want to hang out and watch baseball? Will I someday
get to take her to a Springsteen show so she can finally scream out "Big
Man" during "Dancing in the Dark?" Will she still draw me
wonderful pictures that I can hang above my desk at work? Will she still ask me
to snuggle her on occasion when the creaks and rattles of the house have
stirred up some old fears?
This morning at 4:20 AM, I dropped off Julie and the kids at LAX. They flew back to Cleveland to visit Julie's family for three weeks. I've been awake since 3:10 and I feel pretty good. I'm still waiting for the wall to hit me.
THREE WEEKS!
It gets harder and harder to say goodbye to the family when hey go on trips like this one. For this vacation we'll be apart longer than ever before. I wonder if their leaving added to the emotions I felt when Jake and I went to see Man of Steel over the weekend? Could be.
This time around I have some projects to do in the house, little tasks to keep my mind occupied and fill in the void left in the house when they aren't around. I can't talk about them on the Internet because Julie reads this blog.
I plan on writing, too. I need to dive back in and get the pen back on the page. I'm not talking about writing reveiws, either. I want to start another book and I have a new column for Popdose that I hope to begin publishing this week. These three weeks alone would seem ike the ideal time to really dig in and get some work done.
At this very moment I don't feel as if anything I'm writing is making a lick of sense. I suppose that wall has hit me. Or perhaps I've been away from you too long.
Maybe a little of both.
Well, here's song for you, my favorite pop summer song of '13, so far. Reminds me of riding in the car with the family.
