Great Strides 2015... with an AWESOME video

Jacob has pneumonia again. He has a cough that causes him to double over, shaking his entire body. He's had trouble sleeping through the night thanks to the cough. Well, thanks to CF. A simple cold can quickly turn into something else with CF kids, as it did in this case. But Jake is a champ. Although he's in a lot of pain, he still manages to  crack jokes and make us laugh.

I bring this up as a segue into the following announcement: The Cystic Fibrosis Foundation's Great Strides walk for Valencia, CA (which is where I live) will be on May 9, 2015. This post is the beginning of my fundraising for Great Strides.

Here are some facts that you probably know, but I'm going to repeat them:

Cystic fibrosis is a life-threatening illness that effects the lungs and digestive systems of people born with it. In people with CF, the body produces a thick, sticky mucus that clogs the lungs and obstructs the pancreas.

Because of the mucus in the lungs, bacteria likes to grow and wreak havoc. CF patients often develop lung infections that can be life-threatening. The mucus blocking the pancreas prevents natural enzymes from helping break down food and absorbing nutrients. To date, this has been Jacob's biggest obstacle. But we know families whose children who have to be admitted to the hospital at least once a year.

Every since Jacob was diagnosed with cystic fibrosis at ten weeks old we have participated in Great Strides. In those 13 years, our family has raised over $100,000. This is a figure that I'm very proud of, but until there is a cure for CF we will continue doing whatever we can to raise money and awareness for this horrible illness.

Since 2008, we've been making fundraising videos to help support our fundraising efforts. This year, Jake had a really fun idea that required a little more work on his part and help from his friend, Sam.  I think it turned out pretty cool, and I know that Jacob was very excited about it \.

Please watch the video. Even though he gets a little "animated," I think you'll see that Jake is one great kid. If you listen closely, you can hear his favorite song by One Republic playing in the background.

This year I'm directing people to Jacob's personal fundraising page. I hope you'll go check it out and consider helping us find a cure for cystic fibrosis. Here's the link:

Jacob's Great Strides Fundraising Page

As always, I am humbled by the generosity of my family, friends and the strangers who are kind enough to make a contribution.

Aloha

Basement Songs Rewind: Coldplay, "Fix You"

The 2015 Valencia Great Strides is a little over a month away. Among the things I want to do this year (including personally thanking everyone who donates-- sorry!) is repost some of my CF related posts and columns from the past years.

This year is kind of exciting because Jacob and I are working on a special fundraising video that we hope to have completed this weekend. Fingers crossed,

Anyway, here is a 2011 BS entry for Coldplay's "Fix You." Every time I hear this song, it's hits me with an emotional wallop, especially the live version. This entry ran in April of that year, so there are references to the Indians already playing winning baseball (they would finish 80-82 that year, bleh).

Thanks for reading.

Aloha

Here are two phrases I never thought I’d say in this year: “The Indians swept the Red Sox” and “Cleveland is in first place.” Hope springs eternal each spring when Major League Baseball begins its season. We fans are optimistic even when our team is mid-market and does not have the gargantuan payroll of ESPN favorites like the Yankees and Phillies. A scrappy group of aging vets and wet behind the ears youngsters can show the world that you don’t have to be the richest team to succeed; you can develop talent in the farm leagues and make savvy trades. Yeah, that’s what we fans of smaller market teams tell ourselves each year before the first pitch is thrown.

Springtime is a season full of hope in our household, not just for sporting reasons. The spring also marks the time of year when the Cystic Fibrosis Foundation holds their annual Great Strides walk in our hometown of Santa Clarita, CA. For those of you who have read the Basement Songs over the years, you know why Great Strides is significant to the Malchus family (and the Popdose staff). My son, Jacob, has cystic fibrosis (CF).

CF is a life threatening illness that creates a thick, sticky mucus in the body. This mucus clogs the lungs, creating the potential for infections. It also blocks the pancreas, preventing it from releasing the enzymes he needs to absorb nutrients. There is no cure. Each day, Jacob undergoes three breathing treatments with a nebulizer and dons a chest vibrating device called “The Vest.” He also takes oral enzymes with each meal to ensure that he stays strong and healthy. It’s a hell of a lot for anyone to live with, let alone a spirited nine-year-old boy who just wants to be “normal.” Jacob handles most of his daily routines in stride, although his anger and frustration has risen steadily over the past year.

Each year our family organizes a team of walkers for our local Great Strides. We call ourselves “Team Jacob.” Among the efforts we’ve done in the past is edit short videos to introduce people to Jacob and this dreaded disease. It’s an effective tool, sometimes too effective. Jacob’s big sister, Sophie, can no longer listen to George Harrison’s “Here Comes the Sun” and Bruce Springsteen’s “Workin’ on a Dream,” songs we used in previous videos. Hearing those classic tracks remind her of the images we pieced together and hurt her heart too much. I know how she feels. A couple of years ago a family we know used Coldplay’s “Fix You,” as a part of their campaign and from now on that song will always be associated with CF and that family. Listening to this live version of the song is even more powerful, with the audience singing along with Chris Martin, as I imagine the combined efforts of all CF families and their friends singing as one.

It’s become our tradition to hold a gathering at our home after each Great Strides walk. This is the least we can do to thank our friends and family for joining us in the morning walk and helping support our cause. Over the years our team has grown. In addition to my brother and his family, Julie's brother, Seann, the Cruz family and our neighbors, the Wills, school friends like the Conards, the Boss family and the Stinsons have been there for us. There is also my high school buddy, Jay, and of course, my parents, who drive out from Tucson each year. 2011 was also special because Julie’s mom and dad were visiting from Ohio and were able to experience it with us. I dream of someday having all of the good people who have helped us over the years to come out and join us. As inviting as our small ranch style house is, I don’t think they’d all fit.

Our little party was festive, with music playing in the kitchen, kids running around and tackling each other between belly laughs, pizza and beverages for everyone, and a game of corn hole for all who wanted to play. Meanwhile, with free MLB games on television all weekend, a small group of men sat in the living room and watched the Indians take on the Seattle Mariners. As I’m accustomed to doing during these get togethers I wandered between the small groups and took in bits and pieces of conversations. I sometimes can’t believe how blessed we are to have so many people who care about the welfare of our family. I must admit, though, that I kept getting drawn into the living room, where my brother, my dad and my father-in-law were all enjoying the baseball game.

The Indians are in first place.

What a great feeling for a Cleveland fan. Still, I’d make a major league trade of all the joy I receive from watching my favorite baseball team win some games if I could fix my son’s illness. As much as I like hearing that the Indians are in first, I’d love to hear a different phrase, one that goes like this:

CF stands for cure found.

If you would like to help the Cystic Fibrosis Foundation, you can visit this link to make a donation.

Originally published on Popdose, April 17, 2011

Basement Songs Rewind: Paul Simon, "Father and Daughter"

This was originally published in 2007, when my daughter was 8. Time is a runaway freight train.

I worry about Sophie. My concerns run deep ranging from how does her brother's disease

affect her to is she receiving enough attention? The greatest fear I have for my daughter is that she somehow feels a lack of love on my part. I can tell her "I love you" until I'm blue in the face, but unless my actions show it, these are just words. Because of these fears, I try to set aside time and activities for just the two of us. I'm excited because today she is coming to spend the whole day at work with me, part of a "bring your child to work" activity the studio is having. Something else we love to do is watching baseball games. We have as been to several Dodgers games in the past couple of years. Sophie really tries to follow the game, asking questions about the players and how baseball is played. It's not all about hot dogs and cotton candy. Sophie is a remarkable, smart, talented little girl who is growing up to quickly. I love her dearly and she is the reason Paul Simon's "Father & Daughter" is on of my favorite basement songs.

On of the joys of parenting is pushing your favorite music on to your children. When Sophie was baby, barely speaking, she sang along to "Someday, Someway" by Marshall Crenshaw, and created her own lyrics to The Buggles "Video Killed the Radio Star." She doesn't barely recalls those songs anymore. When I play them for her now, she just looks at me funny. Later, just before Jake was born, she had a favorite Ryan Adams song and always requested several Andrew Bird tracks from his excellent The Swimming Hour cd. And then there's the Boss.  I worship at the altar of Springsteen, and Sophie has been converted into a proud disciple. How many 8- year old girls know the lyrics to "10th Avenue Freeze Out?" Even I have trouble remembering all of the words. Hell, even Springsteen does!

I'll never forget the last show I went to in 2002. The day of the concert, the family was listening to a mix tape I'd made for Sophie, and "Darlington County" began plying. Sophie shouted out "Daddy, do you think Bruce will play this one tonight?" Knowing full well that Bruce made up set lists the day of the show, and that he hadn't played that song much on the tour, I smiled and replied, "You never know." I had a pretty good feeling I wouldn't be hearing "Darlington County" that night. "I hope he does!" She said, before singing along with the chorus.

That night, as you might expect, Bruce and the band DID play "Darlington County". Can you believe that? When Bruce and the E. Street Band next tour, I plan to take Sophie to the concert. She ought to be 9 or 10 and I hope it will be a lasting memory. Of course, as Sophie was quick to point out to me when I told her of this plan, "It will depend if it's a school night, Dad." The girl, God bless her, really loves school. Still, with all of the Springsteen music we share, it is still a schmaltzy, African rhythm folk song by Paul Simon that best sums of how I feel about her.

"Father and Daughter" was originally released on The Wild Thornberrys Movie soundtrack. At the time the movie came out, I was still working for Klasky Csupo, the company that produced The Wild Thornberrys film and TV series. Because I work in the cartoon business, this form of entertainment was an early bonding method with my daughter. She liked Rugrats, Hey Arnold and, yes, The Wild Thornberrys. When the film came out, she was pretty excited to see it. It was released about a year after Jake was born and my worries about Sophie were just beginning. It's not that she expressed anything that would indicate she wasn't feeling loved, but I still worried about it. Halfway through the movie, the song begins to play as the character Eliza (voiced by Lacey Chabert) is sent away from her family for the first time. Just watching Eliza leave her family and the sadness that was felt by every character made me reflect on the precious time I have with Sophie. It feels like just yesterday that I was dropping her off at daycare for her first day. Now, she's nearly done with 2nd Grade and excelling at school and swimming. Where has the time gone?

Simon had already written on children's classic, "St. Judy's Comet", for his son back in the 70's. This new song was written specifically for his young daughter. It's the perfect companion to the early treasure. Like so many of the songs I gravitated to when I began training for my marathons, "Father & Daughter" was relegated to my cheap little MP3 player and it will never be deleted. Sure, I have he Springsteen songs and others the whole family shares, but the simplicity and directness of Simon's lyrics hit home with me.

"I'm gonna watch you shine
Gonna watch you grow
Gonna paint a sign
So you'll always know
As long as one and one is two
There could never be a father who loved his daughter more than I love you"

I am so proud of Sophie. Her caring and generosity, plus her enormous heart so full of love and empathy make her a very special daughter. They also make her a very special human being, one from whom we can all draw inspiration. With so much craziness in our lives, and so many heavy issues to deal with, Sophie handles them with grace, panache, and most of the time, with a smile on her face. As she gets older, I'm sure she'll have her own music to turn to for comfort and guidance. However, I hope that this basement song by Paul Simon somehow makes it into her own collection of music.

--Originally published April 27, 2007 on Popdose. 

So, Yeah, I dropped the ball on Legendary

Last summer I was pretty ambitious about my serial novel, Legendary, which ran on Popdose for three months. I posted a new chapter every other day, each one with at least one song and an original work of art. I was so excited about it and I had planned to write entries about each chapter here on the BS Blog.

What I didn't realize is how exhausting the whole project would be and how quickly my energy was used up at the end of every day. I failed miserably.

I apologize to anyone who was paying attention, which may be about 15 people.

Hey you 15, SORRY!

Anyway, I'm going to do my best to finish what I started and write a little blurb about each music artists I used in the book.

By the way, wach chapter is still up on Popdose, along with the music and art. If you have no idea what I'm talking about, go to this LINK, which explains everything. Links to successive chapters are available at the end of every chapter, if that makes any sense.

I may still publish it as a Kindle book. Any opinions from anyone on that front? It kind of worked out for the Basement Songs book (still available in paperback from Lulu and Amazon- see the column to the right).

Aloha

The Three Strike Rule... slowly coming back

One of the columns I used to write on a regular basis for Popdose was The Three Strike Rule. It was a weekly (!) review of some television series, usually new, based on its first three episodes. With the advent of instant opinions available on the web, I started to fall behind on my reviews and, frankly, lost some interest.

With binge watching and people discovering shows both new and old every day, I've decided to give it a try again. I'm not out to impress anyone, just offer my two cents and maybe start some conversations.

I must also admit that I felt some apprehension writing about television during a period of time when I was submitting spec pilot scripts to managers and agents. But you know what, I'm forty-frickin-five, so if someone wants to hire me they would have done it by now. I'm giving up, mind you, but I'm tired of holding back on writing about the subjects that I enjoy.

I love telkevision, and I do enjoy writing about it. I also enjoy podcasting about TV (which I've been doing for a couple of years), so perhaps this renewed energy for The Three Strike Rule will lead to something new and exciting.

Is that a hint?

Anyway, here's a link to the latest Three Strike Rule over on Popdose.

Aloha