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
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
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