Sunday night and we’ve just returned from the Dodgers game. What a great night. We bought tickets online this afternoon and got to the game just as the National Anthem was being sung (about 5:10). The thing I like about Dodgers Stadium is that no matter where you sit you can see the game really well. The seats are very steep, but it makes up for it by giving everyone a great sight line. Our $6 seats were 5 rows from the top of the stadium. But it was really awesome. We sat in the shade and we were close to concessions. Plus, the game went really fast, with a run scoring 7th inning for the Dodgers.
With a 3 run lead in the 9th, Eric Gagne, the Dodgers unstoppable closer came in to the sound of G’n’R’s “Welcome to the Jungle”. I actually got chills. T was just a really cool sp[orts moment. Makes me want to kick myself that we haven’t gone to more games in the past. Steve always tells me hgow envious he is that we live in a city with a major league baseball team. Now that we know that the cheap seats are great, I think we’ll be attending more games in the future. Sophie likes going to them, too (more for the 7th inning stretch and the tradition of “Take Me Out to the Ballgame”, but hey, it still gets us through most of the game, right?)
We drove home jammin’ to the Boss, all of us singing along to the tape I made Sophie months ago. To complete the night, I got a bootleg Dodgers cap for five bucks as we drove into the parking lot. I think I may have finally become a Dodgers fan tonight., it only took me nine years.
The rest of the weekend has been a mixed bag. Yesterday I ran 9 miles. The run felt great. The mental hurdle of doing 8 last week was gone. It really was like “Lord of the Rings”. I just needed to step over that line of the farthest I’d gone. I have no doubt I’ll be able to run the marathon. And the run felt great, too. When we finished, I checked out the times of the other runners who are doing a 4/1 and we were only 4 minutes behind them. So, we must be doing well.
The key to getting through the day was taking a nap halfway through the day. I was close to falling asleep at lunchtime. By about 1:30, Sophie and I laid down together and I was out like that. But, man, it really revived me for the end of the day. We went over to Budd and Karyn’s to watch a “drive-in” movie. One of their neighbors projected a kids movie on their garage for all of the neighborhood kids. It was really neat. It was like the childhood dream of growing up in a neighborhood that I always wanted.
The night got weird for me when we took out Jake’s vest and did his breathing treatment. It brought me down REAL fast. Budd and I had been high from watching the OSU Washington game, but the minute we brought out the vest… I got very sad. It was like, having them see it… I can’t describe it, really. It’s like, while it’s in our home, we can deal with it and it’s like part of OUR lives. But as soon as we showed it to someone else, then it makes it more real. I don’t know if that makes senses. The same thing happened the first time we took Jake’s breathing machine with us on a trip. Having everyone kind of stare at it in wonder makes me feel… sad.
I wish a day could go by, just one day, in which we didn’t have to think about it. I mean, we’ll always have to think about it, but I wish there was just some sort of escape from it when we’re outside the house. That’ll never happen, though, will it?
Look forward to having tomorrow off and hanging our new screen door. I predict I will be cursing it out within the first hour.
S
Sunday, August 31, 2003
Thursday, August 28, 2003
It's getting late and I want to get to bed, but I have to make an entry. Today I received a donation from my sister, Beth, and her family in Columbus, Ohio. Are you ready for this? $1000. I nearly lost it when Julie told me. And when I say lost it, I nearly cried in the middle of our phone conversation.
Beth and I have always had a strange relationship. She's a writer, too (and a good one, I should add) so we have that kind of creative energy inside of us. She's definitely the most spiritual person in our entire family, and she's always been one of my biggest supporters, whether it is a movie I'm shooting, or a marathon I'm training to run in. Beth contributed to the budgets of both "Mind's Eye" and "King's Highway". That $3000 I talk about, yeah, well, $1000 came from her.
Sometimes it's hard for us because she's 6 years older than me and a thousand miles away. And while we don't always see eye to eye, I love her. I'll be honest; there were a couple of years in which everyone in my family wasn't getting along. We were all nagging at each other. But I think having children of our own has really changed each and every one of us. Since she had her wonderful little boy, Zyg, Beth has become a much more relaxed person. I've noticed how so many things just kind of roll of her back these days. She is a great, great mom, and I'm not just saying that because I'm writing about her in this blog and she may read it (and if you are reading it, "hey, Beth"). She is teaching her son to be tolerant and teaching how to be a good human being. She told me something once that I know I'm going to apply to raising Jacob. She said that it's a big challenge in today's society to raise a son. You have to teach them to respect girls and women, which is difficult in a society that objectifies women as sex objects and expendable.
Important lesson.
Thank you Beth for the awesome donation. I've surpassed the minimum amount that needed to be raised and I'm close to achieving my goal of $5000.
******
Ran for 45 minutes today, about 4 miles (a little over). My right knee is giving me some trouble. My T- band to be exact. Really have to make an effort to stretch AFTER I run. Haven't been doing that enough.
No news on the EL CHARRO script. Still waiting to hear back from the producers. Spoke with Seann again this morning and he's moving ahead with organizing a screening of KH at BGSU.
Now, it's off to bed.
S
Beth and I have always had a strange relationship. She's a writer, too (and a good one, I should add) so we have that kind of creative energy inside of us. She's definitely the most spiritual person in our entire family, and she's always been one of my biggest supporters, whether it is a movie I'm shooting, or a marathon I'm training to run in. Beth contributed to the budgets of both "Mind's Eye" and "King's Highway". That $3000 I talk about, yeah, well, $1000 came from her.
Sometimes it's hard for us because she's 6 years older than me and a thousand miles away. And while we don't always see eye to eye, I love her. I'll be honest; there were a couple of years in which everyone in my family wasn't getting along. We were all nagging at each other. But I think having children of our own has really changed each and every one of us. Since she had her wonderful little boy, Zyg, Beth has become a much more relaxed person. I've noticed how so many things just kind of roll of her back these days. She is a great, great mom, and I'm not just saying that because I'm writing about her in this blog and she may read it (and if you are reading it, "hey, Beth"). She is teaching her son to be tolerant and teaching how to be a good human being. She told me something once that I know I'm going to apply to raising Jacob. She said that it's a big challenge in today's society to raise a son. You have to teach them to respect girls and women, which is difficult in a society that objectifies women as sex objects and expendable.
Important lesson.
Thank you Beth for the awesome donation. I've surpassed the minimum amount that needed to be raised and I'm close to achieving my goal of $5000.
******
Ran for 45 minutes today, about 4 miles (a little over). My right knee is giving me some trouble. My T- band to be exact. Really have to make an effort to stretch AFTER I run. Haven't been doing that enough.
No news on the EL CHARRO script. Still waiting to hear back from the producers. Spoke with Seann again this morning and he's moving ahead with organizing a screening of KH at BGSU.
Now, it's off to bed.
S
Wednesday, August 27, 2003
The day started with a 55 minute run. I tried to push myself a little this morning. I changed my intervals to 5/1, just to test my endurance a little. It felt okay, though my knees bothered me for the first time in many weeks. Don't know if that had something to do with me altering my routine or not. Felt good by the end, though, and I'm just a little tired now.
As I was about to walk out the door, my brother in law, Seann (Julie's youngest sibling) called to discuss the possibilities of me screening King's Highway at Bowling Green (BGSU), where he attends school, and from where I just happen to be an alumnus. I had jokingly said to him a couple of weeks ago that we do a fundraiser by having me fly out there and screen the movie. And here he has started making arrangements. I'm thrilled. Not only could we raise some more money, but also it would be new exposure for the movie. Plus I could invite several of my friends from my BGSU days and show them what I've been up to. I have to call him this weekend with a week in October that would work best. Pretty exciting, though.
I spent part of the day revising my first script called Finding the Way, which I wrote back in the mid 90's. It's an ensemble piece like Dazed and Confused that looks back on my high school days in the late 80's. I edited it a bit and fixed several formatting errors. Essentially I had to reread the whole thing in order to make the changes. I was surprised at how much I still like that one. God, I must have rewritten it four or five times, nothing like I do now. I'm lucky if I do a 3rd draft these days. Perhaps that is why I like FTW better than anything else I've written in a while. Anyway, I sent it, along with the scripts for King's Highway, The Mind's Eye and Soulless to my friend that I had lunch with on Monday. Again, I am trying not to get my hopes up.
Jake is doing so much better. Hardly a cough. What a relief. Julie has a friend (also named Julie) whose son was diagnosed with pseudomonas several months back. His name is Cooper, and he's younger than Jake. They've had a lot of medical issues with Cooper, a lot rougher times than we've experienced. They did a throat culture on Cooper today and they found no traces of the dreaded pseudomonas (God, I know I'm spelling that wrong. I really should know how to spell the names of harmful bacteria). This is a small blessing. I pray that the rest of the year goes smoother for this little boy.
Finally, I spoke with Cousin Dave (another BGSU alum, and my freshman roommate) about hats this afternoon. He’s working with me in having Team CF hats made for the runners and anyone who wants to show their support for us. I've received samples the past couple of days and I chose two different styles that I think will be really stylish and also practical for the runners. Anyone who reads this that is interested in buying one of the hats, we'll be selling them for $10 starting in September. Email me and I'll put one aside for you.
See, every day isn't all gloom and doom on the old Malchus blog. Now, if I could just get those damn cats to stop dropping loads in our front flowerbed, life would be harmonious.
S
As I was about to walk out the door, my brother in law, Seann (Julie's youngest sibling) called to discuss the possibilities of me screening King's Highway at Bowling Green (BGSU), where he attends school, and from where I just happen to be an alumnus. I had jokingly said to him a couple of weeks ago that we do a fundraiser by having me fly out there and screen the movie. And here he has started making arrangements. I'm thrilled. Not only could we raise some more money, but also it would be new exposure for the movie. Plus I could invite several of my friends from my BGSU days and show them what I've been up to. I have to call him this weekend with a week in October that would work best. Pretty exciting, though.
I spent part of the day revising my first script called Finding the Way, which I wrote back in the mid 90's. It's an ensemble piece like Dazed and Confused that looks back on my high school days in the late 80's. I edited it a bit and fixed several formatting errors. Essentially I had to reread the whole thing in order to make the changes. I was surprised at how much I still like that one. God, I must have rewritten it four or five times, nothing like I do now. I'm lucky if I do a 3rd draft these days. Perhaps that is why I like FTW better than anything else I've written in a while. Anyway, I sent it, along with the scripts for King's Highway, The Mind's Eye and Soulless to my friend that I had lunch with on Monday. Again, I am trying not to get my hopes up.
Jake is doing so much better. Hardly a cough. What a relief. Julie has a friend (also named Julie) whose son was diagnosed with pseudomonas several months back. His name is Cooper, and he's younger than Jake. They've had a lot of medical issues with Cooper, a lot rougher times than we've experienced. They did a throat culture on Cooper today and they found no traces of the dreaded pseudomonas (God, I know I'm spelling that wrong. I really should know how to spell the names of harmful bacteria). This is a small blessing. I pray that the rest of the year goes smoother for this little boy.
Finally, I spoke with Cousin Dave (another BGSU alum, and my freshman roommate) about hats this afternoon. He’s working with me in having Team CF hats made for the runners and anyone who wants to show their support for us. I've received samples the past couple of days and I chose two different styles that I think will be really stylish and also practical for the runners. Anyone who reads this that is interested in buying one of the hats, we'll be selling them for $10 starting in September. Email me and I'll put one aside for you.
See, every day isn't all gloom and doom on the old Malchus blog. Now, if I could just get those damn cats to stop dropping loads in our front flowerbed, life would be harmonious.
S
Tuesday, August 26, 2003
Tuesday night and I'm at home enjoying a beer that I brewed myself and some quiet time before I delve back into an old script and begin yet another revision....
Actually, I'm chewing on this beer that I brewed six months ago. There is so much sediment in this bottle that I'll have to brush my teeth afterwards just to get the grit off. But I digress.
Today was a rest day, so I did not run or cross train. I actually slept in this morning after staying up late to watch "Punch-Drunk Love". Adam Sandler is really good in it. I'm curious to see what he does next dramatically. He definitely has some range (never thought I'd hear myself say that).
Spend part of the day stressing over my job. The company is making more cuts and I never feel like I'm safe from the axe. It's a stressful dilemma for anyone, but compounded more by the fact that we need the benefits so badly. I can't imagine trying to pay for all of the medication without insurance. Or, trying to pay for the insurance without a company to cover some of the costs. It's probably my biggest worry when it comes to my job.
Today I really felt like, "Damn, did I make the right decision coming out here?" I mean, if I were a teacher, would I be faced with this fear of cutbacks on a regular basis. This is really a messed up situation because the entertainment industry is not a stable job industry to begin with. And I've known that since day one. Especially for writers; that is, writers who are getting paid to write. I dream of the day when someone wants ME to write a script for them. But would I be able to quit this job? Not unless they're paying a lot of money.
Met with a friend of mine yesterday who is a voice over agent. We'll call him Wes (because, you know, that's his name). Anyway, Wes is going to send a couple of my scripts to a friend of his who is a manager. He doesn't promise anything. To be honest, I don't expect anything to happen. I've gotten so used to being turned down I feel like I'm in 7th grade again. Her name was Liz Gray and I.... er, never mind.
I'm trying to figure out what scripts to send. I know "King's Highway" will be one of them, and of course "The Mind's Eye". Should I send 2 more? And what should they be? I know from my experience on "King's Highway" that my work will appeal to people, but reading is subjective. I guess I'll send "Finding the Way" (my 80's high school script) and "Soulless" (homage to Carpenter movies w/ a clone twist) and we'll go from there. What harm can be done? If they say no thanks, well, I've heard that before.
Supposed to meet with Ryan and other El Charro gang on Thursday to go over what will probably be a page 1 rewrite. At the moment I'm not too thrilled, but I'll wait to see what they show me.
On that note, I'll say goodnight.
Wouldn't it be nice if I weren’t so down all the time? Here's a positive note to end on: I got a wonderful email from my good friend Brian McMahon today. Brian and I were college roommates and had several adventures in college. I almost burned down our apartment in his room. And I reestablished contact with another college friend, Brody McDonald, who starred in my senior film.
There, doesn't that fell better. All nice and cheery.
S
Actually, I'm chewing on this beer that I brewed six months ago. There is so much sediment in this bottle that I'll have to brush my teeth afterwards just to get the grit off. But I digress.
Today was a rest day, so I did not run or cross train. I actually slept in this morning after staying up late to watch "Punch-Drunk Love". Adam Sandler is really good in it. I'm curious to see what he does next dramatically. He definitely has some range (never thought I'd hear myself say that).
Spend part of the day stressing over my job. The company is making more cuts and I never feel like I'm safe from the axe. It's a stressful dilemma for anyone, but compounded more by the fact that we need the benefits so badly. I can't imagine trying to pay for all of the medication without insurance. Or, trying to pay for the insurance without a company to cover some of the costs. It's probably my biggest worry when it comes to my job.
Today I really felt like, "Damn, did I make the right decision coming out here?" I mean, if I were a teacher, would I be faced with this fear of cutbacks on a regular basis. This is really a messed up situation because the entertainment industry is not a stable job industry to begin with. And I've known that since day one. Especially for writers; that is, writers who are getting paid to write. I dream of the day when someone wants ME to write a script for them. But would I be able to quit this job? Not unless they're paying a lot of money.
Met with a friend of mine yesterday who is a voice over agent. We'll call him Wes (because, you know, that's his name). Anyway, Wes is going to send a couple of my scripts to a friend of his who is a manager. He doesn't promise anything. To be honest, I don't expect anything to happen. I've gotten so used to being turned down I feel like I'm in 7th grade again. Her name was Liz Gray and I.... er, never mind.
I'm trying to figure out what scripts to send. I know "King's Highway" will be one of them, and of course "The Mind's Eye". Should I send 2 more? And what should they be? I know from my experience on "King's Highway" that my work will appeal to people, but reading is subjective. I guess I'll send "Finding the Way" (my 80's high school script) and "Soulless" (homage to Carpenter movies w/ a clone twist) and we'll go from there. What harm can be done? If they say no thanks, well, I've heard that before.
Supposed to meet with Ryan and other El Charro gang on Thursday to go over what will probably be a page 1 rewrite. At the moment I'm not too thrilled, but I'll wait to see what they show me.
On that note, I'll say goodnight.
Wouldn't it be nice if I weren’t so down all the time? Here's a positive note to end on: I got a wonderful email from my good friend Brian McMahon today. Brian and I were college roommates and had several adventures in college. I almost burned down our apartment in his room. And I reestablished contact with another college friend, Brody McDonald, who starred in my senior film.
There, doesn't that fell better. All nice and cheery.
S
Monday, August 25, 2003
The 8 miles went well on Saturday. I discovered that waiting two days between runs is too much. My legs were way tired when I started running and it took, like, 2 miles to get loose. Never did find my stride, though. Beth definitely sets a faster pace when it's just the two of us.
This morning I ran an "easy" 40, which essentially meant get your butt on the street for 40 minutes. Hopefully, Wednesday will be much smoother.'
I have to start my follow up letter. Donations have tapered off... actually they've stopped completely. Need to work on that.
That's all for now. A relatively mellow weekend. Jake is feeling better. I haven't spoken to Jules today, but he didn't cough when I was with him this morning, so let's pray he's out of the woods.
This morning I ran an "easy" 40, which essentially meant get your butt on the street for 40 minutes. Hopefully, Wednesday will be much smoother.'
I have to start my follow up letter. Donations have tapered off... actually they've stopped completely. Need to work on that.
That's all for now. A relatively mellow weekend. Jake is feeling better. I haven't spoken to Jules today, but he didn't cough when I was with him this morning, so let's pray he's out of the woods.
Friday, August 22, 2003
Okay, here's my bit about Springsteen. Hopefully it won't come off like some kind of Eric Alterman/Backstreets Magazine fanatical rant, but here's what I have to say...
When Bruce Springsteen's "The Rising" came out in the summer of 2002, the nation was still reeling from the terrorist attacks on NY and DC. His album, using images and emotions tied to Sept. 11 is full of hope, loss, redemption and the affirmation of life. It's a remarkably crafted album and I consider it one of his finest.
At that time in our lives, we were still coming to terms with Jacob's diagnosis. It had been over 6 months, but many of the emotions I was dealing with (or trying not to deal with) were still under the surface. I had my game face on. Then I bought this album.
"The Rising" proved to be a cathartic listening experience for me. So many of the emotions I had bottled up were released when I listened to songs like "Lonesome Day", "Nothing Man" and "Into the Fire". And one song in particular became my song to Julie. The upbeat melody countered the lyrics that seemed to be talking about life in the Malchus house. That song is "Waitin' On A Sunny Day". Here are the lyrics:
It's rainin' but there ain't a cloud in the sky
Musta been a tear from your eye
Everything'll be okay
Funny thought I felt a sweet summer breeze
Musta been you sighin' so deep
Don't worry we're gonna find a way
I'm waitin', waitin' on a sunny day
Gonna chase the clouds away
Waitin' on a sunny day
Without you I'm workin' with the rain fallin' down
Half a party in a one dog town
I need you to chase the blues away
Without you I'm a drummer girl that can't keep a beat
And ice cream truck on a deserted street
I hope that you're coming to stay
I'm waitin', waitin' on a sunny day
Gonna chase the clouds away
Waitin' on a sunny day
Hard times baby, well they come to tell us all
Sure as the tickin' of the clock on the wall
Sure as the turnin' of the night into day
Your smile girl, brings the mornin' light to my eyes
Lifts away the blues when I rise
I hope that you're coming to stay
Before this album came out I was already a Springsteen nut. Borderline psychotic. Oh, I wasn't above being critical ("Human Touch", anyone?) But he really could do no wrong as an artist. I have always been a lover of music. My mom raised me listening to the Broadway hits of the 70's. I used to ride around in grocery carts singing the songs from "Chorus Line" and "Chicago". And rock and roll became my escape, just like so many adolescent boys. I didn't discover Springsteen until I went to college. Once I started paying attention to what he was saying, though, I couldn't stop spinning his records (remember those) and playing his cd's.
An interesting thing happened in February. CBS aired an hour long Springsteen concert special which I recorded because I knew we'd being putting the kids down. As I was setting the VCR, Sophie asked what I was taping. When I told her, she told me she wanted to watch the "Springsteen" the next morning. Thinking there was no way she'd give up the "Rugrats" for a 50 year old rocker, I said yes. The first thing she asked to watch the next morning was.... “Rugrats�. But the next thing she wanted watch was, yes, the Springsteen "Rising" concert.
She loved it! Especially Soozie Tyrell, the violin player. Sophie would take a recorder she had, pull off the bottom piece and shove a drumstick in the end. This gave her a "violin". And with the other drum stick, she'd play along with all of the songs. On that same morning, I decided to try and watch the tape while giving Jake his breather. He only likes watching music videos during his breathing treatments (i.e. The Wiggles... or "WiWi's" as he says... and Sesame Street). You can imagine the pride that shot through me as he sat still for all of the songs. My God, there's nothing better in life than seeing your children latch on to the same fanatical things you appreciate. (That's a little much, huh?)
I have infected my family with Bruce-mania. Julie and I were married to a Springsteen song ("Book of Dreams"). Jacob loves jumping up and down to "Dancing in the Dark". My daughter knows who the freakin' Big Man is and knows about the changes made uptown when he joined the band. How cool is that.
Many (most) of you must think I'm a freak. But this music is my release. It helps me escape my problems and also deal with them. I can cry openly to a Springsteen song and no one will think I'm strange. And when you understand how much his music has impacted my life, particularly in the past year, you then get an idea of how powerful Sunday's concert was to me.
There were many factors that made this concert so special. I was with my brother. It was a glorious, outdoor summer concert. Our seats were great. But most importantly, it was just a good show. No big messages. A great mix of powerful, emotional songs combined with garage band rockers. It was one of those nights where I knew what songs he would play for sure, had an idea of what songs he'd probably play, and was still surprised. When I got home, I wrote down some notes. These four stuck out at me (mind you, most of my notes were "Max was on fire tonight" and "Nils was awesome!")
Anyway...
"Darlington County": I made Sophie her own Springsteen tape and this is one of the tunes on it. The day of the show, we were doing errands and this song was playing in the van. She asked me if Bruce (she calls him Bruce now) would play this one. I didn't think so, but I said, "Maybe, Soph." As soon as I heard the guitar lick, I couldn't help but think of my little girl.
"Empty Sky": Halfway through this moving number about the twin towers, Budd leaned in to me and said, "I can't believe it's almost been two years." I read several "legitimate" reviews the day after the show and they all were disappointed for Springsteen's lack of "messages" to the crowd. I think this here is a perfect example that the music did the talking.
"You're Missing": I openly wept. Such a haunting, sad song about loss. I could only think of all of the families who have lost a child to CF. And I thought of my son.
"Waitin' On A Sunny Day": The only thing that could have made this song better is if my wife and kids had been there to sing it with me.
That's enough about Bruce Springsteen. This entry is WAY too long. I hope you all get where I'm coming from and don't think I'm too nuts. It may be a little late for that, huh?
Scott
When Bruce Springsteen's "The Rising" came out in the summer of 2002, the nation was still reeling from the terrorist attacks on NY and DC. His album, using images and emotions tied to Sept. 11 is full of hope, loss, redemption and the affirmation of life. It's a remarkably crafted album and I consider it one of his finest.
At that time in our lives, we were still coming to terms with Jacob's diagnosis. It had been over 6 months, but many of the emotions I was dealing with (or trying not to deal with) were still under the surface. I had my game face on. Then I bought this album.
"The Rising" proved to be a cathartic listening experience for me. So many of the emotions I had bottled up were released when I listened to songs like "Lonesome Day", "Nothing Man" and "Into the Fire". And one song in particular became my song to Julie. The upbeat melody countered the lyrics that seemed to be talking about life in the Malchus house. That song is "Waitin' On A Sunny Day". Here are the lyrics:
It's rainin' but there ain't a cloud in the sky
Musta been a tear from your eye
Everything'll be okay
Funny thought I felt a sweet summer breeze
Musta been you sighin' so deep
Don't worry we're gonna find a way
I'm waitin', waitin' on a sunny day
Gonna chase the clouds away
Waitin' on a sunny day
Without you I'm workin' with the rain fallin' down
Half a party in a one dog town
I need you to chase the blues away
Without you I'm a drummer girl that can't keep a beat
And ice cream truck on a deserted street
I hope that you're coming to stay
I'm waitin', waitin' on a sunny day
Gonna chase the clouds away
Waitin' on a sunny day
Hard times baby, well they come to tell us all
Sure as the tickin' of the clock on the wall
Sure as the turnin' of the night into day
Your smile girl, brings the mornin' light to my eyes
Lifts away the blues when I rise
I hope that you're coming to stay
Before this album came out I was already a Springsteen nut. Borderline psychotic. Oh, I wasn't above being critical ("Human Touch", anyone?) But he really could do no wrong as an artist. I have always been a lover of music. My mom raised me listening to the Broadway hits of the 70's. I used to ride around in grocery carts singing the songs from "Chorus Line" and "Chicago". And rock and roll became my escape, just like so many adolescent boys. I didn't discover Springsteen until I went to college. Once I started paying attention to what he was saying, though, I couldn't stop spinning his records (remember those) and playing his cd's.
An interesting thing happened in February. CBS aired an hour long Springsteen concert special which I recorded because I knew we'd being putting the kids down. As I was setting the VCR, Sophie asked what I was taping. When I told her, she told me she wanted to watch the "Springsteen" the next morning. Thinking there was no way she'd give up the "Rugrats" for a 50 year old rocker, I said yes. The first thing she asked to watch the next morning was.... “Rugrats�. But the next thing she wanted watch was, yes, the Springsteen "Rising" concert.
She loved it! Especially Soozie Tyrell, the violin player. Sophie would take a recorder she had, pull off the bottom piece and shove a drumstick in the end. This gave her a "violin". And with the other drum stick, she'd play along with all of the songs. On that same morning, I decided to try and watch the tape while giving Jake his breather. He only likes watching music videos during his breathing treatments (i.e. The Wiggles... or "WiWi's" as he says... and Sesame Street). You can imagine the pride that shot through me as he sat still for all of the songs. My God, there's nothing better in life than seeing your children latch on to the same fanatical things you appreciate. (That's a little much, huh?)
I have infected my family with Bruce-mania. Julie and I were married to a Springsteen song ("Book of Dreams"). Jacob loves jumping up and down to "Dancing in the Dark". My daughter knows who the freakin' Big Man is and knows about the changes made uptown when he joined the band. How cool is that.
Many (most) of you must think I'm a freak. But this music is my release. It helps me escape my problems and also deal with them. I can cry openly to a Springsteen song and no one will think I'm strange. And when you understand how much his music has impacted my life, particularly in the past year, you then get an idea of how powerful Sunday's concert was to me.
There were many factors that made this concert so special. I was with my brother. It was a glorious, outdoor summer concert. Our seats were great. But most importantly, it was just a good show. No big messages. A great mix of powerful, emotional songs combined with garage band rockers. It was one of those nights where I knew what songs he would play for sure, had an idea of what songs he'd probably play, and was still surprised. When I got home, I wrote down some notes. These four stuck out at me (mind you, most of my notes were "Max was on fire tonight" and "Nils was awesome!")
Anyway...
"Darlington County": I made Sophie her own Springsteen tape and this is one of the tunes on it. The day of the show, we were doing errands and this song was playing in the van. She asked me if Bruce (she calls him Bruce now) would play this one. I didn't think so, but I said, "Maybe, Soph." As soon as I heard the guitar lick, I couldn't help but think of my little girl.
"Empty Sky": Halfway through this moving number about the twin towers, Budd leaned in to me and said, "I can't believe it's almost been two years." I read several "legitimate" reviews the day after the show and they all were disappointed for Springsteen's lack of "messages" to the crowd. I think this here is a perfect example that the music did the talking.
"You're Missing": I openly wept. Such a haunting, sad song about loss. I could only think of all of the families who have lost a child to CF. And I thought of my son.
"Waitin' On A Sunny Day": The only thing that could have made this song better is if my wife and kids had been there to sing it with me.
That's enough about Bruce Springsteen. This entry is WAY too long. I hope you all get where I'm coming from and don't think I'm too nuts. It may be a little late for that, huh?
Scott
Rode the bike this morning. Looking forward to the 8 mile run tomorrow. Rebecca won't be there because she twisted her ankle. Expecting the hat samples from Dave early next week, that's kind of exciting, too.
Jake still has that nasty cough, though I just got off the phone with him and he sounds like he isn't even sick. He can say surprise, now ("SUh-Pise"). Sophie had a great day at Pre School. I'm so proud of how well she's doing, even though it's been one week. Still, she loves it. I think it's good for her because she's finally with kids her own age.
Jake still has that nasty cough, though I just got off the phone with him and he sounds like he isn't even sick. He can say surprise, now ("SUh-Pise"). Sophie had a great day at Pre School. I'm so proud of how well she's doing, even though it's been one week. Still, she loves it. I think it's good for her because she's finally with kids her own age.
Thursday, August 21, 2003
Didn’t run this morning. I was too tired. Opted for some Yoga instead. Yesterday I did 40 minutes. I didn’t run my usual route. I think I pushed myself too hard on Tuesday and I certainly felt it.
Jake is doing better. Though, he has this nasty cough. A friend of mine at Klasky Csupo told me that he had a friend of his pass away from CF recently. She was 25. Every time Jake coughs, that entered my mind.
I’m trying to stop living with this cloud hanging over my head. I’m trying to focus on how well Jake is doing. I’m trying to stop thinking about death and telling myself that he’s not going to die, not from CF anyway. It’s hard.
I want to be optimistic. I used to call myself that, an optimist. Now I live in the NOW. I want to believe that a cure is coming and that he’s going to beat this thing. But there’s this weight sitting on my chest that makes it difficult to believe those things.
I pray to God that this passes and that I can grasp on to the hope that everyone else has. For now, it’s just about getting through the day.
Listen to me, what a poor little baby. I’m not the one with the disease.
Positive thoughts.
Jake is doing better. Though, he has this nasty cough. A friend of mine at Klasky Csupo told me that he had a friend of his pass away from CF recently. She was 25. Every time Jake coughs, that entered my mind.
I’m trying to stop living with this cloud hanging over my head. I’m trying to focus on how well Jake is doing. I’m trying to stop thinking about death and telling myself that he’s not going to die, not from CF anyway. It’s hard.
I want to be optimistic. I used to call myself that, an optimist. Now I live in the NOW. I want to believe that a cure is coming and that he’s going to beat this thing. But there’s this weight sitting on my chest that makes it difficult to believe those things.
I pray to God that this passes and that I can grasp on to the hope that everyone else has. For now, it’s just about getting through the day.
Listen to me, what a poor little baby. I’m not the one with the disease.
Positive thoughts.
Tuesday, August 19, 2003
Ran this morning after yesterday’s, shall we say, self induced sickness.
I did 4 miles in a little over 40 minutes using a 4 / 1 run walk pace. Felt good. I have to run at least 2 more times this week. I must admit that I'm a little nervous about the 8 miles on Saturday. I don't know why. I've done 7 before (without using the run / walk). Anyway, I’m sure it will be fine. The new shoes felt great and after about 10 minutes I got used to the running belt and the water bottle on my back.
Jake has a nasty cold. His doctors put him on antibiotics yesterday, so now he gets another oral med in the morning. For any of you who are parents, you know how heartbreaking it is to hear your sick child crying. This morning Jules was putting him in the Vest and he just had that "Mom, why do we have to do this" kind of cry going on. I didn't want to leave for work when I heard that. I wanted to scoop him up and hold him. I don't know how Julie does it all day.
That's all for now.
S
I did 4 miles in a little over 40 minutes using a 4 / 1 run walk pace. Felt good. I have to run at least 2 more times this week. I must admit that I'm a little nervous about the 8 miles on Saturday. I don't know why. I've done 7 before (without using the run / walk). Anyway, I’m sure it will be fine. The new shoes felt great and after about 10 minutes I got used to the running belt and the water bottle on my back.
Jake has a nasty cold. His doctors put him on antibiotics yesterday, so now he gets another oral med in the morning. For any of you who are parents, you know how heartbreaking it is to hear your sick child crying. This morning Jules was putting him in the Vest and he just had that "Mom, why do we have to do this" kind of cry going on. I didn't want to leave for work when I heard that. I wanted to scoop him up and hold him. I don't know how Julie does it all day.
That's all for now.
S
Monday, August 18, 2003
It's been several days since I last wrote. I finished that script last Tuesday (and promptly mowed off all of the growth on my face). Because I write long hand, I then had to endure typing the entire thing. I finally completed typing it yesterday morning.
In the process I sacrificed a couple of entries and skipped a day of running. I'll tell you, one day between running is good, two is murder. My body did NOT want to get up and run last Thursday.
We ran 6 miles this past Saturday and our team of 3 (Beth, Rebecca and myself) decided that we would run the marathon as a team and finish as a team. To me, that's the whole point of training together. So, when we all get to Hawaii, we'll be able to motivate one another all the way to the finish line.
We run 8 miles this week. I'm a little anxious. This will definitely be the farthest I’ve ever run. I kind of feel like Sam in "Lord of the Rings" (the movie) when he stops in the fields and says to Frodo, "This is the farthest I've ever been..."
Picked up some new shoes that I’m stoked to try out. Guess I'll have to wait until tomorrow. Springsteen was last night and I opted to sleep in (and sleep off those beers I drank). The show was awesome. More on that later.
Sophie began pre-school this morning and the fear Julie and I had that she would have a real hard time were put to rest by Sophie. She did SOOO well at school today. I'm so proud of her.
Poor Jake woke up in the middle of the night with a nasty, croup sounding cold. Of course, any time he gets a cold is cause for worry. A cold can turn into something worse so quickly for anyone with CF, especially little kids. He seems to be doing better by midday. Think good thoughts.
S
In the process I sacrificed a couple of entries and skipped a day of running. I'll tell you, one day between running is good, two is murder. My body did NOT want to get up and run last Thursday.
We ran 6 miles this past Saturday and our team of 3 (Beth, Rebecca and myself) decided that we would run the marathon as a team and finish as a team. To me, that's the whole point of training together. So, when we all get to Hawaii, we'll be able to motivate one another all the way to the finish line.
We run 8 miles this week. I'm a little anxious. This will definitely be the farthest I’ve ever run. I kind of feel like Sam in "Lord of the Rings" (the movie) when he stops in the fields and says to Frodo, "This is the farthest I've ever been..."
Picked up some new shoes that I’m stoked to try out. Guess I'll have to wait until tomorrow. Springsteen was last night and I opted to sleep in (and sleep off those beers I drank). The show was awesome. More on that later.
Sophie began pre-school this morning and the fear Julie and I had that she would have a real hard time were put to rest by Sophie. She did SOOO well at school today. I'm so proud of her.
Poor Jake woke up in the middle of the night with a nasty, croup sounding cold. Of course, any time he gets a cold is cause for worry. A cold can turn into something worse so quickly for anyone with CF, especially little kids. He seems to be doing better by midday. Think good thoughts.
S
Wednesday, August 13, 2003
For those of you wondering where I came up with the title of my blog....
"If I Should Fall Behind"
lyrics by Bruce Springsteen
We said we'd walk together baby come what may
That come the twilight should we lose our way
If as we're walkin a hand should slip free
I'll wait for you
And should I fall behind
Wait for me
We swore we'd travel darlin' side by side
We'd help each other stay in stride
But each lover's steps fall so differently
But I'll wait for you
And if I should fall behind
Wait for me
Now everyone dreams of a love lasting and true
But you and I know what this world can do
So let's make our steps clear that the other may see
And I'll wait for you
If I should fall behind
Wait for me
Now there's a beautiful river in the valley ahead
There 'neath the oak's bough soon we will be wed
Should we lose each other in the shadow of the evening trees
I'll wait for you
And should I fall behind
Wait for me
Darlin' I'll wait for you
Should I fall behind
Wait for me
******
Something about this song feels so right in terms of running as a team, and about life in general.
S
"If I Should Fall Behind"
lyrics by Bruce Springsteen
We said we'd walk together baby come what may
That come the twilight should we lose our way
If as we're walkin a hand should slip free
I'll wait for you
And should I fall behind
Wait for me
We swore we'd travel darlin' side by side
We'd help each other stay in stride
But each lover's steps fall so differently
But I'll wait for you
And if I should fall behind
Wait for me
Now everyone dreams of a love lasting and true
But you and I know what this world can do
So let's make our steps clear that the other may see
And I'll wait for you
If I should fall behind
Wait for me
Now there's a beautiful river in the valley ahead
There 'neath the oak's bough soon we will be wed
Should we lose each other in the shadow of the evening trees
I'll wait for you
And should I fall behind
Wait for me
Darlin' I'll wait for you
Should I fall behind
Wait for me
******
Something about this song feels so right in terms of running as a team, and about life in general.
S
My friend Joan Considine Johnson is a writer on the television series, DOC (on the PAX network and starring country singer Billy Ray Cyrus), and she wrote an episode that featured a storyline about CF. She sent me a tape (with a donation), which Jules and I watched last night. I'm being lazy, so I'm just going to paste the email I sent to Joan right here:
**************
Joan,
We received your donation and the DOC tape yesterday. Thank you so much for helping out.
Julie and I watched the episode you sent last night and I thought it was very good. I like this show. I wish I watched it more. Nice job on the script, too. I like how all of the story lines had a connection. The teacher who suffered a great loss in her life ties in with the nurse and the loss she felt. The theme of parenthood between the nurse and the lawyer related to how the cop and his wife handled their son's predicament. And of course, all of this, loss and parenthood tied into the girl with CF, who has lost both parents and must now face her own mortality.
It must have been tough trying to explain so much CF info in an hour program, and still stay within the confines of your structured series. "7th Heaven" did an episode about CF this year, too. One of the leads has a stepsister with CF and they featured said sister as the character on the show with CF. I’ll be honest, I liked the way DOC did their show better.
(On a side note, the only reason I even watch "7th Heaven" is because the lead from my movie had a reoccurring role the past two seasons).
There were two things that really struck me about the episode, being a parent with a child who has CF.
1. I felt that the girl was a little old just now learn she had CF. Although I've heard of varying cases of the disease, for as sick as she was supposed to be. And actually, she didn't seem that sick to me to have pneumonia. I realize this is nitpicking (and I really liked the young actresses performance, otherwise). Again, this is just what I felt.
2. The story that the nurse tells Bill Ray about her brothers seemed very heartfelt. What brought me to tears was her telling him that as her second brother got sicker and sicker, she was able to understand and realize that he might die. And I immediately thought about my daughter, Sophie. She is so close to her baby brother and loves him so much. She ism protective (like most big sisters of brothers), but she's also so aware that something is different with his "sixty five roses". I can't bear to imagine what pain she may feel someday if...
I don't even want to write it.
Anyway, those are my thoughts. Take them with a grain of salt. Congratulations with the show. It's nice that there is still programming out there that the whole family can watch together, and with quality writing, too.
S
*******************
Finishing off this posting, it's strange because I can be cynical when I watch TV, and there were moments when I was watching the opening of this episode I was like, "Oh, this is so...." Don't get me wrong; I really DO like the show. It's just easy to pick on a series that is trying to be wholesome (like the PAX network promotes). Anyway, my point is, and Julie said the same thing, that the moment Billy Ray Cyrus reveals that this teenage girl has CF my heart broke. Julie said she wanted to cry. We knew what the plot was, but it didn't matter. I guess it's probably hard for some people to understand unless they've been faced with a similar situation in their lives.
There is a song in the show sung by country singer Tammy Cochran called "Angels in Waiting". In the episode of Doc, Tammy plays the nurse who lost her brothers to CF. I guess in reality, Tammy also lost brothers to CF. The song is heartbreaking.
S
**************
Joan,
We received your donation and the DOC tape yesterday. Thank you so much for helping out.
Julie and I watched the episode you sent last night and I thought it was very good. I like this show. I wish I watched it more. Nice job on the script, too. I like how all of the story lines had a connection. The teacher who suffered a great loss in her life ties in with the nurse and the loss she felt. The theme of parenthood between the nurse and the lawyer related to how the cop and his wife handled their son's predicament. And of course, all of this, loss and parenthood tied into the girl with CF, who has lost both parents and must now face her own mortality.
It must have been tough trying to explain so much CF info in an hour program, and still stay within the confines of your structured series. "7th Heaven" did an episode about CF this year, too. One of the leads has a stepsister with CF and they featured said sister as the character on the show with CF. I’ll be honest, I liked the way DOC did their show better.
(On a side note, the only reason I even watch "7th Heaven" is because the lead from my movie had a reoccurring role the past two seasons).
There were two things that really struck me about the episode, being a parent with a child who has CF.
1. I felt that the girl was a little old just now learn she had CF. Although I've heard of varying cases of the disease, for as sick as she was supposed to be. And actually, she didn't seem that sick to me to have pneumonia. I realize this is nitpicking (and I really liked the young actresses performance, otherwise). Again, this is just what I felt.
2. The story that the nurse tells Bill Ray about her brothers seemed very heartfelt. What brought me to tears was her telling him that as her second brother got sicker and sicker, she was able to understand and realize that he might die. And I immediately thought about my daughter, Sophie. She is so close to her baby brother and loves him so much. She ism protective (like most big sisters of brothers), but she's also so aware that something is different with his "sixty five roses". I can't bear to imagine what pain she may feel someday if...
I don't even want to write it.
Anyway, those are my thoughts. Take them with a grain of salt. Congratulations with the show. It's nice that there is still programming out there that the whole family can watch together, and with quality writing, too.
S
*******************
Finishing off this posting, it's strange because I can be cynical when I watch TV, and there were moments when I was watching the opening of this episode I was like, "Oh, this is so...." Don't get me wrong; I really DO like the show. It's just easy to pick on a series that is trying to be wholesome (like the PAX network promotes). Anyway, my point is, and Julie said the same thing, that the moment Billy Ray Cyrus reveals that this teenage girl has CF my heart broke. Julie said she wanted to cry. We knew what the plot was, but it didn't matter. I guess it's probably hard for some people to understand unless they've been faced with a similar situation in their lives.
There is a song in the show sung by country singer Tammy Cochran called "Angels in Waiting". In the episode of Doc, Tammy plays the nurse who lost her brothers to CF. I guess in reality, Tammy also lost brothers to CF. The song is heartbreaking.
S
Monday, August 11, 2003
The weekends seem to be the most difficult time to sit down and write. The whole day kind revolves around spending time with the kids and doing whatever housework needs to get done. The nighttime is generally the only time Jules and I get to spend together. However, since I'm working on this script, we didn't even get to do that.
On Saturday we ran 5 miles as a team. Beth, the latest edition to the CF team, ran with Rebecca and me. She completed a half marathon a couple of weeks ago, so she's got a little more experience than me. She sets a good pace, so I think it will be good to run with her. We had to run up this gnarly hill... treacherous is more like it. Besides going straight up, I thought the thing was completely unsafe to run down. There were so many rocks (BIG rocks) that one slip could have meant stitches.
Listen to me, complaining like a big baby.
The run walk method is really working out. Those five miles we ran on Saturday were easier than any of the 5 mile runs I've done on my own. My legs didn't feel like they were about to melt and I wasn't completely wasted after the run. This is a good thing.
The rest of the weekend was spent doing some much needed shopping (I finally got some new running attire), going out to eat at BJ's (which is a supporter of CF. If you've never been there, the food is AWESOME... the beer ain't too bad either), and taking in a freed Canned Heat concert at the park.
You know, Canned Heat. I'm not the only one who has heard of them, am I. "On the road again"... "Up to the country"... Man, I feel old, and I wasn't even alive during Woodstock.
Yesterday's sermon at church was inspiring. I was moved to tears. Pastor Stan discussed how we are all given gifts and we should use these gifts to better the world. Sounds very simple, but when you show clips from "Dumbo", man, you're tugging on the heartstrings. I couldn't help thinking about Jake and what he may have to offer down the line. And I couldn't help thinking that I should be writing about something more important than a Mexican ghost haunting a college student.
This "El Charro" script has been an ordeal for me. I feel so uninspired, and when I finally sit down to write, I feel like the biggest hack on earth. This could be the worst thing I've ever written. I don't feel proud about that. I take pride in my writing, even if it's genre material. I just feel like I haven't had enough time.
I've been so impatient lately. I'd like to think it's from being tired from the marathon training, but more likely it's the weight of completing this script. Subconsciously, it's wearing me out.
But, I'll be done in a couple of days... and then the Boss comes to town on Sunday.
On Saturday we ran 5 miles as a team. Beth, the latest edition to the CF team, ran with Rebecca and me. She completed a half marathon a couple of weeks ago, so she's got a little more experience than me. She sets a good pace, so I think it will be good to run with her. We had to run up this gnarly hill... treacherous is more like it. Besides going straight up, I thought the thing was completely unsafe to run down. There were so many rocks (BIG rocks) that one slip could have meant stitches.
Listen to me, complaining like a big baby.
The run walk method is really working out. Those five miles we ran on Saturday were easier than any of the 5 mile runs I've done on my own. My legs didn't feel like they were about to melt and I wasn't completely wasted after the run. This is a good thing.
The rest of the weekend was spent doing some much needed shopping (I finally got some new running attire), going out to eat at BJ's (which is a supporter of CF. If you've never been there, the food is AWESOME... the beer ain't too bad either), and taking in a freed Canned Heat concert at the park.
You know, Canned Heat. I'm not the only one who has heard of them, am I. "On the road again"... "Up to the country"... Man, I feel old, and I wasn't even alive during Woodstock.
Yesterday's sermon at church was inspiring. I was moved to tears. Pastor Stan discussed how we are all given gifts and we should use these gifts to better the world. Sounds very simple, but when you show clips from "Dumbo", man, you're tugging on the heartstrings. I couldn't help thinking about Jake and what he may have to offer down the line. And I couldn't help thinking that I should be writing about something more important than a Mexican ghost haunting a college student.
This "El Charro" script has been an ordeal for me. I feel so uninspired, and when I finally sit down to write, I feel like the biggest hack on earth. This could be the worst thing I've ever written. I don't feel proud about that. I take pride in my writing, even if it's genre material. I just feel like I haven't had enough time.
I've been so impatient lately. I'd like to think it's from being tired from the marathon training, but more likely it's the weight of completing this script. Subconsciously, it's wearing me out.
But, I'll be done in a couple of days... and then the Boss comes to town on Sunday.
Friday, August 08, 2003
I want to take some time to talk about my daughter, Sophie. With this marathon and all of the information about CF and my feelings being laid out, I wanted to make sure that my wonderful little daughter isn’t EVER forgotten.
Sophie has been so wonderful with Jacob and she really shows so much compassion for what he’s going through. I often worry that she may think we’re paying special attention to Jacob when we’re not dealing with the CF related issues.
Sophie had her own little scare when she was born. In fact, she stopped breathing the night she was born and spent 10 days in the ICU. In a strange sort of way, our experiences with Sophie’s birth actually prepared me mentally for when Jacob was in the ICU. When she came home from the hospital, she had to wear a breathing monitor that wrapped around her chest. An alarm would go off every time she breathed irregularly. It was a really distressful time for us. Every time that alarm sounded, you thought you think your child has stopped breathing.
Needless to say, there turned out to be nothing wrong with her. She’s as healthy as they come. Sometimes a little shy, I’m always impressed with how much information she takes in (and how much she tunes me out when Rugrats, or, lately, Spongebob, are on the TV).
I think her greatest attribute is that she is so caring for everyone’s feelings. She's so protective of her friends; of Julie and me if we’re arguing; and especially of Jacob. For a four year old little girl to have to grasp that her brother is not like other kids and that he’s going to have to receive special attention all of the time, that’s a lot to ask. But she has been great and really watches out for Jake.
The first night we got the Vest, Jake cried when we put it on him. Jules and I understood that it wouldn’t hurt him, but Sophie is too young to grasp that. In a stern, commanding voice, she said, “Just take it off him. He doesn’t like it.”
If she could, I know Sophie would take this disease out of Jacob’s body. She’s asked Julie a couple of times, “When is Jacob going to get to stop doing breathing treatments?” and “I wish Jacob didn’t have to take medicine all the time.” How do you respond to something like that without tearing up?
I read a pretty well known book about CF last year that I thought was very well done. I won’t name it because it’s a helpful book to so many people. Julie loved it. In it, a family of four deals with their youngest child having CF. I enjoyed the book and found myself saying “A-ha… I’m just like that”. Yet, halfway through the book, I started to notice that the oldest child was suddenly not spoken about and her accomplishments were never mentioned until the end. I was pissed.
Look, I know that the book was about the youngest child with CF. But we’re talking about a family of four. I couldn’t finish the book because I felt like there was a voice missing in this story. The voice of that oldest child.
In the Malchus family, Sophie’s voice is as important as anyone else’s. We try to include her everything and have her help out with the breathing treatments so that she’ll better understand what Jacob’s going through. I just don’t want her to feel like she’s ever forgotten. I love her so much.
***************
Rode the bike today and took the DeCoro (sp.) hill near Vill’s house. It’s like a 1/4 mile up, and then straight down (really scary coming down, I wore my brakes out). I’m looking forward to tomorrow’s group training.
Finally: This week's CD’s in the player….
Jayhawks “Rainy Day Music” (Love that album)
Wilco “Yankee Hotel Foxtrot” (Haunting and beautiful)
Springsteen: I’ll go with “The River” only because I finally learned the lyrics to “Sherry Darling”, “Cadillac Ranch” and “Ramrod”.
Men At Work "Essential Collection" (Again? Hey, at least I’m not listening to that 7 CD 80’s box set I bought…. wait, did I just admit I own that?)
Just so you all know, I put a moratorium on buying any new CD’s (effective August 1st) until after the Marathon. Trying to make the sacrifice and save some money for the trip (ooooh, big sacrifice, Scott).
That’s all.
S
Sophie has been so wonderful with Jacob and she really shows so much compassion for what he’s going through. I often worry that she may think we’re paying special attention to Jacob when we’re not dealing with the CF related issues.
Sophie had her own little scare when she was born. In fact, she stopped breathing the night she was born and spent 10 days in the ICU. In a strange sort of way, our experiences with Sophie’s birth actually prepared me mentally for when Jacob was in the ICU. When she came home from the hospital, she had to wear a breathing monitor that wrapped around her chest. An alarm would go off every time she breathed irregularly. It was a really distressful time for us. Every time that alarm sounded, you thought you think your child has stopped breathing.
Needless to say, there turned out to be nothing wrong with her. She’s as healthy as they come. Sometimes a little shy, I’m always impressed with how much information she takes in (and how much she tunes me out when Rugrats, or, lately, Spongebob, are on the TV).
I think her greatest attribute is that she is so caring for everyone’s feelings. She's so protective of her friends; of Julie and me if we’re arguing; and especially of Jacob. For a four year old little girl to have to grasp that her brother is not like other kids and that he’s going to have to receive special attention all of the time, that’s a lot to ask. But she has been great and really watches out for Jake.
The first night we got the Vest, Jake cried when we put it on him. Jules and I understood that it wouldn’t hurt him, but Sophie is too young to grasp that. In a stern, commanding voice, she said, “Just take it off him. He doesn’t like it.”
If she could, I know Sophie would take this disease out of Jacob’s body. She’s asked Julie a couple of times, “When is Jacob going to get to stop doing breathing treatments?” and “I wish Jacob didn’t have to take medicine all the time.” How do you respond to something like that without tearing up?
I read a pretty well known book about CF last year that I thought was very well done. I won’t name it because it’s a helpful book to so many people. Julie loved it. In it, a family of four deals with their youngest child having CF. I enjoyed the book and found myself saying “A-ha… I’m just like that”. Yet, halfway through the book, I started to notice that the oldest child was suddenly not spoken about and her accomplishments were never mentioned until the end. I was pissed.
Look, I know that the book was about the youngest child with CF. But we’re talking about a family of four. I couldn’t finish the book because I felt like there was a voice missing in this story. The voice of that oldest child.
In the Malchus family, Sophie’s voice is as important as anyone else’s. We try to include her everything and have her help out with the breathing treatments so that she’ll better understand what Jacob’s going through. I just don’t want her to feel like she’s ever forgotten. I love her so much.
***************
Rode the bike today and took the DeCoro (sp.) hill near Vill’s house. It’s like a 1/4 mile up, and then straight down (really scary coming down, I wore my brakes out). I’m looking forward to tomorrow’s group training.
Finally: This week's CD’s in the player….
Jayhawks “Rainy Day Music” (Love that album)
Wilco “Yankee Hotel Foxtrot” (Haunting and beautiful)
Springsteen: I’ll go with “The River” only because I finally learned the lyrics to “Sherry Darling”, “Cadillac Ranch” and “Ramrod”.
Men At Work "Essential Collection" (Again? Hey, at least I’m not listening to that 7 CD 80’s box set I bought…. wait, did I just admit I own that?)
Just so you all know, I put a moratorium on buying any new CD’s (effective August 1st) until after the Marathon. Trying to make the sacrifice and save some money for the trip (ooooh, big sacrifice, Scott).
That’s all.
S
Thursday, August 07, 2003
A respiratory therapist stopped by the house tonight to go over the Vest with us. It was very helpful and I think we have a better understanding of how it works and what we’re supposed to do if the thing ever breaks down. Although the kids were running around screaming, wound up from a late afternoon nap, Jules was able to focus on what the woman was telling us.
I just want to say that I am so lucky to have such a wonderful woman for a wife. Not only is she a wonderful mother and a loving wife, but also she's so on top of things when it comes to all of the medicines and Jacob’s treatments. On top of that, she’s very sensitive to Sophie’s feelings and trying to include her.
This may come off sounding strange since we’ve been married for 9 ½ years, but I am still amazed at times that someone like Julie is actually in love with me. And I find myself stepping back at times and going, “wow, I can’t believe she just said that, or did that.”
The other day we were discussing the trip to Hawaii for the marathon. It’s going to be expensive and we’re not sure where we’re going to come up with the money. For a brief moment, I thought to myself, “I guess I may have to go alone”. And it was as if she knew those words were traveling down the brain pipe to my mouth.
“I can’t imagine you being there and not having someone there to cheer for you as you cross the finish line.”
Those simple words may seem like the obvious thing to say, but Julie is so sincere, it’s not like she said them because she felt like she HAD to say them. These were her true feelings. After ten years, she still says things that blow me away. She still shows me every day, despite my shortcomings as a father, as a husband… as a man; she still shows me that she loves me as much, if not more, as the day we married.
We have had a rough couple of years since Jacob was diagnosed. We have weathered each and ever storm together with our hands held tight and our hearts together. I don’t know how I could have survived these last two years… or the last ten, without Julie.
I really am a lucky man.
I just want to say that I am so lucky to have such a wonderful woman for a wife. Not only is she a wonderful mother and a loving wife, but also she's so on top of things when it comes to all of the medicines and Jacob’s treatments. On top of that, she’s very sensitive to Sophie’s feelings and trying to include her.
This may come off sounding strange since we’ve been married for 9 ½ years, but I am still amazed at times that someone like Julie is actually in love with me. And I find myself stepping back at times and going, “wow, I can’t believe she just said that, or did that.”
The other day we were discussing the trip to Hawaii for the marathon. It’s going to be expensive and we’re not sure where we’re going to come up with the money. For a brief moment, I thought to myself, “I guess I may have to go alone”. And it was as if she knew those words were traveling down the brain pipe to my mouth.
“I can’t imagine you being there and not having someone there to cheer for you as you cross the finish line.”
Those simple words may seem like the obvious thing to say, but Julie is so sincere, it’s not like she said them because she felt like she HAD to say them. These were her true feelings. After ten years, she still says things that blow me away. She still shows me every day, despite my shortcomings as a father, as a husband… as a man; she still shows me that she loves me as much, if not more, as the day we married.
We have had a rough couple of years since Jacob was diagnosed. We have weathered each and ever storm together with our hands held tight and our hearts together. I don’t know how I could have survived these last two years… or the last ten, without Julie.
I really am a lucky man.
Sorry about that little outburst. It will interesting to count how many times I write "I hate this fucking disease" before I'm done with the Marathon. Let's make it a game, shall we? The winner receives a free copy of KING'S HIGHWAY.
I have now watched Spike Jonze and Charles Kaufman's "Adaptation" one and a half times. The thing about Spike Jonze (and he's only directed 2 features) is that he is able to tap into the sadness of every day life and still instill hope. I found myself very moved by Adaptation (and parts of "Being John Malkovich" as well). I am eager to see what he does next. I have no doubt it will be wonderful and intelligent.
I think that's what's troubling me right now about doing this script for Ryan (Johnson...producer of KH); I want to do something with meaning. I want to do something with heart. It's difficult to pull that off in any writing, let alone something I'm trying to get done in 2 weeks.
In my heart, I have so many stories to tell. I wonder if I'll have the opportunity to write them.
S
I have now watched Spike Jonze and Charles Kaufman's "Adaptation" one and a half times. The thing about Spike Jonze (and he's only directed 2 features) is that he is able to tap into the sadness of every day life and still instill hope. I found myself very moved by Adaptation (and parts of "Being John Malkovich" as well). I am eager to see what he does next. I have no doubt it will be wonderful and intelligent.
I think that's what's troubling me right now about doing this script for Ryan (Johnson...producer of KH); I want to do something with meaning. I want to do something with heart. It's difficult to pull that off in any writing, let alone something I'm trying to get done in 2 weeks.
In my heart, I have so many stories to tell. I wonder if I'll have the opportunity to write them.
S
Didn't run this morning. I was so exhausted from trying to write the script and running early in the morning. Something had to give. Unfortunately, I have to complete the script by next week; I have 20 more weeks of running to recover form this morning.
(Editors note. My grammar is terrible. My last true grammar teacher was Jan Denman, my 12th Grade AP English teacher. I dread the day he may look at this web log, I also rely on Steve, my closest friend outside of Julie. I dread the day he looks at this site too).
Anyway.....
Last night Jake did his first treatment with the Vest. We haven't been formally "trained" on it yet (that happens tonight), but we watched the informative VHS tape that came with it. We're supposed to work our way up to Jake wearing it 20 minutes/ twice a day. Well the champ did a 15 minute treatment last night.
Jules was teary eyed when she went to bed last night. There were moments during the treatment when he would look back at her, frightened, and just say (with pleading eyes) "Momma?"
I hate this fucking disease.
(Editors note. My grammar is terrible. My last true grammar teacher was Jan Denman, my 12th Grade AP English teacher. I dread the day he may look at this web log, I also rely on Steve, my closest friend outside of Julie. I dread the day he looks at this site too).
Anyway.....
Last night Jake did his first treatment with the Vest. We haven't been formally "trained" on it yet (that happens tonight), but we watched the informative VHS tape that came with it. We're supposed to work our way up to Jake wearing it 20 minutes/ twice a day. Well the champ did a 15 minute treatment last night.
Jules was teary eyed when she went to bed last night. There were moments during the treatment when he would look back at her, frightened, and just say (with pleading eyes) "Momma?"
I hate this fucking disease.
Wednesday, August 06, 2003
Yesterday was hell. And I didn't even run.
Long day at work and Julie had her first, of many I'm sure, battles with the insurance company. We received a wonderful bill from the hospital of which we'll be expected to pay 80%. But most importantly, we received Jacob's Vest.
The Vest is this remarkable device that CF patients use for their PT (Percussive Treatments). It plugs in to the wall and then uses air pressure to pound on the person's chest and back. As the name indicates, it slips over their head like a vest.
We learned last week that Jake would be receiving it. That news was kind of... strange. And when we had it in our homes... well, it was another one of those moments inwhich I felt overwhelmed by the weight of this disease.
You see, it's like you have these moments when you kind of forget that there's anything wrong with your child. At least, I have those moments. Generally it happens during family events when I'm watching Jake play with the other kids. He seems so.... normal. And then, as if just thinking he's "normal", a shot rings out and I say to myself "but he's not normal. He has CF."
At home, it's easier to place the CF in the back of my mind. We've adapted to the disease; his meds and breathing treatments have become part of our daily life. So the arrival of this new machine into our home might as well as been a boulder falling through the roof.
"Hey, look what just dropped in."
It's kind of like Pacino in "Godfather 3"... "Just when I think I'm getting out, something always pulls me back in". Just when you think you have a handle on this f'n disease and taking back the reigns, something new drops in.
FUNDRAISING UPDATE:
We're making good progress. We've broken the $1K mark and some of the heavy guns haven't even weighed in yet. I'm feeling really confident about reaching my goal.
Today I ran four miles in forty minutes using the run/walk method. I pushed myself a little harder today and it felt great, though, I have a long way to go if I think I can run at that pace for 26 miles.
Forgot my MP3 player at work again, so tomorrow I'm stuck with the same songs. My God, if I have to hear Pete Yorn's "Murray" one more time I may vomit (for those of you who don't own Yorn's debut album "musicforthemorningafter", go get it).
Today has been a better day. This script I'm working on is killing me, though. Not getting enough sleep. Springsteen is less than 2 weeks away and I love that Jayhawks album. Take care.
S
Long day at work and Julie had her first, of many I'm sure, battles with the insurance company. We received a wonderful bill from the hospital of which we'll be expected to pay 80%. But most importantly, we received Jacob's Vest.
The Vest is this remarkable device that CF patients use for their PT (Percussive Treatments). It plugs in to the wall and then uses air pressure to pound on the person's chest and back. As the name indicates, it slips over their head like a vest.
We learned last week that Jake would be receiving it. That news was kind of... strange. And when we had it in our homes... well, it was another one of those moments inwhich I felt overwhelmed by the weight of this disease.
You see, it's like you have these moments when you kind of forget that there's anything wrong with your child. At least, I have those moments. Generally it happens during family events when I'm watching Jake play with the other kids. He seems so.... normal. And then, as if just thinking he's "normal", a shot rings out and I say to myself "but he's not normal. He has CF."
At home, it's easier to place the CF in the back of my mind. We've adapted to the disease; his meds and breathing treatments have become part of our daily life. So the arrival of this new machine into our home might as well as been a boulder falling through the roof.
"Hey, look what just dropped in."
It's kind of like Pacino in "Godfather 3"... "Just when I think I'm getting out, something always pulls me back in". Just when you think you have a handle on this f'n disease and taking back the reigns, something new drops in.
FUNDRAISING UPDATE:
We're making good progress. We've broken the $1K mark and some of the heavy guns haven't even weighed in yet. I'm feeling really confident about reaching my goal.
Today I ran four miles in forty minutes using the run/walk method. I pushed myself a little harder today and it felt great, though, I have a long way to go if I think I can run at that pace for 26 miles.
Forgot my MP3 player at work again, so tomorrow I'm stuck with the same songs. My God, if I have to hear Pete Yorn's "Murray" one more time I may vomit (for those of you who don't own Yorn's debut album "musicforthemorningafter", go get it).
Today has been a better day. This script I'm working on is killing me, though. Not getting enough sleep. Springsteen is less than 2 weeks away and I love that Jayhawks album. Take care.
S
Monday, August 04, 2003
Last Friday was the 11th Anniversary of my first date with Julie. I like having this alternate anniversary since it was on that first date that I knew I was going to marry her.
Our first date was a movie, "Unlawful Entry" starring Kurt Russell, Madeline Stowe and Ray Liotta. It's ironic that our first date ws this type of tense thriller because Julie hates these kind of movies (our second movie together was "Unforgiven", that's two violent gems in a row). After the film, we stopped at Arturos where we had a couple of beers and I had some wings. Then we went to some dive bar located next to the North Olmsted water tower where we drank and talked for a long time.
For some reason she drove that night (her VW Fox, which we owned until 1999, when it died in the middle of an intesection with Sophie in the backseat... one of the worst mornings of my life), and she took me home after all of our drinks. We talked a little more and then I asked her if I could kiss her. I hadn't done that in a LOOONG time.
That kiss was perfect.
I walked on air into the house and my sister, Heidi, could immediately tell that something was up. "I think I just went out with the girl I'm going to marry." And with that, I left Heidi stymied and went to bed.
It took me a month to come to terms with the feelings I was having. I'd just come out of a 2 year relationship that ended REALLY BADLY, so the notion that I could be in love so soon was disorienting. But something inside told me it was okay, that the feelings were true and that she was my soul mate. And when I told her that I was in love with her and wanted to spend the rest of my life with her... she told me the same.
Pretty cool, huh?
Ran 30 minutes this morning, about 3 miles. Starting to get used to waking up so early. I actually woke up at 5, wide awake. Scary.
The run was uneventful, down Newhall to McBean and back. My body is starting to get used to the run/walk method and I'm going to attempt to push myself a little harder on Wednesday (my next scheduled run day). I haven't started doing the yoga yet, but I really want to start. I think it will help me relax when running. I also need to change the tunes in my MP3 player. I've heard them all one too many times (except the Springsteen).
S
Our first date was a movie, "Unlawful Entry" starring Kurt Russell, Madeline Stowe and Ray Liotta. It's ironic that our first date ws this type of tense thriller because Julie hates these kind of movies (our second movie together was "Unforgiven", that's two violent gems in a row). After the film, we stopped at Arturos where we had a couple of beers and I had some wings. Then we went to some dive bar located next to the North Olmsted water tower where we drank and talked for a long time.
For some reason she drove that night (her VW Fox, which we owned until 1999, when it died in the middle of an intesection with Sophie in the backseat... one of the worst mornings of my life), and she took me home after all of our drinks. We talked a little more and then I asked her if I could kiss her. I hadn't done that in a LOOONG time.
That kiss was perfect.
I walked on air into the house and my sister, Heidi, could immediately tell that something was up. "I think I just went out with the girl I'm going to marry." And with that, I left Heidi stymied and went to bed.
It took me a month to come to terms with the feelings I was having. I'd just come out of a 2 year relationship that ended REALLY BADLY, so the notion that I could be in love so soon was disorienting. But something inside told me it was okay, that the feelings were true and that she was my soul mate. And when I told her that I was in love with her and wanted to spend the rest of my life with her... she told me the same.
Pretty cool, huh?
Ran 30 minutes this morning, about 3 miles. Starting to get used to waking up so early. I actually woke up at 5, wide awake. Scary.
The run was uneventful, down Newhall to McBean and back. My body is starting to get used to the run/walk method and I'm going to attempt to push myself a little harder on Wednesday (my next scheduled run day). I haven't started doing the yoga yet, but I really want to start. I think it will help me relax when running. I also need to change the tunes in my MP3 player. I've heard them all one too many times (except the Springsteen).
S
Sunday, August 03, 2003
It's Sunday night and I'm writing from home. We drove up to Santa Barbara yesterday and spent the night. It was awesome. I'm really glad we decided to do it as we rarely take a vacation just the four of us. It was just nice to get away, even if it was for 2 days.
While in Santa Barbara, we went to the beach, then walked around downtown where they were having a Spanish Heritage Festival. The streets were packed. Then we adjorned to our overpriced motel and pretty much crashed early. This morning we went out to breakfast at IHOP, yes, The International House of Pancakes. We finished our trip off by visiting the zoo for a couple of hours. I like the Santa Barbara zoo because you get really close to the animals. The kids had a great time. After the zoo, we hit the road. It's only an hour and a half drive, so it wasn't bad at all.
The Marathon Training group met again yesterday morning. Robert Mills is our instructor and he's really inspiring. I've only been to the training twice, but both sessions have leftme feeling inspired and truly capable of completing the marathon. We ran 4 miles. It wasn't difficult. I ran with Rebecca, the woman I know from The Cystic Fibrosis Foundation. One of the things we talked about while running was designing hats for the marathon. I'm going to call Cousin Dave and see if he can help out.
That's all for now. It's late and I have to get up at 5:30 to go running. Plus, I have to start writing a screenplay tomorrow. It has to be complete in 2 weeks, but I'm supposed to get paid this time. We'll see.
S
While in Santa Barbara, we went to the beach, then walked around downtown where they were having a Spanish Heritage Festival. The streets were packed. Then we adjorned to our overpriced motel and pretty much crashed early. This morning we went out to breakfast at IHOP, yes, The International House of Pancakes. We finished our trip off by visiting the zoo for a couple of hours. I like the Santa Barbara zoo because you get really close to the animals. The kids had a great time. After the zoo, we hit the road. It's only an hour and a half drive, so it wasn't bad at all.
The Marathon Training group met again yesterday morning. Robert Mills is our instructor and he's really inspiring. I've only been to the training twice, but both sessions have leftme feeling inspired and truly capable of completing the marathon. We ran 4 miles. It wasn't difficult. I ran with Rebecca, the woman I know from The Cystic Fibrosis Foundation. One of the things we talked about while running was designing hats for the marathon. I'm going to call Cousin Dave and see if he can help out.
That's all for now. It's late and I have to get up at 5:30 to go running. Plus, I have to start writing a screenplay tomorrow. It has to be complete in 2 weeks, but I'm supposed to get paid this time. We'll see.
S
Friday, August 01, 2003
Didn't write yesterday. I was working on getting a package together for the Sundance Film Festival. Trying to keep a low key approach to entering KING'S HIGHWAY into festivals. In particular, the Sundance Festival. I really don't think the movie will get accepted, but there's that little piece of me that's holding out some hope.
For those of you unfamiliar with KING'S HIGHWAY (KH), it's a feature length movie I wrote and directed. It stars Geoff Stults, who has appeared on "7th Heaven" and "Dragnet", Lori Heuring, who starred in a popular thriller called "The In-Crowd" and appeared in David Lynch's "Mulholland Dr.", Ryan Alosio, who was in "The Hi-Line" opposite Rachel Leigh Cook (remember her?) and a funny guy named John DiResta, who was in "Miss Congeniality", "15 Minutes" (opposite De Niro) and has his own series on FX premiering tonight called "Trash for Cash".
We shot the bulk of the movie in 9 days back in May 2001. We had $3000.00 and killed ourselves in that week. It wouldn't have been such a big deal if, say, we were making a movie that takes place in one or two settings and had a few characters. But this is a ROAD trip movie! With Vespa scooters, my parents camper van and a boot car.
Anyway, it took us 2 years to finish the thing. Our actors were out of town when we needed to do pickups, so we had to wait. Our sound guy didn't label anything or call out our shots, so I had to listen to every take while watching the footage and log everything. That took three weeks. Jules and I bought our house and moved. We decided to edit a trailer for KH, which we had to do when our editor was available, so that took about a month (oh, and that trailer was pretty much abandoned after it was completed). Then our editor had to back out, so Villamor (Cruz) had to teach himself Final Cut Pro. And then Jacob was born.
The whole production kind of shut down when Jake was diagnosed. For obvious reasons, I didn't focus on the movie.
2002 was spent editing and doing the sound. Blah blah Blah. If you want to see the final movie, let me know.
My point was that I didn't write yesterday. I got up at 5:30 and ran for forty minutes (approximately 4 miles). I was DEAD by the end of the day, to say the least. Almost didn't have the energy to let the cats in. Today, I rode my bike for about an hour.
I'm having trouble concentrating when I'm out there. I get so stressed about things, it makes it difficult to relax and just exercise.
This entry isn't making much sense, so I'll leave off with a list of the albums in the CD player this past week:
Spingsteen, "Born to Run"
Young Dubliners, "Red"
Men at Work, "Essential Collection" (I'm a glutton for 80's new wave)
Jayhawks, "Rainy Day Music"
I've also added a link to "Radio Paradise", an awesome internet radio station I listen to all of the time.
For those of you unfamiliar with KING'S HIGHWAY (KH), it's a feature length movie I wrote and directed. It stars Geoff Stults, who has appeared on "7th Heaven" and "Dragnet", Lori Heuring, who starred in a popular thriller called "The In-Crowd" and appeared in David Lynch's "Mulholland Dr.", Ryan Alosio, who was in "The Hi-Line" opposite Rachel Leigh Cook (remember her?) and a funny guy named John DiResta, who was in "Miss Congeniality", "15 Minutes" (opposite De Niro) and has his own series on FX premiering tonight called "Trash for Cash".
We shot the bulk of the movie in 9 days back in May 2001. We had $3000.00 and killed ourselves in that week. It wouldn't have been such a big deal if, say, we were making a movie that takes place in one or two settings and had a few characters. But this is a ROAD trip movie! With Vespa scooters, my parents camper van and a boot car.
Anyway, it took us 2 years to finish the thing. Our actors were out of town when we needed to do pickups, so we had to wait. Our sound guy didn't label anything or call out our shots, so I had to listen to every take while watching the footage and log everything. That took three weeks. Jules and I bought our house and moved. We decided to edit a trailer for KH, which we had to do when our editor was available, so that took about a month (oh, and that trailer was pretty much abandoned after it was completed). Then our editor had to back out, so Villamor (Cruz) had to teach himself Final Cut Pro. And then Jacob was born.
The whole production kind of shut down when Jake was diagnosed. For obvious reasons, I didn't focus on the movie.
2002 was spent editing and doing the sound. Blah blah Blah. If you want to see the final movie, let me know.
My point was that I didn't write yesterday. I got up at 5:30 and ran for forty minutes (approximately 4 miles). I was DEAD by the end of the day, to say the least. Almost didn't have the energy to let the cats in. Today, I rode my bike for about an hour.
I'm having trouble concentrating when I'm out there. I get so stressed about things, it makes it difficult to relax and just exercise.
This entry isn't making much sense, so I'll leave off with a list of the albums in the CD player this past week:
Spingsteen, "Born to Run"
Young Dubliners, "Red"
Men at Work, "Essential Collection" (I'm a glutton for 80's new wave)
Jayhawks, "Rainy Day Music"
I've also added a link to "Radio Paradise", an awesome internet radio station I listen to all of the time.
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