I was listening to the radio this morning and the commentators were broadcasting from Columbus, Ohio. They were speaking to John Glenn as he drove from Cleveland back to Columbus. And at that moment, I was in Ohio, in a car driving down 71. I could feel the hot sun through the windshield that made me want to take off my coat, and maybe open the window a crack, but not too much because there was already a frigid chill in the air. I could see the gold and red leaves along the highway and the brick buildings that were built up on either side of the roads. And there weren’t a lot of cars. It was normal traffic. You drive 65 miles per hour and you get somewhere. The time it takes to get from Cleveland to Columbus is, sometimes, the same amount of time it takes me to drive the 30 miles it takes to get to work.
This sudden wave of feelings stopped me in my tracks. I was there. I wanted to be there.
For about five minutes I thought, this is a sign. Should we move back to Ohio?
Now I sit in my office, and I’m struggling to find meaning in what I’m doing. What am I doing with my life? Does everyone go through this torment? Am I being too dramatic?
Have to put these thoughts out of my head. I know what I’m doing with my life. And the most important job at hand is being a good father and trying to set a good example for those kids.
Anyone who is interested, there is a new pic on the donation site of the kids and me. Julie and I both have wanted a new picture for a while. I don’t like singling out Jake in our battle against CF. It’s a family fight. One we will win together.
Aloha
Thursday, October 07, 2004
Tuesday, October 05, 2004
Every time I help put Sophie to bed (she likes us to sniggle her for 5 minutes), she and I go over all of the things she did at kindergarten that day. I didn't realize how much I enjoy this part of our day until tonight. We had just finished watching the Vice Presidential debate and it was time for bed. Soph and I cuddled in her bed and I thought she would go right to sleep. While laying there in silence, I suddenly felt like something was missing. I wanted to hear what she did that day.
I say that like I'm surprised because there are times when I feel like I'm the world's biggest crank and I have no patience. But at these times with Sophie, I really love hearing how much she is learning and how she is interacting with her classmates. I am so proud of our little girl. She has really embraced school and is doing excellent in her class work. We’re so lucky to have Sophie in our lives. You couldn't ask for a more loving daughter. And she's such a kind big sister it brings tears to my eyes when I see her playing with Jake.
See, that's one of the reasons I do this fundraiser. Those two. I want them to have a long, long future together. I want them to love and hate each other, to get along and fight. Basically, I want them to have the same wonderful relationship that Julie and I have both had with our siblings. This is what I pray for at night. Besides a cure, I pray that these two will have each other to fall back on their whole lives.
So that's how the night ended. I love those kids.
Ran for 40 minutes this morning. With two weeks of 10-mile runs, I feel like I can give myself a little break until next week as I gear up for the 18 mile run.
Aloha
I say that like I'm surprised because there are times when I feel like I'm the world's biggest crank and I have no patience. But at these times with Sophie, I really love hearing how much she is learning and how she is interacting with her classmates. I am so proud of our little girl. She has really embraced school and is doing excellent in her class work. We’re so lucky to have Sophie in our lives. You couldn't ask for a more loving daughter. And she's such a kind big sister it brings tears to my eyes when I see her playing with Jake.
See, that's one of the reasons I do this fundraiser. Those two. I want them to have a long, long future together. I want them to love and hate each other, to get along and fight. Basically, I want them to have the same wonderful relationship that Julie and I have both had with our siblings. This is what I pray for at night. Besides a cure, I pray that these two will have each other to fall back on their whole lives.
So that's how the night ended. I love those kids.
Ran for 40 minutes this morning. With two weeks of 10-mile runs, I feel like I can give myself a little break until next week as I gear up for the 18 mile run.
Aloha
Monday, October 04, 2004
Opted to get a little more rest this morning and I didn't ride my bike. That turned out to be the right choice as I'm ready to run tomorrow morning. The rest of the day was fine. Julie expressed concern about whether I might be able to finish the marathon. She wasn't as concerned about the physical parts as much as the mental challenges that I've been feeling this time around.
The more I think about how I performed on Saturday and the stupid way I ate and drank that day, the more I know I can complete the marathon. I just have to be smart and my body will let me do it. And I know that come that day I'll be jacked up and ready to run.
I need to stop thinking about the fundraising. I've done what I can and whatever money comes in, so be it. I know there are so many people out there that want to help and probably can't. I know those folks are sending prayers and well wishes to us for Jacob's health. In many ways, that is more important. I honestly feel that positive energy like that is a good thing and can have an effect on lives.
So, from this point on, no more complaining about the money. $4000 is a lot of money.
Julie took some great pictures yesterday, one of the kids and me will be going on the donation site and I hope to have it in a new letter I want to send out in a week or so. Those kids are so gorgeous. And they just bring a smile to your facer when you see them. They're so full of joy. I'm smiling now thinking about them.
My friend Geoff was on an NBC show tonight. He was the lead in "King's Highway." I'm glad he's starting to get a lot of exposure. Geoff is a great guy and very genuine in his feelings and concerns about other people.
Okay, that's all for now.
Aloha
P.S. I hope that all of you are registered to vote. This week is the deadline for most states.
The more I think about how I performed on Saturday and the stupid way I ate and drank that day, the more I know I can complete the marathon. I just have to be smart and my body will let me do it. And I know that come that day I'll be jacked up and ready to run.
I need to stop thinking about the fundraising. I've done what I can and whatever money comes in, so be it. I know there are so many people out there that want to help and probably can't. I know those folks are sending prayers and well wishes to us for Jacob's health. In many ways, that is more important. I honestly feel that positive energy like that is a good thing and can have an effect on lives.
So, from this point on, no more complaining about the money. $4000 is a lot of money.
Julie took some great pictures yesterday, one of the kids and me will be going on the donation site and I hope to have it in a new letter I want to send out in a week or so. Those kids are so gorgeous. And they just bring a smile to your facer when you see them. They're so full of joy. I'm smiling now thinking about them.
My friend Geoff was on an NBC show tonight. He was the lead in "King's Highway." I'm glad he's starting to get a lot of exposure. Geoff is a great guy and very genuine in his feelings and concerns about other people.
Okay, that's all for now.
Aloha
P.S. I hope that all of you are registered to vote. This week is the deadline for most states.
Sunday, October 03, 2004
The recovery from yesterday has been difficult. My legs feel like cement and my upper body aches. Let's not talk about the knee. Celery. That's what it sounds like. I'm thinking I should call my self the Rice Krispies Man. All I do is snap, crackle and pop when I walk.
I am beginning to think I should have waited to run this second marathon. Maybe I should have done it next year. Maybe never. The time commitment is so hard. And my body is wasted. I don't have the energy I want... need to spend with the kids on the weekend. I don't have the energy to be a quality husband.
At times like this, when I'm feeling drained, I feel like I should have just run the half marathon. I mean, I can practically run that in my sleep, now. And the money's not coming in.
***************
And just as I wrote the previous woe is me passage, I went out to the living room to watch some of a Discovery Health Channel show that featured two people with CF. One, a 22 year old college student at USC, the other a 42 year old woman struggling to stay healthy. Fact: Only 50% of people with CF live to be older than 32. Fact: Only 5% of CF patients live into the 40's.
5%.
I am beginning to think I should have waited to run this second marathon. Maybe I should have done it next year. Maybe never. The time commitment is so hard. And my body is wasted. I don't have the energy I want... need to spend with the kids on the weekend. I don't have the energy to be a quality husband.
At times like this, when I'm feeling drained, I feel like I should have just run the half marathon. I mean, I can practically run that in my sleep, now. And the money's not coming in.
***************
And just as I wrote the previous woe is me passage, I went out to the living room to watch some of a Discovery Health Channel show that featured two people with CF. One, a 22 year old college student at USC, the other a 42 year old woman struggling to stay healthy. Fact: Only 50% of people with CF live to be older than 32. Fact: Only 5% of CF patients live into the 40's.
5%.
Saturday, October 02, 2004
Boy, I started out great this morning. I ran alone for the entire run (except for about 20 minutes when Robert tagged along with me). Relaxed and feeling very smooth, I thought the run was going to be a breeze. I began with a 5/1, but took it relatively slow. I wasn't pushing myself to break any records. And the first 10 miles went by without a hitch. In fact, I felt strong enough to switch up to a 6/1 for the last four miles.
Then my stomach stirred up a riot and my run broke down. First there were the gas pains (reminding me of that incident last year... for those of you who've read this blog for awhile, you know what I'm talking about). I was able to get through those pains, but then I got a stitch in my left side that prevented me from running at all. The last three miles were tough. Oh, they weren't unbearable, but they took a long time and sapped all of my energy. I wound up walking the lat mile. It was a let down, for sure, but not as disappointing as that Saturday a few weeks ago.
I know that that Super Foods green concoction in a bottle that I chugged on the way to Pasadena accounted for the gas pains. That drink combined with a too full stomach gave me the cramp in my side. It was the same thing I experienced in Hawaii. The only difference was that I wanted to finish the marathon so damn bad I just kept going.
When I got home, the morning really hit me like a brick. I've been wiped out all day. Still, I feel positive about the way I ran before I had to stop running. If I am able to take the same, relaxed, slower approach come marathon time, I believe I will do much better than Hawaii. I just have to stay away from the Power bars and getting too full in the morning.
So, I guess it's back to the Almonds. Ech.
Aloha
Then my stomach stirred up a riot and my run broke down. First there were the gas pains (reminding me of that incident last year... for those of you who've read this blog for awhile, you know what I'm talking about). I was able to get through those pains, but then I got a stitch in my left side that prevented me from running at all. The last three miles were tough. Oh, they weren't unbearable, but they took a long time and sapped all of my energy. I wound up walking the lat mile. It was a let down, for sure, but not as disappointing as that Saturday a few weeks ago.
I know that that Super Foods green concoction in a bottle that I chugged on the way to Pasadena accounted for the gas pains. That drink combined with a too full stomach gave me the cramp in my side. It was the same thing I experienced in Hawaii. The only difference was that I wanted to finish the marathon so damn bad I just kept going.
When I got home, the morning really hit me like a brick. I've been wiped out all day. Still, I feel positive about the way I ran before I had to stop running. If I am able to take the same, relaxed, slower approach come marathon time, I believe I will do much better than Hawaii. I just have to stay away from the Power bars and getting too full in the morning.
So, I guess it's back to the Almonds. Ech.
Aloha
Friday, October 01, 2004
Heading into tomorrow's 16-mile run, I feel calm and relatively carefree. 16 miles? Big deal.
Of course, ask me tomorrow and it may be a different story.
Jake has been feeling better and his cold seems to be almost gone. Sophie didn't get sick at, thank goodness, so I believe our house is almost germ free. Then again, I've been feeling run down all week. Perhaps it's time to kick coffee again. With the nights getting longer and the mornings starting to chill out, I can't afford to get sick, especially as we head into the colder months.
Okay, it's decided. No coffee until the end of the marathon. Then I shall bathe in a tub of black gold, filled with cream and sugar! Now that was a little gross. So, not only will I be aching from my run, but I'm pretty sure my body is going to go through withdrawal at about, say... 3:00.
No new donations. I just did a rewrite on a script, so I'll take time to compose a new letter this weekend.
Aloha
Of course, ask me tomorrow and it may be a different story.
Jake has been feeling better and his cold seems to be almost gone. Sophie didn't get sick at, thank goodness, so I believe our house is almost germ free. Then again, I've been feeling run down all week. Perhaps it's time to kick coffee again. With the nights getting longer and the mornings starting to chill out, I can't afford to get sick, especially as we head into the colder months.
Okay, it's decided. No coffee until the end of the marathon. Then I shall bathe in a tub of black gold, filled with cream and sugar! Now that was a little gross. So, not only will I be aching from my run, but I'm pretty sure my body is going to go through withdrawal at about, say... 3:00.
No new donations. I just did a rewrite on a script, so I'll take time to compose a new letter this weekend.
Aloha
Wednesday, September 29, 2004
Switching from running three times a week to two (plus the long run) seems to be working out. I don't feel as overwhelmed and burnt out from running. The long run last week was just 10 miles and I felt strong at the end. Happy about that.
I had to get up extra early yesterday and run by 6:00 am. Pretty tough on a weekday, but it went well. I wasn't exhausted at all during the day. Heck, it was so early in the morning that I nearly forgot I ran in the morning. Still, I slept hard last night, so I know my body was in need of a rest.
I'm trying to pay close attention to what my body is telling me this time.
We have passed the $4000 mark in fundraising. I now wonder if I'll make the $10K mark this year. Jules and I are feeling fried trying to raise money all of the time. We feel an obligation to do anything we can to bring inn moola to the CF Foundation. But lately it feels like that's all we're doing. I haven't written in months, except for my fundraising letters. That would be cool, if that were all I did for a living.
Am I being selfish? I don't know. But I get the feeling that there may be some folks who feel "Hey wait, haven't I already donated once or twice this year?" Still, there are others who are as strapped as we are. $50 goes a long way in some households. There has to be other avenue other than constantly hitting up your friends and family. We just don't have those resources.
I feel like I AM being selfish. This is about Jake's life.
That's all for now.
Aloha.
I had to get up extra early yesterday and run by 6:00 am. Pretty tough on a weekday, but it went well. I wasn't exhausted at all during the day. Heck, it was so early in the morning that I nearly forgot I ran in the morning. Still, I slept hard last night, so I know my body was in need of a rest.
I'm trying to pay close attention to what my body is telling me this time.
We have passed the $4000 mark in fundraising. I now wonder if I'll make the $10K mark this year. Jules and I are feeling fried trying to raise money all of the time. We feel an obligation to do anything we can to bring inn moola to the CF Foundation. But lately it feels like that's all we're doing. I haven't written in months, except for my fundraising letters. That would be cool, if that were all I did for a living.
Am I being selfish? I don't know. But I get the feeling that there may be some folks who feel "Hey wait, haven't I already donated once or twice this year?" Still, there are others who are as strapped as we are. $50 goes a long way in some households. There has to be other avenue other than constantly hitting up your friends and family. We just don't have those resources.
I feel like I AM being selfish. This is about Jake's life.
That's all for now.
Aloha.
Friday, September 24, 2004
It's been a fairly mellow week here in Cali. I rode my bike Monday and this morning and only ran once (on Tuesday). I intended on running yesterday morning but my body said to rest and I decided to listen since we're only running 10 miles this weekend.
We went to a parent/teacher conference for Sophie this morning. What a relief it was to hear that Sophie is doing so well and that we're doing just fine with her at home helping her out with her schoolwork. To say that all of this is new would be an understatement. It's amazing how much she's learning and how quickly she is grasping the concept of reading. That little girl really enjoys learning.
It was interesting to hear her teacher talk about how much of an achiever she is. Sophie really strives to do everything the "right" way and to make sure all of her answers are correct. Part of me wonders how much of her desire to have everything in order is a response top the CF in our lives and the medical issues that come up.
I still remember when Julie was in the hospital before Jake was born (almost 3 years ago!) and how the two of us were both so stressed. She just wanted her mommy and I was just an emotional mess. I tried so hard not to project any of my fears on her (she was only almost 3), but I fear I was as successful as I'd hoped.
I look back on that strange period of our lives and I know that Sophie and I have a special bond from that time. I would drive her 20 minutes to her day care, and then pick her up at the end of my day and we'd go to the hospital to see Julie. Finally, we'd drive back home (another 30 minute drive) and crash in bed together. I honestly feel that that period of her life made her mature a little faster than should be allowed for a little girl. I think it was around that time that she really became empathetic to other people's worries and pain.
I only hope that she will continue to be open with us and tell us whenever she isn't feeling good or if she's feeling stressed. She's really into this program "Full House" now (reruns of a "sitcom" from the late 80's and 90's). I can't stand the show myself. But, obviously, I am not the intended audience. However, the one time I sat down with her to watch the show, one of the characters told one of the little Olsen twins that families never keep their feelings from each other and they always talk about how they are feeling.... or something like that. Come on, it was "Full House"... Anyway, I think she got something from that. Hopefully she'll hold on to that advice.
And, yes, I have to make sure to remind her of this, too.
That's all for now. We decide that we're going to make the trip back east for Christmas this year. Can we afford it? Bwa ha ha ha ha ha !!!!!
No.
Looking forward to tomorrow.
Aloha
We went to a parent/teacher conference for Sophie this morning. What a relief it was to hear that Sophie is doing so well and that we're doing just fine with her at home helping her out with her schoolwork. To say that all of this is new would be an understatement. It's amazing how much she's learning and how quickly she is grasping the concept of reading. That little girl really enjoys learning.
It was interesting to hear her teacher talk about how much of an achiever she is. Sophie really strives to do everything the "right" way and to make sure all of her answers are correct. Part of me wonders how much of her desire to have everything in order is a response top the CF in our lives and the medical issues that come up.
I still remember when Julie was in the hospital before Jake was born (almost 3 years ago!) and how the two of us were both so stressed. She just wanted her mommy and I was just an emotional mess. I tried so hard not to project any of my fears on her (she was only almost 3), but I fear I was as successful as I'd hoped.
I look back on that strange period of our lives and I know that Sophie and I have a special bond from that time. I would drive her 20 minutes to her day care, and then pick her up at the end of my day and we'd go to the hospital to see Julie. Finally, we'd drive back home (another 30 minute drive) and crash in bed together. I honestly feel that that period of her life made her mature a little faster than should be allowed for a little girl. I think it was around that time that she really became empathetic to other people's worries and pain.
I only hope that she will continue to be open with us and tell us whenever she isn't feeling good or if she's feeling stressed. She's really into this program "Full House" now (reruns of a "sitcom" from the late 80's and 90's). I can't stand the show myself. But, obviously, I am not the intended audience. However, the one time I sat down with her to watch the show, one of the characters told one of the little Olsen twins that families never keep their feelings from each other and they always talk about how they are feeling.... or something like that. Come on, it was "Full House"... Anyway, I think she got something from that. Hopefully she'll hold on to that advice.
And, yes, I have to make sure to remind her of this, too.
That's all for now. We decide that we're going to make the trip back east for Christmas this year. Can we afford it? Bwa ha ha ha ha ha !!!!!
No.
Looking forward to tomorrow.
Aloha
Monday, September 20, 2004
Ran 13 miles this weekend. This was a 3 mile increase over my last real long run, some four weeks ago. I felt very good for most of the run. Only at the very end, when we were trying to finish a 14th mile did my body tell me it was time to stop.
The outside stresses have let up a little. We were approved for California Children's Services last week and I can't tell you how much relief I felt. I don't think I realized how big of a stress that was on me.
I've raised about $3200 so far. Last year at this time I had raise over $7000. I know there are a lot of people who contributed last year, and who plan to give this year, who have not sent a donation yet. So, I'm trying not to let it bother me. Still, I have come to terms with the fact that I probably won't raise $15,000 this year. It was ambitious.
Hopefully I can make $10,000. That would still be a remarkable achievement.
That's all for tonight.
Aloha
The outside stresses have let up a little. We were approved for California Children's Services last week and I can't tell you how much relief I felt. I don't think I realized how big of a stress that was on me.
I've raised about $3200 so far. Last year at this time I had raise over $7000. I know there are a lot of people who contributed last year, and who plan to give this year, who have not sent a donation yet. So, I'm trying not to let it bother me. Still, I have come to terms with the fact that I probably won't raise $15,000 this year. It was ambitious.
Hopefully I can make $10,000. That would still be a remarkable achievement.
That's all for tonight.
Aloha
With the anniversary of the September 11th attacks and the ongoing war, the thought of what is a hero is often floating around in the old gray matter. Those men and women who are our public servants, fire fighters, police officers and teachers (to name a few) and those brave souls who are overseas facing gunfire definitely fall into the category of a hero. Still, when I think of a hero, I can't help thinking closer to home. In my family, we have one hero who may not be the most powerful person (yet) and he may not have an opportunity to save lives (yet). The fact that he's only about 3 years old may have something to do with that.
Jacob is my hero. Each day he undergoes his treatments and he takes his medicines, he doesn't put up a fight, he just does them. He's at an age where he's begun to notice that he's doing things differently than any of the other kids. And it really does interrupt his life when he has to be taken away from his big sister or cousins to do a breathing treatment. Still, he keeps a smile on his face and continues to act like it doesn't bother him.
I have seem and heard testimonials from older kids, teenagers, who talk about doing their breathing treatments and how the routine is just a part of their lives. This amazes me. I know that when I as a teen, I wanted nothing more than to fit in. I can't imagine what it must be like to have to take medicine constantly and set aside the time each day to do breathers. I guess it just become natural, at some point. Doesn't it?
Jacob is my hero. Each day he undergoes his treatments and he takes his medicines, he doesn't put up a fight, he just does them. He's at an age where he's begun to notice that he's doing things differently than any of the other kids. And it really does interrupt his life when he has to be taken away from his big sister or cousins to do a breathing treatment. Still, he keeps a smile on his face and continues to act like it doesn't bother him.
I have seem and heard testimonials from older kids, teenagers, who talk about doing their breathing treatments and how the routine is just a part of their lives. This amazes me. I know that when I as a teen, I wanted nothing more than to fit in. I can't imagine what it must be like to have to take medicine constantly and set aside the time each day to do breathers. I guess it just become natural, at some point. Doesn't it?
Wednesday, September 15, 2004
HERE IS THE ARTICLE ABOUT MY FRIEND PETER THAT APPEARED IN LAST SATURDAY'S LA DAILY NEWS.
RUNNING FOR OTHERS BRINGS FULFILLMENT
By Carol Rock
Staff Writer
VALENCIA -- Everything's coming up roses for Peter Lyons.
The coffeehouse worker has dropped 18 pounds and the feeling that he'd never be able to run more than a half-mile. Training for the Orange County marathon in December on a team supporting the Cystic Fibrosis Foundation, the man who pours java for a living has found new friends and purpose.
Most of it traces back to a little guy named John Ross Murphy, Lyons' 7-year old nephew who lives in Bossier Parish, La. Diagnosed with cystic fibrosis when he was 11 months old, he inspires his uncle to do things Lyons never imagined he could.
Thus, the rosy outlook. "65 Roses" is what some children call their disease because the words are much easier for them to pronounce.
"The roses are also a way to describe the children, because most of them are diagnosed when they're little, they're delicate and beautiful like a rose," Lyons said.
Cystic fibrosis is a genetic disease that causes the body to produce abnormally thick, sticky mucus that clogs the lungs and obstructs the pancreas, causing life-threatening lung infections and preventing digestive enzymes from reaching the intestines to absorb food.
According to the national Cystic Fibrosis Foundation, CF occurs in approximately one out of every 3,900 births in America. About 1,000 new cases of CF are diagnosed each year and the median age of survival is just over 33 years.
Back home, Lyons' entire family was part of John Ross' support system, making sure he does breathing treatments twice a day and takes the right amount of enzymes, vitamins, decongestants and antacids so he can function normally.
"That boy is a bundle of energy," Lyons said. "He's a hellion, very creative and definitely one of a kind."
He added that John Ross doesn't feel sorry for himself, but has reached an age where he can ask questions about his condition. Lyons said the child was grateful that his 8-month-old brother, Grant Murphy, who does not have CF, didn't have to have saline squirted up his nose to breathe easier.
"When I left my family and moved to California, I was looking for a way to participate in helping the CF cause out here," he said. "I did the walk in Valencia the last three years, but I knew there had to be something more."
Lyons has been training with Scott Malchus, a Saugus man whose 2-year-old son, Jacob, has CF. Malchus ran the Honolulu marathon in 2003 and raised more than $11,000 for the Cystic Fibrosis Foundation. Lyons says having a local connection makes the universal plight of children with CF even more poignant.
"It's so interesting to get the parents' perspective," he said. "He can unload when we're running and tell me what he's been dealing with. Even though the kids are the ones that have the illness, the parents struggle every day, trying to be optimistic and keep their game faces on. There have been times that Scott tells me he's been scared for his son."
Lyons has been getting support from his employer, Starbucks, and various community groups. He launched a Web page at www.active.com/donate/TeamJohnRoss that shows a smiling youngster playing with his uncle and through which people can make pledges. Vincenzo's Pizza in Newhall is donating a percentage of sales Sept. 20 toward the cause. And Starbucks has pledged to match Lyons' donations up to $1,000.
"The experience has made me so aware of others," Lyons said. "It's so easy, especially in L.A., to focus just on yourself. I've tried, with this marathon, to put myself outside the comfort level. Every day I'm doing something for someone I don't know and may never meet, but it gives me an overwhelming sense of completeness.
"There's a saying I read somewhere that says 'Teach my untrained mind to sing the feelings of my heart,' and that helps me to go one more mile, even though it's 120 degrees outside. It carries over and affects who you are. I have a sense of being connected that I didn't have before."
Carol Rock, (661) 257-5252 carol.rock@dailynews.com
HOW YOU CAN HELP
A fund-raiser for TeamJohnRoss will be held Sept. 20 Vincenzo's Pizza. 24504 Lyons Ave., Newhall. For information, visit www.active.com/donate/TeamJohnRoss.
RUNNING FOR OTHERS BRINGS FULFILLMENT
By Carol Rock
Staff Writer
VALENCIA -- Everything's coming up roses for Peter Lyons.
The coffeehouse worker has dropped 18 pounds and the feeling that he'd never be able to run more than a half-mile. Training for the Orange County marathon in December on a team supporting the Cystic Fibrosis Foundation, the man who pours java for a living has found new friends and purpose.
Most of it traces back to a little guy named John Ross Murphy, Lyons' 7-year old nephew who lives in Bossier Parish, La. Diagnosed with cystic fibrosis when he was 11 months old, he inspires his uncle to do things Lyons never imagined he could.
Thus, the rosy outlook. "65 Roses" is what some children call their disease because the words are much easier for them to pronounce.
"The roses are also a way to describe the children, because most of them are diagnosed when they're little, they're delicate and beautiful like a rose," Lyons said.
Cystic fibrosis is a genetic disease that causes the body to produce abnormally thick, sticky mucus that clogs the lungs and obstructs the pancreas, causing life-threatening lung infections and preventing digestive enzymes from reaching the intestines to absorb food.
According to the national Cystic Fibrosis Foundation, CF occurs in approximately one out of every 3,900 births in America. About 1,000 new cases of CF are diagnosed each year and the median age of survival is just over 33 years.
Back home, Lyons' entire family was part of John Ross' support system, making sure he does breathing treatments twice a day and takes the right amount of enzymes, vitamins, decongestants and antacids so he can function normally.
"That boy is a bundle of energy," Lyons said. "He's a hellion, very creative and definitely one of a kind."
He added that John Ross doesn't feel sorry for himself, but has reached an age where he can ask questions about his condition. Lyons said the child was grateful that his 8-month-old brother, Grant Murphy, who does not have CF, didn't have to have saline squirted up his nose to breathe easier.
"When I left my family and moved to California, I was looking for a way to participate in helping the CF cause out here," he said. "I did the walk in Valencia the last three years, but I knew there had to be something more."
Lyons has been training with Scott Malchus, a Saugus man whose 2-year-old son, Jacob, has CF. Malchus ran the Honolulu marathon in 2003 and raised more than $11,000 for the Cystic Fibrosis Foundation. Lyons says having a local connection makes the universal plight of children with CF even more poignant.
"It's so interesting to get the parents' perspective," he said. "He can unload when we're running and tell me what he's been dealing with. Even though the kids are the ones that have the illness, the parents struggle every day, trying to be optimistic and keep their game faces on. There have been times that Scott tells me he's been scared for his son."
Lyons has been getting support from his employer, Starbucks, and various community groups. He launched a Web page at www.active.com/donate/TeamJohnRoss that shows a smiling youngster playing with his uncle and through which people can make pledges. Vincenzo's Pizza in Newhall is donating a percentage of sales Sept. 20 toward the cause. And Starbucks has pledged to match Lyons' donations up to $1,000.
"The experience has made me so aware of others," Lyons said. "It's so easy, especially in L.A., to focus just on yourself. I've tried, with this marathon, to put myself outside the comfort level. Every day I'm doing something for someone I don't know and may never meet, but it gives me an overwhelming sense of completeness.
"There's a saying I read somewhere that says 'Teach my untrained mind to sing the feelings of my heart,' and that helps me to go one more mile, even though it's 120 degrees outside. It carries over and affects who you are. I have a sense of being connected that I didn't have before."
Carol Rock, (661) 257-5252 carol.rock@dailynews.com
HOW YOU CAN HELP
A fund-raiser for TeamJohnRoss will be held Sept. 20 Vincenzo's Pizza. 24504 Lyons Ave., Newhall. For information, visit www.active.com/donate/TeamJohnRoss.
I hit a low point in training this past weekend. I’ve never felt so uninspired, uninterested, down on myself and lacking in energy than I did on Saturday. Oddly, I woke up that morning with a bundle of energy and felt like I’d be able to take on the ten mile run with no problem. Yet, it wasn’t meant to be that way.
I arrived at the Pasadena Rose Bowl and Robert (our coach) was discussing over training. Everything he said at our morning meeting pointed to the feelings I’ve been having. Perhaps I have been over training. I had had no enthusiasm for a couple of weeks and the every day stresses just allowed for me to not work as hard. But I never expected what happened on Saturday to happen.
I ran with my friend, Peter and we did a total of six miles out of the ten before I petered out. I mean, my body and mind just quit. I decided to walk the last three miles back to our cars. And Peter, being a nice guy, walked with me the whole way. I was disappointed in myself. I felt like I had let myself down. And I felt guilty for dragging Peter into my mental quagmire. I know that a majority of my worries stemmed from the fundraising aspect and the nagging injuries that have bothered me this year. I’m not going to go on about the money raised. Anyone of you who have read the journal has heard my whining. The injuries, however, are another story.
Am I doing myself harm by running this race? My back sure seems to ache a lot more in the morning. And I can’t tell you how uneasy it makes me feel when I bend my right knee and it sounds like celery crunching. I mean, honestly now, can that be good? I don’t think so.
So I went home. On the way home Jules called me in the car to let me know that the local edition of the LA Daily News ran a story about Peter, and that the story mentioned me. This was pretty exciting. Any news that spreads awareness about CF is good news. But when I told her about my bad run, she immediately knew what was going on.
After we read the article (which I am posting), she had tears in her eyes. Not necessarily from the content of the article, but because we hadn’t done something similar. She wants so badly for us to reach the fundraising goal. I couldn’t help think… “Damn, do I have the best wife, or what?” It’s at times like that that I am so thankful that we followed our hearts 11 years ago and didn’t listen to some of the nay Sayers who thought we were rushing into marriage. When you know whom your soul mate is, you know.
Later that night, we had dinner and spent some quality time with Budd and Karyn and their kids. At one point, Budd said to me, “If your back is hurting you so much, do you really want to run a marathon?” Essentially he was giving me an out. He was letting me know that people wouldn’t think less of me if I physically couldn’t do the marathon. What a great big brother. What a great friend. Just hearing his words gave me comfort, and they also gave me strength. “I have to do this. I have to do it for Jake.”
He looked at me. He knew I wasn’t going to back down. “All right,” he replied.
I suddenly felt renewed strength. I also decided that I was only going to run twice during the week and cross train or rest the other days. I am pushing myself too hard and I am beginning to feel splintered. There’s no way I would be able to last another three months like this.
Monday rode my bike. Yesterday I ran. Today I rested. Tomorrow I will run again. I have to say that this altered training routine feels much better already. And I have begun to repeat a couple of mantras to myself while I’m running. They are:
“I don’t care about my time. I’m not out to win the race. I just want to finish the marathon.”
And…
“I’m doing this for Jake.”
The mantras have helped. At the low points, I repeat these saying to myself and I seem to find some energy.
“I’m doing this for Jake.”
The money will come. I’ve already received a lot of donations from people I don’t know. If I can get some from the folks who gave last year, we may not make $15K, but we’ll come pretty darn close.
I’m feeling better and ready to tackle the world again.
Aloha
I arrived at the Pasadena Rose Bowl and Robert (our coach) was discussing over training. Everything he said at our morning meeting pointed to the feelings I’ve been having. Perhaps I have been over training. I had had no enthusiasm for a couple of weeks and the every day stresses just allowed for me to not work as hard. But I never expected what happened on Saturday to happen.
I ran with my friend, Peter and we did a total of six miles out of the ten before I petered out. I mean, my body and mind just quit. I decided to walk the last three miles back to our cars. And Peter, being a nice guy, walked with me the whole way. I was disappointed in myself. I felt like I had let myself down. And I felt guilty for dragging Peter into my mental quagmire. I know that a majority of my worries stemmed from the fundraising aspect and the nagging injuries that have bothered me this year. I’m not going to go on about the money raised. Anyone of you who have read the journal has heard my whining. The injuries, however, are another story.
Am I doing myself harm by running this race? My back sure seems to ache a lot more in the morning. And I can’t tell you how uneasy it makes me feel when I bend my right knee and it sounds like celery crunching. I mean, honestly now, can that be good? I don’t think so.
So I went home. On the way home Jules called me in the car to let me know that the local edition of the LA Daily News ran a story about Peter, and that the story mentioned me. This was pretty exciting. Any news that spreads awareness about CF is good news. But when I told her about my bad run, she immediately knew what was going on.
After we read the article (which I am posting), she had tears in her eyes. Not necessarily from the content of the article, but because we hadn’t done something similar. She wants so badly for us to reach the fundraising goal. I couldn’t help think… “Damn, do I have the best wife, or what?” It’s at times like that that I am so thankful that we followed our hearts 11 years ago and didn’t listen to some of the nay Sayers who thought we were rushing into marriage. When you know whom your soul mate is, you know.
Later that night, we had dinner and spent some quality time with Budd and Karyn and their kids. At one point, Budd said to me, “If your back is hurting you so much, do you really want to run a marathon?” Essentially he was giving me an out. He was letting me know that people wouldn’t think less of me if I physically couldn’t do the marathon. What a great big brother. What a great friend. Just hearing his words gave me comfort, and they also gave me strength. “I have to do this. I have to do it for Jake.”
He looked at me. He knew I wasn’t going to back down. “All right,” he replied.
I suddenly felt renewed strength. I also decided that I was only going to run twice during the week and cross train or rest the other days. I am pushing myself too hard and I am beginning to feel splintered. There’s no way I would be able to last another three months like this.
Monday rode my bike. Yesterday I ran. Today I rested. Tomorrow I will run again. I have to say that this altered training routine feels much better already. And I have begun to repeat a couple of mantras to myself while I’m running. They are:
“I don’t care about my time. I’m not out to win the race. I just want to finish the marathon.”
And…
“I’m doing this for Jake.”
The mantras have helped. At the low points, I repeat these saying to myself and I seem to find some energy.
“I’m doing this for Jake.”
The money will come. I’ve already received a lot of donations from people I don’t know. If I can get some from the folks who gave last year, we may not make $15K, but we’ll come pretty darn close.
I’m feeling better and ready to tackle the world again.
Aloha
Friday, September 10, 2004
Sometimes I try to share letters or emails from friends and family that help me get motivated and rekindle the inspiration I need lately. This week has been hard in that my back continues to nag me and I've just been in a funk.
The fundraising hasn't been going as well as I'd hoped, though it's still early. I did run this morning, but I'll tell ya, I could have easily stayed in bed and slept.
And, wouldn't you know it, just as I'm settling into that funk, we received a wonderful email from our friend Amy Busic, in Cleveland. I'd like to share it with everyone:
******
HI Scott!
I just read some of your journal online and I am
sending you a big hug. I am glad that Jacob is
feeling better, but how scary that must have been. I
have recently been trying to understand my religious
beliefs, and I have been reading about yoga and it's
meditational benefits as well as studying about
Buddhism. I wanted to share a mantra with you that my
brother-n-law sent to me:
"May today there be peace within you.
May you trust that you are exactly where
you are meant to be.
May you not forget the infinite possibilities
that are born of faith.
May you use those gifts that you have
received, and pass on the love that has been given
you."
Stephen Cope
You have been given a great joy and challenge with
Jacob. You can do this job. I wish we were closer to
help. We are always with you, and know that we are
here if you need anything. I know hugs are hard to
give over the phone, but whatever you need.
I just spoke with Julie and told her I am having knee
trouble. After I am fixed may be I can find the
courage and strength to run with you in next years
marathon. I have never run very much at all though,
but I can try:)
We send lots of hugs and kisses!
We love you, Amy
*****
Sometimes it takes someone a little removed from your life to kick you in the butt and remind you what all of this is all about, huh?
10 miles tomorrow morning. I'll have to take it slow, but speed doesn't matter.
Jake had a good doctor's appointment yesterday. They're happy with his weight gain, but a little concerned about his height. His lungs sound great, which is always what we want to hear. My brain's a little scattered. I need to get back into the writing groove.
Aloha
The fundraising hasn't been going as well as I'd hoped, though it's still early. I did run this morning, but I'll tell ya, I could have easily stayed in bed and slept.
And, wouldn't you know it, just as I'm settling into that funk, we received a wonderful email from our friend Amy Busic, in Cleveland. I'd like to share it with everyone:
******
HI Scott!
I just read some of your journal online and I am
sending you a big hug. I am glad that Jacob is
feeling better, but how scary that must have been. I
have recently been trying to understand my religious
beliefs, and I have been reading about yoga and it's
meditational benefits as well as studying about
Buddhism. I wanted to share a mantra with you that my
brother-n-law sent to me:
"May today there be peace within you.
May you trust that you are exactly where
you are meant to be.
May you not forget the infinite possibilities
that are born of faith.
May you use those gifts that you have
received, and pass on the love that has been given
you."
Stephen Cope
You have been given a great joy and challenge with
Jacob. You can do this job. I wish we were closer to
help. We are always with you, and know that we are
here if you need anything. I know hugs are hard to
give over the phone, but whatever you need.
I just spoke with Julie and told her I am having knee
trouble. After I am fixed may be I can find the
courage and strength to run with you in next years
marathon. I have never run very much at all though,
but I can try:)
We send lots of hugs and kisses!
We love you, Amy
*****
Sometimes it takes someone a little removed from your life to kick you in the butt and remind you what all of this is all about, huh?
10 miles tomorrow morning. I'll have to take it slow, but speed doesn't matter.
Jake had a good doctor's appointment yesterday. They're happy with his weight gain, but a little concerned about his height. His lungs sound great, which is always what we want to hear. My brain's a little scattered. I need to get back into the writing groove.
Aloha
Monday, September 06, 2004
Labor Day again. Spent the day lounging around the house with the kids. I didn't want to go out and DO something. I had this thought today... whenever we have a day off; we sometimes leave the house and go somewhere. Today I wanted to hang out at our house. I love this house. We've worked so hard to get it to a place that we love. It's nice just to be here. Of course, Julie is here every day, so I understand why she has to get out sometimes.
I did not run this weekend. I woke up Saturday morning with my back flaring up. I had difficulty getting loose after climbing out of Jake's bed (he and his sister had taken my spot in my bed). I went to meet Peter at the Starbucks where he works and in the short ten minutes it took me to drive three, I knew I should not run at all that day, let alone 12 miles.
The back seemed to calm down by the end of the day, but it was sore again yesterday morning. However, it was night quite as bad as the previous morning, so I was optimistic about the rest of the week. Sure enough, the back is feeling so much better today that I will get up and try to jog in the morning.
I swear, though, I was ready to throw in the towel. I feel like there is so much pressure. I shouldn't have made my goal for $15K. I don't think I'm going to make it. And although I've said I don't care... I do care. I hate setting goals for myself and not achieving them. Listen, I was feeling guilty not running on Saturday for not running even though I was injured AND I've completed a marathon.
Let's not get into the whole church attendance guilt. (But church has something to do with my constant struggle with God and what has happened to Jake. I know, I know... I can't blame God for Jake's illness. But if you believe that Jake was given to Julie and me for a reason... and I do believe that. I believe that we're emotionally equipped- albeit not financially equipped- to love and care for him... but if you believe that he was given to us for this reason, then you have to believe that whomever is doing the giving already knew that Jake was going to have CF. This is a strange tangent and I need to end this parenthesis before I start looking like Herman Melville).
I’m itching to begin writing again. Sadly, I go back and forth between writing something I think may sell (money, again) or something I think will keep me interested artistically. I sooooo want to write something romantic and happy- for Julie, mainly. But I'm having a hard time getting to that place. I'm having a hard time remaining optimistic. I used to be somewhat like Candide and think that all would work out for the best. Whether I can ever be that type of person again, I don't know. Still, at the end of the Voltaire story (of which, I own a wonderful 1929 hardbound copy with illustrations-- Beth gave it to me long ago), Candide has the last line "'Tis well said, but we must cultivate our gardens".
Everything may have a reason, but really, you have to focus on the matters at hand and live your life each day at a time (swell, now I have Pat Harrington's "Schneider" stuck in my head. Worked with Pat Harrington once... but that's another story).
Aloha.
I did not run this weekend. I woke up Saturday morning with my back flaring up. I had difficulty getting loose after climbing out of Jake's bed (he and his sister had taken my spot in my bed). I went to meet Peter at the Starbucks where he works and in the short ten minutes it took me to drive three, I knew I should not run at all that day, let alone 12 miles.
The back seemed to calm down by the end of the day, but it was sore again yesterday morning. However, it was night quite as bad as the previous morning, so I was optimistic about the rest of the week. Sure enough, the back is feeling so much better today that I will get up and try to jog in the morning.
I swear, though, I was ready to throw in the towel. I feel like there is so much pressure. I shouldn't have made my goal for $15K. I don't think I'm going to make it. And although I've said I don't care... I do care. I hate setting goals for myself and not achieving them. Listen, I was feeling guilty not running on Saturday for not running even though I was injured AND I've completed a marathon.
Let's not get into the whole church attendance guilt. (But church has something to do with my constant struggle with God and what has happened to Jake. I know, I know... I can't blame God for Jake's illness. But if you believe that Jake was given to Julie and me for a reason... and I do believe that. I believe that we're emotionally equipped- albeit not financially equipped- to love and care for him... but if you believe that he was given to us for this reason, then you have to believe that whomever is doing the giving already knew that Jake was going to have CF. This is a strange tangent and I need to end this parenthesis before I start looking like Herman Melville).
I’m itching to begin writing again. Sadly, I go back and forth between writing something I think may sell (money, again) or something I think will keep me interested artistically. I sooooo want to write something romantic and happy- for Julie, mainly. But I'm having a hard time getting to that place. I'm having a hard time remaining optimistic. I used to be somewhat like Candide and think that all would work out for the best. Whether I can ever be that type of person again, I don't know. Still, at the end of the Voltaire story (of which, I own a wonderful 1929 hardbound copy with illustrations-- Beth gave it to me long ago), Candide has the last line "'Tis well said, but we must cultivate our gardens".
Everything may have a reason, but really, you have to focus on the matters at hand and live your life each day at a time (swell, now I have Pat Harrington's "Schneider" stuck in my head. Worked with Pat Harrington once... but that's another story).
Aloha.
Thursday, September 02, 2004
Last Wednesday we went through something I never expected. It was quite... horrific is the only word that first comes to mind. Looking back, I guess we were all in a bit of shock when we went to the emergency room for Jacob. And when it happened again on Thursday, you couldn't help but look up and ask "why?"
On Thursday morning, I tried to write down what I was feeling at that moment. I was fried and emotionally drained. Julie called soon after I finished writing this and I didn't post it. So here it is...
At 2:30 yesterday afternoon Julie called me at work. She was panicked because Jacob had something called RECTAL PROLAPSE. It’s something that can happen with Cf patients. To best define it, I’ll refer to this definition I found online: “Rectal prolapse is a condition in which the rectum (the lower end of the colon, located just above the anus) turns itself inside out. In the earliest phases of this condition, the rectum does not stick out of the body, but as the condition worsens, it may protrude.”
Julie and Jake were in the bathroom and all seemed normal, but when she went to lift him up, she saw his rectum sticking out of his bottom. Needless to say, she was distressed. How would you react? When she called, she was close to tears. I didn’t know what to do. She called Jake’s G/I doctor and he instructed her to try and push it back into Jake’s body. Julie tried, but to no avail. So, they went to the emergency room.
Thank God Heather Cruz was there. She had come by to pick up her son, Ben. Julie was babysitting him while Heather and Vill were at a movie. But Heather drove Julie and Jake to the hospital while I rushed home from Hollywood.
It’s always stressful going into a hospital, especially for something you know nothing about. Luckily, Julie had read about this condition before and looked at am illustration. She knew what was wrong when she called the doctor and took Jake into the hospital. When I got there, they were already in an examination area and had been spoken to by a doctor. Heather and Ben left and we waited until the staff was ready to fix up Jake.
They had to sedate him and that was scary in itself. You hear stories about complications from medicines. But Jake did fine. The poor guy was so out of it when he woke up with a bandage taped to his bottom. During the time when the doctor was putting everything back in order, I felt light headed for a couple of minutes. I didn’t get a look at his body. Still, I was overwhelmed with emotion and stress… I thought ˆ was going to get sick. Julie, on the other hand, really held it together. But both of us were on the verge of crying the whole time. Even now, as I write this, I full of anger and fear and sorrow and I’m clouding up.
After everything was done they did a cat scan of his belly, wanting to check if he was backed up. He’s obviously malnourishing. And this seems like an extension of a problem he had early last year when he got backed up and stopped eating. Here we thought he was just being 2 and not wanting to eat, and maybe he’s been clogged up and feels full all of the time. Who knows?
Our neighbor, Missy Miler, had picked up Sophie from school and thank god she did. Soph would have freaked out in the hospital. As it was, I believe she started to get scared, especially when she learned that we were in the hospital and not just the doctor’s office. When we got home she got really upset. Man, it was hard for all of us to keep it together.
Later on, when I went out to pick up Jake’s medicine (a strong laxative called Miralax), I had to pull over to the side of the road and bawl my eyes out. These past two weeks seem to come to a head at that moment and I couldn’t keep it in anymore. Still, it’s pretty emotional sitting here writing about everything.
Before he went to bed, Jake had to go to the bathroom again. Jules couldn’t even sit in the room with him she was so anxious. And I was trying to keep a smile on my face while Jake threw his Elmo ball to me every couple of seconds (and, hey, he’s learned how to catch a ball…. Good for him). Thankfully, everything was fine when we lifted him off the toilet. But I know Julie was freaked out, waiting for the next day when he has to go to the bathroom. She confirmed that this morning when I spoke to her briefly.
As the night came to an end and the kids finally fell asleep, Julie and I sat like zombies, staring at whatever mindless sitcom we could find on the television. We hardly laughed. Instead, we just watched in silence as inane plots played out in front of us.
**************
As you can tell, come Thursday night, I was in no mood to be writing about CF or running a damn marathon. I know Sophie had a hard time on Thursday. That day, we took here to Karyn's house. She knew we were at the hospital but still did not know why. She has been through a lot of hospital trips. She endured a lot when Julie was in the hospital before Jake was born. Man, that was a stressful time. And when Jake was in the hospital for a week with pneumonia back in 2002, I'm afraid Sophie took the brunt of my fears and concerns.
I hate that I ever lashed out at my little girl. She doesn't deserve that. And last week, when everything was going down, I could feel that kind of pressure building up inside of me.
I know this guy named Jay Marr, known him since junior high. Back in high school, he once got so angry with a girlfriend that he punched the windshield of his car and actually cracked it. That's how much anger he felt. And that's the kind of anger and aggression I was feeling Wednesday night. I wanted to lash out at something. I wanted to have my drums down from the rafters to pound the hell out of them. I just wanted to release. And that opportunity never presented itself. Yes, I did break down and cry after I pulled over to the side of the road. Somehow I overcame my own... embarrassment to let myself sob. That helped a little. But more and more, I can feel this pressure building up.
Jake took everything in stride on Thursday. When I arrived at the hospital to meet Julie and him, he was smiling and said, "Daddy, my butt hurt again."
I made myself look at his rectal prolapse on Thursday. I needed to see what it looked like in case I was ever alone with him and it happened. I was surprised how much it looked like... like raw meat. I guess that's what organs look like, isn't it? I wasn't grossed out and I didn't get light headed or anything like that. It was kind of surreal that this large piece of his insides could come out of that tiny hole in his bottom.
Since Thursday and being placed on the laxative, we haven't had any other incidents. Jake has had some major blowouts sitting on the pot. I guess that's good. He still complains that his tummy hurts and he won't eat anything. Is he just being 2 or is there something else?
Who the hell knows?
It really is a day-to-day thing, you know? That phrase "one day at a time" isn't just some bad McKenzie Phillips sitcom that ran for too many years. It's a fact of life... ugh, another bad sitcom reference. And on that note....
Aloha
On Thursday morning, I tried to write down what I was feeling at that moment. I was fried and emotionally drained. Julie called soon after I finished writing this and I didn't post it. So here it is...
At 2:30 yesterday afternoon Julie called me at work. She was panicked because Jacob had something called RECTAL PROLAPSE. It’s something that can happen with Cf patients. To best define it, I’ll refer to this definition I found online: “Rectal prolapse is a condition in which the rectum (the lower end of the colon, located just above the anus) turns itself inside out. In the earliest phases of this condition, the rectum does not stick out of the body, but as the condition worsens, it may protrude.”
Julie and Jake were in the bathroom and all seemed normal, but when she went to lift him up, she saw his rectum sticking out of his bottom. Needless to say, she was distressed. How would you react? When she called, she was close to tears. I didn’t know what to do. She called Jake’s G/I doctor and he instructed her to try and push it back into Jake’s body. Julie tried, but to no avail. So, they went to the emergency room.
Thank God Heather Cruz was there. She had come by to pick up her son, Ben. Julie was babysitting him while Heather and Vill were at a movie. But Heather drove Julie and Jake to the hospital while I rushed home from Hollywood.
It’s always stressful going into a hospital, especially for something you know nothing about. Luckily, Julie had read about this condition before and looked at am illustration. She knew what was wrong when she called the doctor and took Jake into the hospital. When I got there, they were already in an examination area and had been spoken to by a doctor. Heather and Ben left and we waited until the staff was ready to fix up Jake.
They had to sedate him and that was scary in itself. You hear stories about complications from medicines. But Jake did fine. The poor guy was so out of it when he woke up with a bandage taped to his bottom. During the time when the doctor was putting everything back in order, I felt light headed for a couple of minutes. I didn’t get a look at his body. Still, I was overwhelmed with emotion and stress… I thought ˆ was going to get sick. Julie, on the other hand, really held it together. But both of us were on the verge of crying the whole time. Even now, as I write this, I full of anger and fear and sorrow and I’m clouding up.
After everything was done they did a cat scan of his belly, wanting to check if he was backed up. He’s obviously malnourishing. And this seems like an extension of a problem he had early last year when he got backed up and stopped eating. Here we thought he was just being 2 and not wanting to eat, and maybe he’s been clogged up and feels full all of the time. Who knows?
Our neighbor, Missy Miler, had picked up Sophie from school and thank god she did. Soph would have freaked out in the hospital. As it was, I believe she started to get scared, especially when she learned that we were in the hospital and not just the doctor’s office. When we got home she got really upset. Man, it was hard for all of us to keep it together.
Later on, when I went out to pick up Jake’s medicine (a strong laxative called Miralax), I had to pull over to the side of the road and bawl my eyes out. These past two weeks seem to come to a head at that moment and I couldn’t keep it in anymore. Still, it’s pretty emotional sitting here writing about everything.
Before he went to bed, Jake had to go to the bathroom again. Jules couldn’t even sit in the room with him she was so anxious. And I was trying to keep a smile on my face while Jake threw his Elmo ball to me every couple of seconds (and, hey, he’s learned how to catch a ball…. Good for him). Thankfully, everything was fine when we lifted him off the toilet. But I know Julie was freaked out, waiting for the next day when he has to go to the bathroom. She confirmed that this morning when I spoke to her briefly.
As the night came to an end and the kids finally fell asleep, Julie and I sat like zombies, staring at whatever mindless sitcom we could find on the television. We hardly laughed. Instead, we just watched in silence as inane plots played out in front of us.
**************
As you can tell, come Thursday night, I was in no mood to be writing about CF or running a damn marathon. I know Sophie had a hard time on Thursday. That day, we took here to Karyn's house. She knew we were at the hospital but still did not know why. She has been through a lot of hospital trips. She endured a lot when Julie was in the hospital before Jake was born. Man, that was a stressful time. And when Jake was in the hospital for a week with pneumonia back in 2002, I'm afraid Sophie took the brunt of my fears and concerns.
I hate that I ever lashed out at my little girl. She doesn't deserve that. And last week, when everything was going down, I could feel that kind of pressure building up inside of me.
I know this guy named Jay Marr, known him since junior high. Back in high school, he once got so angry with a girlfriend that he punched the windshield of his car and actually cracked it. That's how much anger he felt. And that's the kind of anger and aggression I was feeling Wednesday night. I wanted to lash out at something. I wanted to have my drums down from the rafters to pound the hell out of them. I just wanted to release. And that opportunity never presented itself. Yes, I did break down and cry after I pulled over to the side of the road. Somehow I overcame my own... embarrassment to let myself sob. That helped a little. But more and more, I can feel this pressure building up.
Jake took everything in stride on Thursday. When I arrived at the hospital to meet Julie and him, he was smiling and said, "Daddy, my butt hurt again."
I made myself look at his rectal prolapse on Thursday. I needed to see what it looked like in case I was ever alone with him and it happened. I was surprised how much it looked like... like raw meat. I guess that's what organs look like, isn't it? I wasn't grossed out and I didn't get light headed or anything like that. It was kind of surreal that this large piece of his insides could come out of that tiny hole in his bottom.
Since Thursday and being placed on the laxative, we haven't had any other incidents. Jake has had some major blowouts sitting on the pot. I guess that's good. He still complains that his tummy hurts and he won't eat anything. Is he just being 2 or is there something else?
Who the hell knows?
It really is a day-to-day thing, you know? That phrase "one day at a time" isn't just some bad McKenzie Phillips sitcom that ran for too many years. It's a fact of life... ugh, another bad sitcom reference. And on that note....
Aloha
Tuesday, August 31, 2004
I have not written about our incident last Thursday and Friday, yet. On Thursday I wrote my thoughts out and was prepared to add it to the blog when Julie called me to come home again. I would rather wait until tomorrow when I can look at what I wrote, place it on the blog and then write with a little more perspective.
We've been pretty crazed here as we worry about Jake's digestive troubles. He sometimes complains that his tummy hurts and we now question whether these complaints are his way of getting out of eating, or if he really has some discomfort from something blocking up his bowels. At this point we're kind of in a wait and see state of mind, which, when your child has an illness, isn't a comfortable way to be living. You want definite answers.
This past weekend really cleared my head out, though, and I'm through worrying about how many runners we get for the marathon and whether or not my friends are running. At this point, I have to concentrate on my own running and my own fundraising. And even on that front, I'm trying not to stress out about the total amount I raise. Truth is I've already raised over a thousand dollars, which is a lot of money in today's economy.
I put this pressure on myself and it really weighs me down. My head gets cluttered, that's for sure.
Ran yesterday and I was pretty excited to get out there. The weather is really beginning to be cool in the mornings, making the runs a lot nicer.
Aloha
We've been pretty crazed here as we worry about Jake's digestive troubles. He sometimes complains that his tummy hurts and we now question whether these complaints are his way of getting out of eating, or if he really has some discomfort from something blocking up his bowels. At this point we're kind of in a wait and see state of mind, which, when your child has an illness, isn't a comfortable way to be living. You want definite answers.
This past weekend really cleared my head out, though, and I'm through worrying about how many runners we get for the marathon and whether or not my friends are running. At this point, I have to concentrate on my own running and my own fundraising. And even on that front, I'm trying not to stress out about the total amount I raise. Truth is I've already raised over a thousand dollars, which is a lot of money in today's economy.
I put this pressure on myself and it really weighs me down. My head gets cluttered, that's for sure.
Ran yesterday and I was pretty excited to get out there. The weather is really beginning to be cool in the mornings, making the runs a lot nicer.
Aloha
Sunday, August 29, 2004
Haven't written for several days. We had some pretty emotional days since Wednesday and I wasn't ready to write about them in detail. I'll have something tomorrow. We took two trips to the emergency room with Jake and it wiped us out.
I did make the long run yesterday morning. 8 miles. I started off pretty ragged, but found my legs by the last two miles. I felt great at the very end and for the first time in about a month, I felt optimistic about the marathon and my running.
So far, we have raised about $1,600. I'm very happy about that, but there is still a long way to go.
That's all for tonight.
Aloha
I did make the long run yesterday morning. 8 miles. I started off pretty ragged, but found my legs by the last two miles. I felt great at the very end and for the first time in about a month, I felt optimistic about the marathon and my running.
So far, we have raised about $1,600. I'm very happy about that, but there is still a long way to go.
That's all for tonight.
Aloha
Monday, August 23, 2004
It has been brought to my attention that, at times, my blog can be quite depressing. I was a little surprised to hear this. I don’t want to come across like our life here in California is one big major drag. Quite the contrary. We have a wonderful life. Our children adore each other and show a great deal of love and compassion toward their family and friends. And Julie and I seem to being closer than ever.
Last week was a tough week. A lot of crap fell in one week. I believe it was the alignment of the stars. How else can you explain how the Indians were one game of first at the beginning of the week and then promptly dropped seven in a row? For those of you who aren’t into baseball, I apologize.
However, I will make an attempt to find something positive to say in most of my entries. I believe that the only way to find your way out of the dark places is to generate some kind of positive thinking.
And here is how the week ended on a good note:
Friday night Budd and I took in the Van Halen concert. Despite my disappointment in some parts of the concert (I mean, we paid $100 a ticket!! I should have been blown out of my seat. I was not), we all had a great time. It was great to just let go for even a couple of hours.
Amazingly enough, I was able to get up the next morning and go run 10 miles in Pasadena. This despite the constant throbbing pain that keeps waking me up every night… gotta love tooth problems. Let this be a lesson to all of you kids who don’t think flossing does anything. By the time you reach 35 and you have to get a couple root canals, a little bit of string between your teeth that takes, like, five minutes to use, isn’t so bad.
The ten miles was pretty easy. I was tired, but I didn’t ache. Glad I went.
That night, Sophie and Jules went to a movie and a tea. Soph came back with the biggest smile on her face. She had so much fun. And Jake and I had a good time hanging out with Vill and Ben. Guys’ night… in. Still very cool.
The rest of the weekend was typical. Yard work. Cleaning. Laundry. But I like this routine. I love our house and I take great pride in it. I don’t whether we’ll ever be able to afford something bigger than this nice home, so I want it to look great all of the time. That said; it’s nearly impossible to keep the house clean more than a day when you have two kids running around. But I wouldn’t have it any other way.
Today I was uninspired to run and barely put in 20 minutes. I know that some of the stresses from last week were hanging on me. But we’ve written California Children’s Services (Julie did a great job with the letter) and once the envelope is in the mailbox, it’s out of our hands. We can only hope and pray.
Aloha
Last week was a tough week. A lot of crap fell in one week. I believe it was the alignment of the stars. How else can you explain how the Indians were one game of first at the beginning of the week and then promptly dropped seven in a row? For those of you who aren’t into baseball, I apologize.
However, I will make an attempt to find something positive to say in most of my entries. I believe that the only way to find your way out of the dark places is to generate some kind of positive thinking.
And here is how the week ended on a good note:
Friday night Budd and I took in the Van Halen concert. Despite my disappointment in some parts of the concert (I mean, we paid $100 a ticket!! I should have been blown out of my seat. I was not), we all had a great time. It was great to just let go for even a couple of hours.
Amazingly enough, I was able to get up the next morning and go run 10 miles in Pasadena. This despite the constant throbbing pain that keeps waking me up every night… gotta love tooth problems. Let this be a lesson to all of you kids who don’t think flossing does anything. By the time you reach 35 and you have to get a couple root canals, a little bit of string between your teeth that takes, like, five minutes to use, isn’t so bad.
The ten miles was pretty easy. I was tired, but I didn’t ache. Glad I went.
That night, Sophie and Jules went to a movie and a tea. Soph came back with the biggest smile on her face. She had so much fun. And Jake and I had a good time hanging out with Vill and Ben. Guys’ night… in. Still very cool.
The rest of the weekend was typical. Yard work. Cleaning. Laundry. But I like this routine. I love our house and I take great pride in it. I don’t whether we’ll ever be able to afford something bigger than this nice home, so I want it to look great all of the time. That said; it’s nearly impossible to keep the house clean more than a day when you have two kids running around. But I wouldn’t have it any other way.
Today I was uninspired to run and barely put in 20 minutes. I know that some of the stresses from last week were hanging on me. But we’ve written California Children’s Services (Julie did a great job with the letter) and once the envelope is in the mailbox, it’s out of our hands. We can only hope and pray.
Aloha
Friday, August 20, 2004
Yesterday was one of the hard days. Financial worries are the most stressful thing in my life. The most discouraging news we received was that we've been turned down for California Children’s Services. Apparently we make too much money. Strange, when I look at our taxes from 2002 and 2003, we made almost half what me made in 2002 in 2003. And yet, we qualified last year. I really don't know how we'll make it when we have to begin paying that 20% for all of Jake's medicines and doctor visits. And I haven't gotten a raise in 3 years. And I can't really quit my job and go look for a new one because I can't afford to lose our benefits. And whose really going to hire a 35-year-old man as an administrative assistant? And it's too late to start my career over, not with a family and our situation.
To make the day more pleasant, my dentist had a field day grinding away at one of my teeth. The fact that I've been grinding my teeth at night is not making my mouth feel any better. I have begun taking Advil like candy. That can't be a good thing.
But we have begun raising some money and that is something positive to come out of this very long week. So far, in the short week since I sent out the letter, we've raise $985. That's awesome. Of course, we have to continue to average about that amount to make the goal of $15K. What was I thinking?
Can I tell you how truly wonderful my wife is? Here I am, grinding my teeth over trying to raise the money, and she's stressing about wanting me to reach that goal, as well. I keep forgetting that I'm not in this alone. I know it's my body and it's my name signed at the bottom of all of those letters, but it really is a family affair. God, I love that woman so much. I lose sight, sometimes, of how fortunate I am to have Julie as my partner in life. When we were younger, and there were fewer distractions, I'm sure I told her that every day. Now, I'm lucky if I remember to tell her once a week.
I'm going to call her right now....
Okay, I just called her. That was worth it. I have to go now. I'm off to the Van Hagar concert.
I know, I know. How does a guy go from Springsteen to Sammy, Eddie, Mike and Alex? I can't explain it. I dig their music. It's pretty mindless and I need mindless.
I have to get up and run 10 miles tomorrow morning, so I can't get too crazy.
Aloha.
To make the day more pleasant, my dentist had a field day grinding away at one of my teeth. The fact that I've been grinding my teeth at night is not making my mouth feel any better. I have begun taking Advil like candy. That can't be a good thing.
But we have begun raising some money and that is something positive to come out of this very long week. So far, in the short week since I sent out the letter, we've raise $985. That's awesome. Of course, we have to continue to average about that amount to make the goal of $15K. What was I thinking?
Can I tell you how truly wonderful my wife is? Here I am, grinding my teeth over trying to raise the money, and she's stressing about wanting me to reach that goal, as well. I keep forgetting that I'm not in this alone. I know it's my body and it's my name signed at the bottom of all of those letters, but it really is a family affair. God, I love that woman so much. I lose sight, sometimes, of how fortunate I am to have Julie as my partner in life. When we were younger, and there were fewer distractions, I'm sure I told her that every day. Now, I'm lucky if I remember to tell her once a week.
I'm going to call her right now....
Okay, I just called her. That was worth it. I have to go now. I'm off to the Van Hagar concert.
I know, I know. How does a guy go from Springsteen to Sammy, Eddie, Mike and Alex? I can't explain it. I dig their music. It's pretty mindless and I need mindless.
I have to get up and run 10 miles tomorrow morning, so I can't get too crazy.
Aloha.
Wednesday, August 18, 2004
After the great feeling Monday morning, I was a bit distressed at how unprepared I was to run this morning. Stress, mostly, was bearing down once again. Worried about the California Children’s Services application. If they deem us too "wealthy" for the service, we're suddenly responsible for that portion of the medicines we haven't been paying for a year. I don't need to tell you how fast our credit card debt will increase and how fast out Savings will be depleted.
At some point it has to get easier, doesn't it? Times like these I wish I could curl up in a ball and squeeze my eyes shut tight to make everything go away. However, I have enough of a grasp on reality to know that this method only works when you are three to five years old or if you are insane.
Still, I was able to squeeze out a decent run this morning, taking on the Decoro hill and pushing myself to run a little faster than usual. In the end, it was worth it.
The day was filled with old friends. I saw Tony and his daughter, Brianna, for about 10 minutes. They were on their way to a casting call for her, which was taking place down the street from where I work. It was cool seeing them, even if it was for just a brief time. Had lunch with my friend Wes, who his running the marathon and raising money for CF, and his partner in crime, Tom Lawless. Always good to see Tom. And on my way home another Wes, my good friend from North Carolina, called to check in. Wes is one of the most talented artists I know and I really respect him.
As I get older, I come to appreciate these small moments with my friends, whether it's a ten-minute walk or a phone conversation with someone I haven't seen in almost a year. Friends... good friends, are hard to come by.
Sophie had a difficult time yesterday morning when Jules dropped her off at Kindergarten. This morning was a little easier. It is gong to be a bigger adjustment than we thought. I know she's going to do so well once she gets comfortable. She's so special.
Aloha
At some point it has to get easier, doesn't it? Times like these I wish I could curl up in a ball and squeeze my eyes shut tight to make everything go away. However, I have enough of a grasp on reality to know that this method only works when you are three to five years old or if you are insane.
Still, I was able to squeeze out a decent run this morning, taking on the Decoro hill and pushing myself to run a little faster than usual. In the end, it was worth it.
The day was filled with old friends. I saw Tony and his daughter, Brianna, for about 10 minutes. They were on their way to a casting call for her, which was taking place down the street from where I work. It was cool seeing them, even if it was for just a brief time. Had lunch with my friend Wes, who his running the marathon and raising money for CF, and his partner in crime, Tom Lawless. Always good to see Tom. And on my way home another Wes, my good friend from North Carolina, called to check in. Wes is one of the most talented artists I know and I really respect him.
As I get older, I come to appreciate these small moments with my friends, whether it's a ten-minute walk or a phone conversation with someone I haven't seen in almost a year. Friends... good friends, are hard to come by.
Sophie had a difficult time yesterday morning when Jules dropped her off at Kindergarten. This morning was a little easier. It is gong to be a bigger adjustment than we thought. I know she's going to do so well once she gets comfortable. She's so special.
Aloha
Monday, August 16, 2004
Today was Sophie's first day of kindergarten and she did AWESOME! I can't believe how well she did when Julie dropped her off at the school. While a little nervous at first, she settled right in and even waved goodbye to Julie when her teacher took the class outside and the parents were leaving. I am so proud of her. Still, it's kind of sad, she's growing up so fast. I am constantly amazed at how bright she is, but it tugs on my heart. Julie is sad, too. Sophie is now going to be in school every day for the next 13 years. That "freedom" of a certain age of childhood is slipping away from us. Still, you can’t beat hearing the tremendous level of joy and excitement that she had when she called me before and after school.
I ran for about 45 minutes this morning and I felt great. The first good Monday run I've had in a long time. Must have something to do with settling in to the Pasadena runs on Saturdays. The rest of the day, for me, was average. I find myself watching the mailbox, hoping for people to make donations. Because I've set the bar high this year, I'm really nervous about reaching that goal. What if last year was a fluke? What if I don't even make half of what I made last year? Is the fundraising a failure? It's causing my stomach to do more laps than the Olympic swimmers.
Speaking of the Summer Games, there are these ads, they run them every 2 years, that show the roles parents play in the raising of a child athlete. One in particular this year has really affected me. It’s about how parents support the dreams of their children and begins with "I will be your breath" or something like that. It continues with "I will be your strength and support" etc. I can't help but think of Jake and this marathon. I running my body into the ground this year and I would do more if I could if it would help find a cure. I would give my lungs for that boy.
Not sure how I'm gong to make it through these next few months. Every time my body wants to quit on me, whether it's my back tightening up during stressful moments, or my knee clicking a hundred times or more throughout the course of the day, I just keep thinking about Jake and the hard road that may lie ahead of him.
I'll see a doctor in January about my knee. Because if a doctor were to tell me to stop running on it, that advice wouldn't be any good until January anyway. I'm running this marathon.
Aloha
I ran for about 45 minutes this morning and I felt great. The first good Monday run I've had in a long time. Must have something to do with settling in to the Pasadena runs on Saturdays. The rest of the day, for me, was average. I find myself watching the mailbox, hoping for people to make donations. Because I've set the bar high this year, I'm really nervous about reaching that goal. What if last year was a fluke? What if I don't even make half of what I made last year? Is the fundraising a failure? It's causing my stomach to do more laps than the Olympic swimmers.
Speaking of the Summer Games, there are these ads, they run them every 2 years, that show the roles parents play in the raising of a child athlete. One in particular this year has really affected me. It’s about how parents support the dreams of their children and begins with "I will be your breath" or something like that. It continues with "I will be your strength and support" etc. I can't help but think of Jake and this marathon. I running my body into the ground this year and I would do more if I could if it would help find a cure. I would give my lungs for that boy.
Not sure how I'm gong to make it through these next few months. Every time my body wants to quit on me, whether it's my back tightening up during stressful moments, or my knee clicking a hundred times or more throughout the course of the day, I just keep thinking about Jake and the hard road that may lie ahead of him.
I'll see a doctor in January about my knee. Because if a doctor were to tell me to stop running on it, that advice wouldn't be any good until January anyway. I'm running this marathon.
Aloha
Saturday, August 14, 2004
I didn't know what to expect this morning when I arrived at the group run down by the Rose Bowl. I was pleasantly surprised to see my old training partner, Sebastian, on hand to train for a half marathon. We ran two miles together until he turned back. I ran on. I wanted to get in 8 miles. Up ahead of me for the first 4 miles was a man named Peter Lyons, who is from Valencia and is also running for CF. When he turned around at mile 4, I was about 100 yards behind him and so I ran the last 4 miles back with him. Although I had to switch from a 5/1 to a 3/1 for the run back, it was worth it. It's always better to run with someone. It makes the time go by faster and you get to know someone you might not otherwise meet in your daily life.
Peter's nephew has CF, so the cause is close to his heart. We had a nice conversation all the way back and I hope to see him again in the upcoming weeks. I'm going to send him my letter this coming week to help him get started with his fundraising. Luckily, he works for Starbucks, so he should be able to get some corporate money out of them.
Now, if we could just get some more runners.
Aloha
Peter's nephew has CF, so the cause is close to his heart. We had a nice conversation all the way back and I hope to see him again in the upcoming weeks. I'm going to send him my letter this coming week to help him get started with his fundraising. Luckily, he works for Starbucks, so he should be able to get some corporate money out of them.
Now, if we could just get some more runners.
Aloha
Friday, August 13, 2004
And finally, I wanted to post the letter I sent out, just so it's there to read....
August 10, 2004
“Run, Daddy, run!”
That’s what my son, Jacob shouts to me when we’re chasing his older sister, Sophie down the street. While Sophie pedals away on her two-wheeler, Jacob’s little arms pump and his legs gallop in red, scuffed up hand-me-down cowboy boots. It’s at times like these that I’m filled with hope that his little body will continue to be strong and that his lungs will remain healthy.
It’s been a year since I first wrote most of you about my marathon fundraiser. Last year, I trained for the Honolulu marathon and raised over $11,000 to help combat Cystic Fibrosis, the deadly illness that afflicts 33,000 children and adults in the United States alone; the deadly disease that inhabits my precious son’s body.
Cystic Fibrosis (CF) causes the body to produce abnormally thick, sticky mucus often creating potentially life threatening lung infections, as well as a host of other problems throughout the body. Jacob also has a great deal of trouble with his digestive track due to CF. Because the thick mucus blocks his pancreas; he takes digestive enzymes every time he eats in order to absorb the nutrients from his food. On an average day Jacob takes oral medication 10 times as well as having nebulizer breathing treatments 3 times daily to help keep his lungs healthy. During those treatments he wears a special vibrating vest that helps break up the thick mucus that clogs his lungs.
Cystic fibrosis is a progressive disease so we must do all these things to keep Jacob healthy. Although the gene for Cystic Fibrosis was discovered in the early 90’s and much progress has been made since then, currently there is no cure for the disease. One half of the individuals with CF live into their 30’s; however, the other half does not.
These are the dreaded statistics we live with as a family. Of course, you can’t dwell on the facts or you’d never be able to function. But the details about CF are always there, hovering like a black cloud. Most days, I fear that Julie bears the brunt of the responsibility for Jacob’s illness. She is home with him while I go to work and she administers most of his medications and does the majority of his breathing treatments. I don’t know how she keeps it together. If it was me, I would be in tears most of the time. As it is, whenever I drift to that place in which the specter of CF grips me, I walk around in a haze, struggling to stay strong.
I would trade all of the good fortunes in my life to find a cure for my son. I would use every ounce of my energy to help rid the world of CF. But I am not a doctor or a scientist. So I must do what I can… what is within my capabilities… to raise awareness and money in the battle. So, I have decided to undertake another marathon. On December 5 of this year, I will use every ounce of my energy to help find a cure and raise money by participating in the Orange County Marathon, here is sunny Southern California. But I need your help.
As I said, last year I raised a lot of money, and this year I have raised the bar. I’ve set a goal of $15,000. It’s a large goal, but it’s one I believe can be reached. Like last year, it’s my hope that anyone receiving this letter can make a donation of $50.00 or more. Those of you who donated last year, I’m asking you, can you spare ten or twenty dollars more? Or perhaps you have family or friends who would be interested in helping that crazy father in California who insists on punishing his body for a good cause. Of course, any donation I receive will be appreciated from the bottom of my heart. I pledge to all of you that I will dedicate the next five months of my life to making you all proud. And when I reach that finish line and find my children cheering for me, I’ll lift them in my arms and carry them with me.
Please make checks out to: The Cystic Fibrosis Foundation and mail them to me at:
Scott Malchus
22331 Los Tigres Dr.
Saugus, CA 91350
Or, you can go online and donate at this web address: http://active.com/donate/cffca/teammalchus
I need any donations by the end of November. Your cancelled check will serve as your receipt.
Last year’s marathon was a bit overwhelming. Besides being one of 6 people running for CF, it was incredible to be swept up in the mass of 20,000 people. The Orange County Marathon will be smaller and with the CF Foundation on all of the literature and t-shirts, I believe this race may be a bigger challenge. Each step I take won’t be for me, but for Jacob… for his life and future. He is such a sweet loving boy and we are blessed that he has been healthy his two years of life. He deserves to have a life like you and I. A life without the fear of hospitalization or worse. A life without Cystic Fibrosis.
As I train and eventually run the marathon, I know I’ll have to dig deep to find the energy to complete the grueling task. The energy will be there, though. It will come from the sound of my darling Julie and precious Sophie cheering me on. And it will come from the spirited voice of my beloved Jacob, shouting to me, “Run Daddy, run!”
*********
August 10, 2004
“Run, Daddy, run!”
That’s what my son, Jacob shouts to me when we’re chasing his older sister, Sophie down the street. While Sophie pedals away on her two-wheeler, Jacob’s little arms pump and his legs gallop in red, scuffed up hand-me-down cowboy boots. It’s at times like these that I’m filled with hope that his little body will continue to be strong and that his lungs will remain healthy.
It’s been a year since I first wrote most of you about my marathon fundraiser. Last year, I trained for the Honolulu marathon and raised over $11,000 to help combat Cystic Fibrosis, the deadly illness that afflicts 33,000 children and adults in the United States alone; the deadly disease that inhabits my precious son’s body.
Cystic Fibrosis (CF) causes the body to produce abnormally thick, sticky mucus often creating potentially life threatening lung infections, as well as a host of other problems throughout the body. Jacob also has a great deal of trouble with his digestive track due to CF. Because the thick mucus blocks his pancreas; he takes digestive enzymes every time he eats in order to absorb the nutrients from his food. On an average day Jacob takes oral medication 10 times as well as having nebulizer breathing treatments 3 times daily to help keep his lungs healthy. During those treatments he wears a special vibrating vest that helps break up the thick mucus that clogs his lungs.
Cystic fibrosis is a progressive disease so we must do all these things to keep Jacob healthy. Although the gene for Cystic Fibrosis was discovered in the early 90’s and much progress has been made since then, currently there is no cure for the disease. One half of the individuals with CF live into their 30’s; however, the other half does not.
These are the dreaded statistics we live with as a family. Of course, you can’t dwell on the facts or you’d never be able to function. But the details about CF are always there, hovering like a black cloud. Most days, I fear that Julie bears the brunt of the responsibility for Jacob’s illness. She is home with him while I go to work and she administers most of his medications and does the majority of his breathing treatments. I don’t know how she keeps it together. If it was me, I would be in tears most of the time. As it is, whenever I drift to that place in which the specter of CF grips me, I walk around in a haze, struggling to stay strong.
I would trade all of the good fortunes in my life to find a cure for my son. I would use every ounce of my energy to help rid the world of CF. But I am not a doctor or a scientist. So I must do what I can… what is within my capabilities… to raise awareness and money in the battle. So, I have decided to undertake another marathon. On December 5 of this year, I will use every ounce of my energy to help find a cure and raise money by participating in the Orange County Marathon, here is sunny Southern California. But I need your help.
As I said, last year I raised a lot of money, and this year I have raised the bar. I’ve set a goal of $15,000. It’s a large goal, but it’s one I believe can be reached. Like last year, it’s my hope that anyone receiving this letter can make a donation of $50.00 or more. Those of you who donated last year, I’m asking you, can you spare ten or twenty dollars more? Or perhaps you have family or friends who would be interested in helping that crazy father in California who insists on punishing his body for a good cause. Of course, any donation I receive will be appreciated from the bottom of my heart. I pledge to all of you that I will dedicate the next five months of my life to making you all proud. And when I reach that finish line and find my children cheering for me, I’ll lift them in my arms and carry them with me.
Please make checks out to: The Cystic Fibrosis Foundation and mail them to me at:
Scott Malchus
22331 Los Tigres Dr.
Saugus, CA 91350
Or, you can go online and donate at this web address: http://active.com/donate/cffca/teammalchus
I need any donations by the end of November. Your cancelled check will serve as your receipt.
Last year’s marathon was a bit overwhelming. Besides being one of 6 people running for CF, it was incredible to be swept up in the mass of 20,000 people. The Orange County Marathon will be smaller and with the CF Foundation on all of the literature and t-shirts, I believe this race may be a bigger challenge. Each step I take won’t be for me, but for Jacob… for his life and future. He is such a sweet loving boy and we are blessed that he has been healthy his two years of life. He deserves to have a life like you and I. A life without the fear of hospitalization or worse. A life without Cystic Fibrosis.
As I train and eventually run the marathon, I know I’ll have to dig deep to find the energy to complete the grueling task. The energy will be there, though. It will come from the sound of my darling Julie and precious Sophie cheering me on. And it will come from the spirited voice of my beloved Jacob, shouting to me, “Run Daddy, run!”
*********
It's turned out to be an excellent day. I ran this morning for about 40 minutes (after lathering Ben-gay like gel all over my back) and I felt pretty good. I held an ice pack on my back for the drive into work and there hasn't been too much discomfort all day. Had a good meeting with one of the producers of my next project and got some good feedback.
Most important, though, is that I have sent out about 100 letters. I am surprised at how much of a weight has lifted off of my chest. I have just returned from dropping the envelopes in a mailbox and, man, I feel good.
So, like I said, it's turned out to be a real nice day.
I am looking forward to getting up at 5:30 tomorrow and driving to Pasadena for my first long run with the group.
Aloha
Wait a minute. Did I say 5:30?
Most important, though, is that I have sent out about 100 letters. I am surprised at how much of a weight has lifted off of my chest. I have just returned from dropping the envelopes in a mailbox and, man, I feel good.
So, like I said, it's turned out to be a real nice day.
I am looking forward to getting up at 5:30 tomorrow and driving to Pasadena for my first long run with the group.
Aloha
Wait a minute. Did I say 5:30?
You all know my Springsteen obsession. This song just came on and, well, it's just about one of the most beautiful songs I know. It was written during his turbulent "Tunnel of Love" days, so it may be more about his first marriage. However, it spoke to me as a parent and I hope to play it for Sophie and Jacob someday when they go off to college. Enjoy.
Aloha
WHEN YOU NEED ME
by Bruce Springsteen (found on the box set "Tracks")
When you need me call my name
'Cause without you my life just wouldn't be the same
If you want me come sunny skies or rain
When you need me just call my name
If you miss me, I'll be there
To brush the sunlight from your hair
I'll be there to guide you when trouble walks beside you
If you need me I'll be there
And when this dirty world has been cold to you
I got two strong arms waitin' to hold you
And when those mean days come along
We'll stand together and we'll take 'em on
So if you need me just call my name
When you need me call my name
'Cause without you my life just isn't the same
'Cause when this world kicked me around
You picked me up off the ground
So if you need me I'll be there
Aloha
WHEN YOU NEED ME
by Bruce Springsteen (found on the box set "Tracks")
When you need me call my name
'Cause without you my life just wouldn't be the same
If you want me come sunny skies or rain
When you need me just call my name
If you miss me, I'll be there
To brush the sunlight from your hair
I'll be there to guide you when trouble walks beside you
If you need me I'll be there
And when this dirty world has been cold to you
I got two strong arms waitin' to hold you
And when those mean days come along
We'll stand together and we'll take 'em on
So if you need me just call my name
When you need me call my name
'Cause without you my life just isn't the same
'Cause when this world kicked me around
You picked me up off the ground
So if you need me I'll be there
So, upon Julie's request, I have begun emptying out our email box. In doing so, I came across this poem Jan sent me last year. I'm not sure if I posted it back then, but here it is (again?). Enjoy
A Little Tooth
by Thomas Lux
Your baby grows a tooth, then two,
and four, and five, then she wants some meat
directly from the bone. It's all
over: she'll learn some words, she'll fall
in love with cretins, dolts, a sweet
talker on his way to jail. And you,
your wife, get old, flyblown, and rue
nothing. You did, you loved, your feet
are sore. It's dusk. Your daughter's tall.
From New and Selected Poems, 1975-1995, published by Houghton Mifflin, 1997. Copyright © 1990 by Thomas Lux. All rights reserved. Used with permission.
A Little Tooth
by Thomas Lux
Your baby grows a tooth, then two,
and four, and five, then she wants some meat
directly from the bone. It's all
over: she'll learn some words, she'll fall
in love with cretins, dolts, a sweet
talker on his way to jail. And you,
your wife, get old, flyblown, and rue
nothing. You did, you loved, your feet
are sore. It's dusk. Your daughter's tall.
From New and Selected Poems, 1975-1995, published by Houghton Mifflin, 1997. Copyright © 1990 by Thomas Lux. All rights reserved. Used with permission.
Feeling better this morning.
Jan Denman sent me a link to a neat Olympic site that details the "origin" of the marathon race. I thought I'd share it with you:
"The marathon was never one of the ancient Olympic events, although its origin dates back to another episode in ancient Greek history.
In the 5th century B.C., the Persians invaded Greece, landing at Marathon, a small town about 26 miles from the city of Athens. The Athenian army was seriously outnumbered by the Persian army, so the Athenians sent messengers to cities all over Greece asking for help.
The traditional origin of the marathon comes from the story how a herald named Phidippides ran the 26 miles from Marathon to Athens to announce the Greek victory and died on the spot. Phidippides was sent by the Athenians to Sparta to ask for help; a man named Eukles announced the victory to the Athenians and then died. Later sources confused the story of Phidippides, also called "Philippides," with that of Eukles. Although most ancient authors do not support this legend, the story has persisted and is the basis for the modern-day marathon.
The modern Olympic marathon is approximately 26 miles and usually takes over 2 hours for athletes to finish."
2 HOURS???? Bwa ha ha ha ha ha ha ha ha!!!!!!
Aloha
Jan Denman sent me a link to a neat Olympic site that details the "origin" of the marathon race. I thought I'd share it with you:
"The marathon was never one of the ancient Olympic events, although its origin dates back to another episode in ancient Greek history.
In the 5th century B.C., the Persians invaded Greece, landing at Marathon, a small town about 26 miles from the city of Athens. The Athenian army was seriously outnumbered by the Persian army, so the Athenians sent messengers to cities all over Greece asking for help.
The traditional origin of the marathon comes from the story how a herald named Phidippides ran the 26 miles from Marathon to Athens to announce the Greek victory and died on the spot. Phidippides was sent by the Athenians to Sparta to ask for help; a man named Eukles announced the victory to the Athenians and then died. Later sources confused the story of Phidippides, also called "Philippides," with that of Eukles. Although most ancient authors do not support this legend, the story has persisted and is the basis for the modern-day marathon.
The modern Olympic marathon is approximately 26 miles and usually takes over 2 hours for athletes to finish."
2 HOURS???? Bwa ha ha ha ha ha ha ha ha!!!!!!
Aloha
Thursday, August 12, 2004
I am an incredible crank right now. I had a tooth drilled out and a temporary crown put on this afternoon. Man, it seemed to take an eternity (which, of course, is impossible). Still, after three Novocain shots and an hour and a half in the chair, I can't feel my tongue and my face feels like a balloom. No, balloon.
It's been a miserable week as far as training goes. My nagging back has kept me limping and after I ran yesterday morning I seriously doubted whether I should do this marathon. Of course, that's not an option. After this marathon, though, I believe I will settle down and run 1/2 marathons. My body just can't take it and it's so damn discouraging.
Not that I want to be 20 again, but to have that body for just six months would be nice. Then again, if I were 20 again, I wouldn't abuse my body like I did. Hindsight is 20/20, right?
Posted a picture of Jake on the donation page. It's temporary until I get a picture of Sophie and Jake to put in its place. I want her face with his. She's in this with him... with us. I was glad to hear Julie express the same thing. The last thing I would ever want is for Soph to feel like all of the attention is on her brother. I would never do that.
Speaking of Miss Sophie, she admitted last night that she was nervous about kindergarten starting next week. I am really proud of her opening up and telling us how she feels. And it really helped her. This morning, she told Jules and me (at separate times) that she felt better now that she had talked about it. I don't want to jinx the future, but could this be a sign of things to come? I hope she always feels like she can tell us anything.
I have confirmed that my friend, Wes Stevens, will be running the marathon. I'm so excited that he's going to help us out. He wants to raise a lot of money. Let's hope that his friends will contribute to CF like they did to the AIDS cause last year.
Finally, I want to give a shout out to Ross Dinerstein and Sara Goldberg, the first two people to respond to my email letter. Ross went to the donation page and Sara gave me a check this morning. Thanks guys.
Only 14,900 dollars to go!
Have to go now and find my personality. Would hate to get home and be this way around the family.
Aloha
It's been a miserable week as far as training goes. My nagging back has kept me limping and after I ran yesterday morning I seriously doubted whether I should do this marathon. Of course, that's not an option. After this marathon, though, I believe I will settle down and run 1/2 marathons. My body just can't take it and it's so damn discouraging.
Not that I want to be 20 again, but to have that body for just six months would be nice. Then again, if I were 20 again, I wouldn't abuse my body like I did. Hindsight is 20/20, right?
Posted a picture of Jake on the donation page. It's temporary until I get a picture of Sophie and Jake to put in its place. I want her face with his. She's in this with him... with us. I was glad to hear Julie express the same thing. The last thing I would ever want is for Soph to feel like all of the attention is on her brother. I would never do that.
Speaking of Miss Sophie, she admitted last night that she was nervous about kindergarten starting next week. I am really proud of her opening up and telling us how she feels. And it really helped her. This morning, she told Jules and me (at separate times) that she felt better now that she had talked about it. I don't want to jinx the future, but could this be a sign of things to come? I hope she always feels like she can tell us anything.
I have confirmed that my friend, Wes Stevens, will be running the marathon. I'm so excited that he's going to help us out. He wants to raise a lot of money. Let's hope that his friends will contribute to CF like they did to the AIDS cause last year.
Finally, I want to give a shout out to Ross Dinerstein and Sara Goldberg, the first two people to respond to my email letter. Ross went to the donation page and Sara gave me a check this morning. Thanks guys.
Only 14,900 dollars to go!
Have to go now and find my personality. Would hate to get home and be this way around the family.
Aloha
Tuesday, August 10, 2004
The donation page is up and running. I'm pretty excited to see how it will work. There is a link on the blog, so... anyone reading this should test it out!
I'll try to work on the web page in my spare time.
Ran for about 20 minutes yesterday morning. I was still recovering from my very long weekend in which I spent Thursday and Friday nights (and early mornings) remixing "King's Highway." It's really going to be awesome once the remix of the entire movie is complete. Of course, I'll put up some kind of link when a trailer is online again.
I didn't run on Saturday, choosing instead to sleep in. Wise choice on my part. But I did not fully recover until sometime yesterday afternoon. I look forward to running tomorrow morning.
Sophie has kindergarten orientation yesterday morning and I took Jake to his gymnastics class. I don't know how much he really learns in this "class", but he enjoys jumping on the trampoline and playing with the parachute. Poor Soph came home from the orientation and was suddenly very ill. She couldn't keep anything down all day, not even water.
I'm glad to report that she's doing fine today.
Now that the online donation page working, I plan to send out a mass email, and finally get the letter out. That should all take place in the nest couple of days. Hopefully some folks will forward the email to family and friends and the donations will begin to come in.
Aloha
I'll try to work on the web page in my spare time.
Ran for about 20 minutes yesterday morning. I was still recovering from my very long weekend in which I spent Thursday and Friday nights (and early mornings) remixing "King's Highway." It's really going to be awesome once the remix of the entire movie is complete. Of course, I'll put up some kind of link when a trailer is online again.
I didn't run on Saturday, choosing instead to sleep in. Wise choice on my part. But I did not fully recover until sometime yesterday afternoon. I look forward to running tomorrow morning.
Sophie has kindergarten orientation yesterday morning and I took Jake to his gymnastics class. I don't know how much he really learns in this "class", but he enjoys jumping on the trampoline and playing with the parachute. Poor Soph came home from the orientation and was suddenly very ill. She couldn't keep anything down all day, not even water.
I'm glad to report that she's doing fine today.
Now that the online donation page working, I plan to send out a mass email, and finally get the letter out. That should all take place in the nest couple of days. Hopefully some folks will forward the email to family and friends and the donations will begin to come in.
Aloha
Friday, August 06, 2004
Sorry I haven't written in a couple of days. It's been a loooong week dealing with King's Highway and editing a reel for Tony. I don't think I'll be able to go to marathon training tomorrow. I really need to get some good sleep, especially since I'll be putting in another late night tonight.
The plus side to this is that we'll be done remixing the movie. It's doubtful I will get to sleep in tomorrow, knowing my children, but that's okay. At least I have the weekend to recover from the past three days and start fresh on Monday.
Besides, my left foot has really been bothering me today. I'm having problems walking on it.
That's all for now. Look for fresh entries next week.
Aloha
The plus side to this is that we'll be done remixing the movie. It's doubtful I will get to sleep in tomorrow, knowing my children, but that's okay. At least I have the weekend to recover from the past three days and start fresh on Monday.
Besides, my left foot has really been bothering me today. I'm having problems walking on it.
That's all for now. Look for fresh entries next week.
Aloha
Tuesday, August 03, 2004
It’s the Tuesday after the half marathon on Sunday.
What a great excursion up to the bay area this weekend. It was just a wonderful getaway. Chilly, but a nice change of pace.
We arrived in San Francisco in the afternoon on Thursday. The kids great in the drive up the 5. The portable DVD player has proven to be a worthwhile investment. The hotel we stayed at in the city was a Holiday Inn on Van Ness and California. Turns out it was at the end of the line for a trolley car, so we easily hopped on one of the trolley cars whenever we wanted.
Thursday night we rode down into the city and had dinner at Mel's Diner. We wound up turning in pretty early. That drive can take its toll. We were all bundled up in sweatshirts and pants. Since we've been experiencing one hundred plus degree weather in Santa Clarita, it was refreshing to feel a cool breeze. It really reminded me of Cleveland in late September, in which you wear a sweater in the shade, but have to take it off in the sun because you get too warm.
Friday was spent down at the pier. The marathon expo was there in front of the Ferry building. We all ventured down to check out the free handouts and to get my running number. After that, we got a ride on one of those bicycle rickshaws. The poor man pedaling for us (Australian, I think) earned his money. It was a little expensive, but better than waiting for a trolley and having to be abused by a homeless woman shouting obscenities at Sophie. Poor Soph didn't know what to think when this lady started going off.
They have a merry-go-round, so the kids and I took a turn on it. Jules and I were able to enjoy a bowl of chowder in a sourdough bowl, while Sophie ate cotton candy and ice cream for lunch and Jake stuck to soft pretzels. Hey, come on, we were on vacation. Sophie is a good eater, and we're just happy Jake will eat anything these days. Man, I've never met a more finicky eater, myself included.
After lunch we went to the Aquarium by the Bay. That was really neat. After a couple of tanks, there is a whole exhibit that is below the bay and you get to walk underneath schools of fish and exotic creatures that live in the bay. Sophie remembered the Leopard Shark. Once we left the Aquarium, me made our way back to the hotel. Sophie loved the trolley cars and desperately wanted to ride on an outside bench. S Since we thought this may be our last opportunity to ride the cars, we were happy to get a seat on the outside for the duration of the ride back to the hotel. She had this huge smile on her face the whole ride back and those big blue eyes were so wide-eyed as she took in the sights. Meanwhile, Jake kept us in stitches with his knock knock jokes and his infectious laugh. We ate in at the hotel, ordering too much food that we hardly touched.
Saturday we went to the Bay Discovery Museum, which is geared toward kids Soph and Jake's age. I think they really enjoyed the place. Lots of tactile things to do. There were a couple of neat climbing areas. Sophie loved the arts and crafts part, too. In fact, she said that was her favorite part of the day (and the trip).
That night we drove to see some relatives of Julie's (Bob and Linda Banfiel) for dinner. I thought it was really nice of them to have us over for dinner. They had just returned from a trip and their house is in a bit of disarray due to remodeling, but it was comforting to be around family.
That leaves us with the race. I had a great time running this half marathon. The weather was perfect for running. Mid-60's and drizzling. I woke up, anxious, at 5:45 am. This would have been great if I had to run soon thereafter, however my portion of the race did not begin until 8:45. So, I had to kill 3 hours. Never the less, this allowed me plenty of time to grab a taxi to the buses that would take me to my starting point.
I did not find the "up" hills all that terrible. They were more of a gradual incline followed by some leveling out. The down hills.... that's another story. There were a couple of steep drops that I thought were going to take my knees out. In fact, my left knee (not the one I've been using a brace with) started to ache terribly a couple of times during the run. Nut I thought this was a much more relaxed race than the Honolulu marathon. I was able to take in a lot of the sights and appreciate San Francisco. I fell in with a group that was running a 2:15 pace and a 7/1 run walk. So I stuck with that 7/1 run walk even after that group left me behind. I didn't bring my water bottle, choosing to drink water at each water stop (and walking through those stops as well). This worked out great. At no point did I ever feel dehydrated. By the very end, as I was passing the beautiful baseball park there along the pier, I started to get very hungry. That, and my legs (not my feet) aching were the two big things I took from this race and will address for the marathon.
The course I ran took me through the park by the SF zoo, into Haight-Ashbury and into some of the industrial areas. I would love to someday try the whole run. But it was an expensive trip, so I don't know when that might be.
It was such a great trip. And to come to the end of the race and see Julie, Sophie and Jacob cheering for me, that made everything worth it.
Aloha
What a great excursion up to the bay area this weekend. It was just a wonderful getaway. Chilly, but a nice change of pace.
We arrived in San Francisco in the afternoon on Thursday. The kids great in the drive up the 5. The portable DVD player has proven to be a worthwhile investment. The hotel we stayed at in the city was a Holiday Inn on Van Ness and California. Turns out it was at the end of the line for a trolley car, so we easily hopped on one of the trolley cars whenever we wanted.
Thursday night we rode down into the city and had dinner at Mel's Diner. We wound up turning in pretty early. That drive can take its toll. We were all bundled up in sweatshirts and pants. Since we've been experiencing one hundred plus degree weather in Santa Clarita, it was refreshing to feel a cool breeze. It really reminded me of Cleveland in late September, in which you wear a sweater in the shade, but have to take it off in the sun because you get too warm.
Friday was spent down at the pier. The marathon expo was there in front of the Ferry building. We all ventured down to check out the free handouts and to get my running number. After that, we got a ride on one of those bicycle rickshaws. The poor man pedaling for us (Australian, I think) earned his money. It was a little expensive, but better than waiting for a trolley and having to be abused by a homeless woman shouting obscenities at Sophie. Poor Soph didn't know what to think when this lady started going off.
They have a merry-go-round, so the kids and I took a turn on it. Jules and I were able to enjoy a bowl of chowder in a sourdough bowl, while Sophie ate cotton candy and ice cream for lunch and Jake stuck to soft pretzels. Hey, come on, we were on vacation. Sophie is a good eater, and we're just happy Jake will eat anything these days. Man, I've never met a more finicky eater, myself included.
After lunch we went to the Aquarium by the Bay. That was really neat. After a couple of tanks, there is a whole exhibit that is below the bay and you get to walk underneath schools of fish and exotic creatures that live in the bay. Sophie remembered the Leopard Shark. Once we left the Aquarium, me made our way back to the hotel. Sophie loved the trolley cars and desperately wanted to ride on an outside bench. S Since we thought this may be our last opportunity to ride the cars, we were happy to get a seat on the outside for the duration of the ride back to the hotel. She had this huge smile on her face the whole ride back and those big blue eyes were so wide-eyed as she took in the sights. Meanwhile, Jake kept us in stitches with his knock knock jokes and his infectious laugh. We ate in at the hotel, ordering too much food that we hardly touched.
Saturday we went to the Bay Discovery Museum, which is geared toward kids Soph and Jake's age. I think they really enjoyed the place. Lots of tactile things to do. There were a couple of neat climbing areas. Sophie loved the arts and crafts part, too. In fact, she said that was her favorite part of the day (and the trip).
That night we drove to see some relatives of Julie's (Bob and Linda Banfiel) for dinner. I thought it was really nice of them to have us over for dinner. They had just returned from a trip and their house is in a bit of disarray due to remodeling, but it was comforting to be around family.
That leaves us with the race. I had a great time running this half marathon. The weather was perfect for running. Mid-60's and drizzling. I woke up, anxious, at 5:45 am. This would have been great if I had to run soon thereafter, however my portion of the race did not begin until 8:45. So, I had to kill 3 hours. Never the less, this allowed me plenty of time to grab a taxi to the buses that would take me to my starting point.
I did not find the "up" hills all that terrible. They were more of a gradual incline followed by some leveling out. The down hills.... that's another story. There were a couple of steep drops that I thought were going to take my knees out. In fact, my left knee (not the one I've been using a brace with) started to ache terribly a couple of times during the run. Nut I thought this was a much more relaxed race than the Honolulu marathon. I was able to take in a lot of the sights and appreciate San Francisco. I fell in with a group that was running a 2:15 pace and a 7/1 run walk. So I stuck with that 7/1 run walk even after that group left me behind. I didn't bring my water bottle, choosing to drink water at each water stop (and walking through those stops as well). This worked out great. At no point did I ever feel dehydrated. By the very end, as I was passing the beautiful baseball park there along the pier, I started to get very hungry. That, and my legs (not my feet) aching were the two big things I took from this race and will address for the marathon.
The course I ran took me through the park by the SF zoo, into Haight-Ashbury and into some of the industrial areas. I would love to someday try the whole run. But it was an expensive trip, so I don't know when that might be.
It was such a great trip. And to come to the end of the race and see Julie, Sophie and Jacob cheering for me, that made everything worth it.
Aloha
Wednesday, July 28, 2004
Ran 7 miles this morning and felt strong at the end of the run. Ran the whole thing at a 6/1 pace until the last mile in which I didn't stop to walk. I'm thrilled. I haven't felt this strong in a long time. Not sure if it's the new shoes or the insoles, but I feel very confident about Sunday's race. Even the thought of running 3 miles uphill doesn't seem that bad. I must be losing my mind.
After a long drive to work (although I did rediscover Jeff Buckley's beautiful rendition of Leonard Cohen's "Hallelujah". I can't begin to describe how incredible I think Buckley's interpretation is. It's just him and his guitar. It begins in an ominous minor key then subtly changes into the major key and 6/8 time. You MUST check it out- and the rest of his album "Grace". Tragically, Buckley drowned several years ago ad never completed another album. But that's another story).
Where was I? Oh yes. Got to work and called Rebecca at the Cf Foundation and was shocked to learn that we're NOT involved with the Malibu Marathon anymore. However, we will be training for the Orange County
After a long drive to work (although I did rediscover Jeff Buckley's beautiful rendition of Leonard Cohen's "Hallelujah". I can't begin to describe how incredible I think Buckley's interpretation is. It's just him and his guitar. It begins in an ominous minor key then subtly changes into the major key and 6/8 time. You MUST check it out- and the rest of his album "Grace". Tragically, Buckley drowned several years ago ad never completed another album. But that's another story).
Where was I? Oh yes. Got to work and called Rebecca at the Cf Foundation and was shocked to learn that we're NOT involved with the Malibu Marathon anymore. However, we will be training for the Orange County
Tuesday, July 27, 2004
Good news, the letter is typed. I hope to send it out early next week after we return from San Francisco. I am now digging in and researching the Pay Pal method of receiving donations. My goal is to have all of that information ready to present to Rebecca at the Cf Foundation by the end of next week.
It's been a helacious week at work, but I feel great. I mean it. I woke up this morning more worn out from staying up late trying to catch a rebroadcast of former President Clinton's speech at the Democratic Convention than from my early morning run.
I look forward to my jog tomorrow morning. Can't believe we're getting out of town in two days. I'm really excited. I'll have to keep a written journal for a few days on the road.
Aloha.
PS I'm experimenting with all of the neat tools the blog site now has to offer.
It's been a helacious week at work, but I feel great. I mean it. I woke up this morning more worn out from staying up late trying to catch a rebroadcast of former President Clinton's speech at the Democratic Convention than from my early morning run.
I look forward to my jog tomorrow morning. Can't believe we're getting out of town in two days. I'm really excited. I'll have to keep a written journal for a few days on the road.
Aloha.
PS I'm experimenting with all of the neat tools the blog site now has to offer.
Monday, July 26, 2004
I can't believe it has been so long. However, the past couple of weeks have been very hectic both professionally and personally.
There are two important things I must update: I have written my first letter for the fundraising campaign, and this coming weekend I will be running the San Francisco Half Marathon.
Completing that letter was a big deal for me. I felt like it was hovering over me every time I sat down to write something else. In fact, the weekend I wrote it I had to begin a rewrite on one of my scripts (for some producers who optioned it... long story), but I felt I HAD to get the letter done. It just so happens that the day provided me with enough inspiration to put down into words what I have been feeling for the past couple of months. The whole process was very cathartic and I only need to type it up and mail it out. Easier said than done. However, that's my goal for this week.
My motivation that day was hearing about a girl I mentioned last year, Jessica Strisower, whom we met at a CF function I gave a speech at last year. This past winter, her condition was grave due to a deadly bacterium called B. cepacia. She caught the bacteria and it deteriorated her lungs so badly that she needed a lung transplant. Two live donors saved her life and now she has a bright future again.
The news that rattled me, though, was her doctors telling Jessica's mother that the lung transplant is only good for 5-10 years, and then she may die. The girl is in her early teens. She hasn't lived a full life! And of course, I grappled with the thought of Jacob ever having to face this news; how we as a family would face this news.
You can see where I was able to draw inspiration from this story. Finding a cure is more important now than it ever was. It is the ONLY way that people afflicted with CF will be given the same opportunities to live out their life like the rest of us.
And I don't buy into that crap like "well, you could walk into the street and be hit by a bus tomorrow". Yes, that type of tragedy could happen, but the odds aren't already against you in that situation.
I'm not trying to be a pessimist. Hardly. I'm just trying to drive home the pint to any of you out there trudging through my ramblings that this is serious business....
And then there was the half marathon.
We're leaving town on Thursday to go to SF in order for me to run the SF Half Marathon. I have to say that, physically, I feel great. I ran 8 miles on Saturday (after 12 last weekend) and my body has recovered splendidly. True, my damn knee continues to snap every time I walk, but I don't notice it when I'm in the middle of a run. I am really looking forward to the race. More importantly, I am thrilled that we're getting out of town for an extended weekend. Once Sophie begins Kindergarten (!!) in less than a month, the opportunities to skip town for a couple of extr4a days will be slim.
That's all for now. It feels good to be back at the blog. With my formal marathon training beginning a week from Saturday, I feel like I've done enough blog training to jump right back into the daily bore...er... entries like I did last year.
Aloha.
There are two important things I must update: I have written my first letter for the fundraising campaign, and this coming weekend I will be running the San Francisco Half Marathon.
Completing that letter was a big deal for me. I felt like it was hovering over me every time I sat down to write something else. In fact, the weekend I wrote it I had to begin a rewrite on one of my scripts (for some producers who optioned it... long story), but I felt I HAD to get the letter done. It just so happens that the day provided me with enough inspiration to put down into words what I have been feeling for the past couple of months. The whole process was very cathartic and I only need to type it up and mail it out. Easier said than done. However, that's my goal for this week.
My motivation that day was hearing about a girl I mentioned last year, Jessica Strisower, whom we met at a CF function I gave a speech at last year. This past winter, her condition was grave due to a deadly bacterium called B. cepacia. She caught the bacteria and it deteriorated her lungs so badly that she needed a lung transplant. Two live donors saved her life and now she has a bright future again.
The news that rattled me, though, was her doctors telling Jessica's mother that the lung transplant is only good for 5-10 years, and then she may die. The girl is in her early teens. She hasn't lived a full life! And of course, I grappled with the thought of Jacob ever having to face this news; how we as a family would face this news.
You can see where I was able to draw inspiration from this story. Finding a cure is more important now than it ever was. It is the ONLY way that people afflicted with CF will be given the same opportunities to live out their life like the rest of us.
And I don't buy into that crap like "well, you could walk into the street and be hit by a bus tomorrow". Yes, that type of tragedy could happen, but the odds aren't already against you in that situation.
I'm not trying to be a pessimist. Hardly. I'm just trying to drive home the pint to any of you out there trudging through my ramblings that this is serious business....
And then there was the half marathon.
We're leaving town on Thursday to go to SF in order for me to run the SF Half Marathon. I have to say that, physically, I feel great. I ran 8 miles on Saturday (after 12 last weekend) and my body has recovered splendidly. True, my damn knee continues to snap every time I walk, but I don't notice it when I'm in the middle of a run. I am really looking forward to the race. More importantly, I am thrilled that we're getting out of town for an extended weekend. Once Sophie begins Kindergarten (!!) in less than a month, the opportunities to skip town for a couple of extr4a days will be slim.
That's all for now. It feels good to be back at the blog. With my formal marathon training beginning a week from Saturday, I feel like I've done enough blog training to jump right back into the daily bore...er... entries like I did last year.
Aloha.
Thursday, July 01, 2004
Had a horrible run this morning. This thing with my left shin area is starting to irritate. Of course, it could be that I have to get off my lazy rear and finally go buy new shoes. This weekend. Yes, this weekend, when I plan to paint Sophie's room and possibly do the 135 other house things that need to get done.
The run this morning was slooooow. And when that happens, I begin dwelling on all of the things stressing me out. I also started thinking about my next letter. I have some of my thoughts scattered on pages, but nothing organized yet. But I want to get it out within the next two weeks. When I met with Rebecca on Tuesday and I looked down at the fundraising goals they want all of the runners to reach, I sudden;y got anxious. Can I raise the kind of money I did last year? Should it matter? I mean, the goal is just to raise money and awareness, right?
That's not true. Not for me. If my goal was just to raise money and awareness, I'd just run the half marathon. No, the goal is to raise as much as I did last year. The goal is to try and get people to understand how incredibly horrible CF is.
It was ironic that I found the About A Boy Soundtrack on a friend's iTunes list. There's a track on that record that rips my heart out whenever I hear it. For some reason, it was the song I latched on to when Jake was first in the hospital. It was the track I'd listen before I went in to Children's and when I left. I would be brought to tears, crying my eyes out as I tried to navigate Sunset Blvd.
It still chokes me up.
I don't want to lose my son.
The run this morning was slooooow. And when that happens, I begin dwelling on all of the things stressing me out. I also started thinking about my next letter. I have some of my thoughts scattered on pages, but nothing organized yet. But I want to get it out within the next two weeks. When I met with Rebecca on Tuesday and I looked down at the fundraising goals they want all of the runners to reach, I sudden;y got anxious. Can I raise the kind of money I did last year? Should it matter? I mean, the goal is just to raise money and awareness, right?
That's not true. Not for me. If my goal was just to raise money and awareness, I'd just run the half marathon. No, the goal is to raise as much as I did last year. The goal is to try and get people to understand how incredibly horrible CF is.
It was ironic that I found the About A Boy Soundtrack on a friend's iTunes list. There's a track on that record that rips my heart out whenever I hear it. For some reason, it was the song I latched on to when Jake was first in the hospital. It was the track I'd listen before I went in to Children's and when I left. I would be brought to tears, crying my eyes out as I tried to navigate Sunset Blvd.
It still chokes me up.
I don't want to lose my son.
Wednesday, June 30, 2004
Ran this morning and it felt very good. By the end I was feeling like I did before we left for Ohio. I have found my stride again. Met with Rebecca last night to discuss ways to try and get some more runners for the Malibu race. She wants to have a team of 10 running and raising money. I'd like to get that up to 15. But that's me, trying to push it.
Work was very stressful today and the combination of running this morning, staying up late to watch a John Landis directed documentary, and putting in a good 8 hours has whipped me. I just have to wash the nebulizers and boil them. Oh, and I have to avoid watching "The Age of Innocence" and getting sucked in. I love that movie. Scorsese rules.
What a ridiculous thing for a grown man to say. He "rules". Right on, dude!
Oh, and I have to pass along that Jake is fast becoming a pro on the potty. He now uses his little kitty potty most of the time (while sitting in the living room watching Scooby Doo, no less). He wears underwear most of the time. Someday he will read this and say, "Dad, why did you have to write that?" And of course, I'll say, "Because you RULE, dude."
Sad. I am very, very sad.
Aloha
Work was very stressful today and the combination of running this morning, staying up late to watch a John Landis directed documentary, and putting in a good 8 hours has whipped me. I just have to wash the nebulizers and boil them. Oh, and I have to avoid watching "The Age of Innocence" and getting sucked in. I love that movie. Scorsese rules.
What a ridiculous thing for a grown man to say. He "rules". Right on, dude!
Oh, and I have to pass along that Jake is fast becoming a pro on the potty. He now uses his little kitty potty most of the time (while sitting in the living room watching Scooby Doo, no less). He wears underwear most of the time. Someday he will read this and say, "Dad, why did you have to write that?" And of course, I'll say, "Because you RULE, dude."
Sad. I am very, very sad.
Aloha
Monday, June 28, 2004
The weekend was great, but hotter than hell, top say the least. I ran 10 miles on Saturday morning and I swear it was almost as hard as some of our longer runs last fall. Not that I'm in that type of shape again, but the last couple miles were tough. Nothing compared to my awesome run last week.
I blame the heat. By mile 6 I was feeling it in my legs. And my feet were starting to get hot. I am not sure how to remedy this problem. And it concerns me because there's no way to control how hot the pavement is going to be come race time.
I corresponded with my old friend Beth (from the Honolulu race). She ran the San Fran half marathon last year and says it was very hilly. Did I mention this already? If so, disregard the info. That's what you get for not writing every day. You lose track of you facts and so called insights.
I'm not too concerned about the hills. The pace I ran on Saturday was anything but top form. But Jules brought up a good point.... it's going to August and it will be hot. This may determine whether I run the first half or the second half of the marathon. Maybe the 1st would be better. At least I could avoid some of the heat, and we could get on the road sooner to get home.
Isn't that ridiculous. I'm training to run 13 miles and I'm more concerned at this point about when we get on the road to avoid traffic than I am about my performance.
The heat really wore me out the rest of Saturday. I mean, I was whipped. We went to the Santa Clarita Aquatic center and the kids played in this wonderful wading pool/ slide area. It was the perfect way to spend an afternoon out of the heat.
We received great news today that Jake's throat culture for pseudomonas came back negative. This is wonderful. Of course, now we're worried because he's taking swimming lessons and pools are a breeding ground for the bacteria. Have to very careful.
Tomorrow I have a meeting with Rebecca about the marathon. Not sure what we'll talk about. I hope we can come up with new ways to promote the donation process. My good friend Wes Stevens feels we should find a way to mimic what Aids Project LA does in which you can go to their website and donate immediately (upon receiving an email). Participants can also monitor their totals as their donations come in.
I believe this is a great idea. We just have to work out the logistics.
I ran this morning. Even though I was not into it, by the end of the 30 minutes I was glad I got out of bed to do the run. I will definitely ride the bike and do some yoga on the Fridays before my big runs. I definitely feel that not doing this cross training last week affected my performance on Saturday.
That's enough for now.
Aloha.
I blame the heat. By mile 6 I was feeling it in my legs. And my feet were starting to get hot. I am not sure how to remedy this problem. And it concerns me because there's no way to control how hot the pavement is going to be come race time.
I corresponded with my old friend Beth (from the Honolulu race). She ran the San Fran half marathon last year and says it was very hilly. Did I mention this already? If so, disregard the info. That's what you get for not writing every day. You lose track of you facts and so called insights.
I'm not too concerned about the hills. The pace I ran on Saturday was anything but top form. But Jules brought up a good point.... it's going to August and it will be hot. This may determine whether I run the first half or the second half of the marathon. Maybe the 1st would be better. At least I could avoid some of the heat, and we could get on the road sooner to get home.
Isn't that ridiculous. I'm training to run 13 miles and I'm more concerned at this point about when we get on the road to avoid traffic than I am about my performance.
The heat really wore me out the rest of Saturday. I mean, I was whipped. We went to the Santa Clarita Aquatic center and the kids played in this wonderful wading pool/ slide area. It was the perfect way to spend an afternoon out of the heat.
We received great news today that Jake's throat culture for pseudomonas came back negative. This is wonderful. Of course, now we're worried because he's taking swimming lessons and pools are a breeding ground for the bacteria. Have to very careful.
Tomorrow I have a meeting with Rebecca about the marathon. Not sure what we'll talk about. I hope we can come up with new ways to promote the donation process. My good friend Wes Stevens feels we should find a way to mimic what Aids Project LA does in which you can go to their website and donate immediately (upon receiving an email). Participants can also monitor their totals as their donations come in.
I believe this is a great idea. We just have to work out the logistics.
I ran this morning. Even though I was not into it, by the end of the 30 minutes I was glad I got out of bed to do the run. I will definitely ride the bike and do some yoga on the Fridays before my big runs. I definitely feel that not doing this cross training last week affected my performance on Saturday.
That's enough for now.
Aloha.
Wednesday, June 23, 2004
I have to say, some of my better ideas come to me late. Better late than never, though. I went out and purchase a knee support last night for my troublesome right knee. On my run this morning I couldn't really concentrate on what I was supposed to be accomplishing. I believe you could call it a junk run. I was so concerned about whether the knee support would do any good that I was distracted.
By the end of the day, I was full of energy, looking forward to tomorrow's run and I'm glad to report that the knee feels good. That is the most positive thing to happen in my training in the past month.
I must admit, I am a little nervous that my body will not permit me to complete the marathon this year. I am full of fears about the future of my legs. I hear of so many people having to have surgery on their knees, even having them replaced. I know from Julie's mom's experience that knee replacement is VERY painful. And the thought of not being able to run and use the marathon as a fund raising method really got me depressed yesterday.
I look at Julie an all that she does for Jacob during the day. She gives him all of his treatments and takes him to all of his doctor appointments. True, I have to work. But at least with the marathon I feel as if I am contributing to the battle. I know there will be other fund raising activities. But this one... the challenge of running 26 miles... and using that to inspire people to contribute... that is thrilling to me. And it makes me feel like I'm out there making a difference.
Perhaps this is too egocentric of me. But when I feel the aches and pains from along run I feel as if I can go on and face another day without breaking down and crying over Jake's CF. Believe me, there are so many days when I'm driving to work and I get that pain in my sinuses.... and I can feel the tears welling up. But I can control that when I think... I'm doing something.
I'm putting myself through this ordeal and I'm making a difference. We can win this battle... if only my legs hold up.
I need to run. I need the marathon. It gives me something to strive for. And it gives me hope. Hope in my friends and family. Hope in my fellow man. And hope that we're going to beat this disease.
Aloha.
By the end of the day, I was full of energy, looking forward to tomorrow's run and I'm glad to report that the knee feels good. That is the most positive thing to happen in my training in the past month.
I must admit, I am a little nervous that my body will not permit me to complete the marathon this year. I am full of fears about the future of my legs. I hear of so many people having to have surgery on their knees, even having them replaced. I know from Julie's mom's experience that knee replacement is VERY painful. And the thought of not being able to run and use the marathon as a fund raising method really got me depressed yesterday.
I look at Julie an all that she does for Jacob during the day. She gives him all of his treatments and takes him to all of his doctor appointments. True, I have to work. But at least with the marathon I feel as if I am contributing to the battle. I know there will be other fund raising activities. But this one... the challenge of running 26 miles... and using that to inspire people to contribute... that is thrilling to me. And it makes me feel like I'm out there making a difference.
Perhaps this is too egocentric of me. But when I feel the aches and pains from along run I feel as if I can go on and face another day without breaking down and crying over Jake's CF. Believe me, there are so many days when I'm driving to work and I get that pain in my sinuses.... and I can feel the tears welling up. But I can control that when I think... I'm doing something.
I'm putting myself through this ordeal and I'm making a difference. We can win this battle... if only my legs hold up.
I need to run. I need the marathon. It gives me something to strive for. And it gives me hope. Hope in my friends and family. Hope in my fellow man. And hope that we're going to beat this disease.
Aloha.
Monday, June 21, 2004
It's Monday. The past weekend was great. On Saturday I ran 9 miles and felt very strong. By the end I was able to increase to a 6/1 running ration. There's nothing better to get you running faster than having to get home so your wife can leave for a facial. Still, I felt great after the run.
The rest of the day was spent doing yard work. Nothing exciting.
Yesterday was Father's Day. It was a wonderful day. Julie let me act like a lounge lizard most of the morning and treated us to an awesome pancake breakfast, with some eggs and bacon on the side. Whew. I stuffed my face.
We went to Budd and Karyn's for dinner and spent some time in the pool. That really did my aching legs some good.
This morning I got up and ran for 40 minutes. My legs were tired, as usual on a Monday. I'm starting to get a little concerned about my right knee, the one I had operated on 20 years ago. There's some definite clicking going on. Clicking is bad. Real bad. I don't think there's any question that this will probably be my last marathon. I guess two should be enough in a lifetime.
This was a big day for the kids. Sophie began gymnastics and Swimming classes. I'm was a little concerned how she would do. We tried her in dance classes and swimming lessons in years past. But today, Soph did great. She's really starting to grow up. I'm always sad when I think about how fast she's growing up and how little time we seem to get to play together. I would hate to look back on her childhood with regret. I probably will anyway. The only thing that would make me a complete parent, in my mind, would be for me to get to stay home all of the time. Of course, we know that's not going to happen any time soon.
Jake had a CF appointment today and guess what: He's gained weight! And he grew 4 cm. He's actually in the 5th percentile now! That's really exciting. All of the medicines seem to be working. That news made my day.
It's been a gloomy June Monday for the most part, so that positive news about Jake is about all I needed to get me through the rest of the day.
Work has been busy, for a change. Finding time to write is going to be challenging. Alas, once I send my next letter out I will have to keep it up. I look forward to that challenge.
That's all for now..
Aloha.
The rest of the day was spent doing yard work. Nothing exciting.
Yesterday was Father's Day. It was a wonderful day. Julie let me act like a lounge lizard most of the morning and treated us to an awesome pancake breakfast, with some eggs and bacon on the side. Whew. I stuffed my face.
We went to Budd and Karyn's for dinner and spent some time in the pool. That really did my aching legs some good.
This morning I got up and ran for 40 minutes. My legs were tired, as usual on a Monday. I'm starting to get a little concerned about my right knee, the one I had operated on 20 years ago. There's some definite clicking going on. Clicking is bad. Real bad. I don't think there's any question that this will probably be my last marathon. I guess two should be enough in a lifetime.
This was a big day for the kids. Sophie began gymnastics and Swimming classes. I'm was a little concerned how she would do. We tried her in dance classes and swimming lessons in years past. But today, Soph did great. She's really starting to grow up. I'm always sad when I think about how fast she's growing up and how little time we seem to get to play together. I would hate to look back on her childhood with regret. I probably will anyway. The only thing that would make me a complete parent, in my mind, would be for me to get to stay home all of the time. Of course, we know that's not going to happen any time soon.
Jake had a CF appointment today and guess what: He's gained weight! And he grew 4 cm. He's actually in the 5th percentile now! That's really exciting. All of the medicines seem to be working. That news made my day.
It's been a gloomy June Monday for the most part, so that positive news about Jake is about all I needed to get me through the rest of the day.
Work has been busy, for a change. Finding time to write is going to be challenging. Alas, once I send my next letter out I will have to keep it up. I look forward to that challenge.
That's all for now..
Aloha.
Thursday, June 17, 2004
I feel like I finally have my head back together after returning from our Cleveland vacation. Although I ran a couple of times in Ohio (including an 8 mile run the day after we arrived!), I slacked off by Wednesday and wound up consuming mass quantities of beer and meat. My God, it seems like every meal has some kind of meat portion included when you sit down back there. Not that I’m complaining, but it starts to feel like the Python Spam sketch after awhile.
Our trip was excellent. I feel like each time we take a family vacation, it keeps getting better. We arrived on a Saturday without a hitch and quickly settled in to the Ohio vacation routine. Jacob was SO excited to see his cousin JF, he would run around the house calling out his name, “Gey-Eff!!” And JF was so patient with Jake. It was wonderful seeing them play together. Sophie LOVES being with her grandparents in Ohio and playing with JF and his sister, Gretchen. And all of the kids got along so well.
Highlights of the trip included a day at the movies seeing “Shrek 2” again and immediately heading on over to Chuck E. Cheese’s for pizza and video games. Beth and Zyg came up on Thursday and had dinner. I felt like that was a good night. It’s strange how Beth has settled into becoming a part of the extended Flynn family. All of the kids go off and play and because she knows everyone so well (I guess it has been 11 years), she just eases into hanging out with everyone.
I really admire Beth. She’s become very political and standing up for her beliefs. She and I think along the same lines of the political spectrum, although she may be a tad bit more liberal than I am. Good for her, though. We grew up in a semi-conservative family in which I was never really sure what my parents stood for. All four of us Malchus kids had to figure that stuff out on our own.
Speaking of politics, on that same day I had breakfast with Jan Denman, my high school senior English teacher, and an old friend. I haven’t seen Jan in a couple of years, though we have dropped each other emails throughout those past two years. It’s always a pleasure to just hang out with Jan. He had a profound influence on my life and to call this man my friend is seriously an honor. Jan taught me quite a bit about thinking for myself and about writing from the heart and not always worrying about the mechanics. In a lifetime, you probably can only call a few people mentors. To me, Jan will always be one of my mentors. I gave him a copy of “King’s Highway”. I hope it plays on his DVD player; otherwise he’ll have to wait for the release later this year.
Got to see Bob on several occasions. We hung out on his sister’s boat one night, and then he had a party that last Friday we were in town. Brian and Dan were both at the party. Dan and his wife, Jodi, also brought their precious daughter with them. I was pretty excited about seeing Brian. I haven’t spoken to him in some time. I was amazed when he brought up the blog and how often he read it.
It’s a tad intimidating hearing feedback about the blog. I tend to get self-conscious when I think about folks reading this thing. Still, I supposed to be a writer. I want people to read it. Duh!
Also at the party was a guy who co-starred in my senior film at Bowling Green. His name is Todd Meany and he’s a reporter for one of the networks in Cleveland. That was both exciting and a bit surreal. I haven’t spoken to this guy since the last month I attended BG. Isn’t it a trip when you get reacquainted with someone like that from your past? I believe I’ve detailed such encounters from last year in this very blog. Todd is very successful, and I was, I don’t know, somewhat envious of him and the success he has had. I have a difficult time promoting myself lately. I feel like I’ve been talking about “King’s Highway” for years… oh, wait, it has been years. I feel like people are hearing the same damn stories about the movie. So when I start to tell someone new about everything, my enthusiasm is a little bit lacking.
Have to work on that.
Saw Aunt Dorty and Uncle Ben and received a new Indian’s cap from them. It’s pretty stylin’ with the retro “C” from the 70’s teams (you know, when they were really dreadful). I think this is such an abbreviated rundown of our trip; it must not sound all that exciting.
I will say this: I really felt at peace on this particular vacation. I wasn’t restless to be somewhere and I felt like I had a lot of patience with the kids. That has not always been the case. In trips of past, I was a bit selfish about wanting time to myself and trying to push the kids off on their grandparents and cousins. I know, what a lousy father.
But it’s like I’m seeing them grow up so fast now. And as quickly as they are maturing, I am realizing that my time with them is running out. Soon, they’re not going to want anything to do with their cranky old man who will be barely able to walk. That breaks my heart. It’s bittersweet watching your children get older. You’re excited about them growing as human beings, but they leave behind those precious bits of childhood that are so special. The day that Jacob finally stops calling Sophie “Wo-wo” and calls her “Sophie” will be very sad (and I fear that day is close).
After returning home, I’ve returned to my running schedule. I’ve decided to move up to a 5/1 running pace. We’ll see how it goes.
That’s all for now.
Aloha.
Our trip was excellent. I feel like each time we take a family vacation, it keeps getting better. We arrived on a Saturday without a hitch and quickly settled in to the Ohio vacation routine. Jacob was SO excited to see his cousin JF, he would run around the house calling out his name, “Gey-Eff!!” And JF was so patient with Jake. It was wonderful seeing them play together. Sophie LOVES being with her grandparents in Ohio and playing with JF and his sister, Gretchen. And all of the kids got along so well.
Highlights of the trip included a day at the movies seeing “Shrek 2” again and immediately heading on over to Chuck E. Cheese’s for pizza and video games. Beth and Zyg came up on Thursday and had dinner. I felt like that was a good night. It’s strange how Beth has settled into becoming a part of the extended Flynn family. All of the kids go off and play and because she knows everyone so well (I guess it has been 11 years), she just eases into hanging out with everyone.
I really admire Beth. She’s become very political and standing up for her beliefs. She and I think along the same lines of the political spectrum, although she may be a tad bit more liberal than I am. Good for her, though. We grew up in a semi-conservative family in which I was never really sure what my parents stood for. All four of us Malchus kids had to figure that stuff out on our own.
Speaking of politics, on that same day I had breakfast with Jan Denman, my high school senior English teacher, and an old friend. I haven’t seen Jan in a couple of years, though we have dropped each other emails throughout those past two years. It’s always a pleasure to just hang out with Jan. He had a profound influence on my life and to call this man my friend is seriously an honor. Jan taught me quite a bit about thinking for myself and about writing from the heart and not always worrying about the mechanics. In a lifetime, you probably can only call a few people mentors. To me, Jan will always be one of my mentors. I gave him a copy of “King’s Highway”. I hope it plays on his DVD player; otherwise he’ll have to wait for the release later this year.
Got to see Bob on several occasions. We hung out on his sister’s boat one night, and then he had a party that last Friday we were in town. Brian and Dan were both at the party. Dan and his wife, Jodi, also brought their precious daughter with them. I was pretty excited about seeing Brian. I haven’t spoken to him in some time. I was amazed when he brought up the blog and how often he read it.
It’s a tad intimidating hearing feedback about the blog. I tend to get self-conscious when I think about folks reading this thing. Still, I supposed to be a writer. I want people to read it. Duh!
Also at the party was a guy who co-starred in my senior film at Bowling Green. His name is Todd Meany and he’s a reporter for one of the networks in Cleveland. That was both exciting and a bit surreal. I haven’t spoken to this guy since the last month I attended BG. Isn’t it a trip when you get reacquainted with someone like that from your past? I believe I’ve detailed such encounters from last year in this very blog. Todd is very successful, and I was, I don’t know, somewhat envious of him and the success he has had. I have a difficult time promoting myself lately. I feel like I’ve been talking about “King’s Highway” for years… oh, wait, it has been years. I feel like people are hearing the same damn stories about the movie. So when I start to tell someone new about everything, my enthusiasm is a little bit lacking.
Have to work on that.
Saw Aunt Dorty and Uncle Ben and received a new Indian’s cap from them. It’s pretty stylin’ with the retro “C” from the 70’s teams (you know, when they were really dreadful). I think this is such an abbreviated rundown of our trip; it must not sound all that exciting.
I will say this: I really felt at peace on this particular vacation. I wasn’t restless to be somewhere and I felt like I had a lot of patience with the kids. That has not always been the case. In trips of past, I was a bit selfish about wanting time to myself and trying to push the kids off on their grandparents and cousins. I know, what a lousy father.
But it’s like I’m seeing them grow up so fast now. And as quickly as they are maturing, I am realizing that my time with them is running out. Soon, they’re not going to want anything to do with their cranky old man who will be barely able to walk. That breaks my heart. It’s bittersweet watching your children get older. You’re excited about them growing as human beings, but they leave behind those precious bits of childhood that are so special. The day that Jacob finally stops calling Sophie “Wo-wo” and calls her “Sophie” will be very sad (and I fear that day is close).
After returning home, I’ve returned to my running schedule. I’ve decided to move up to a 5/1 running pace. We’ll see how it goes.
That’s all for now.
Aloha.
Thursday, June 03, 2004
It's the night before Sophie's Pre-School graduation. I can't believe there is even a ceremony for pre-school graduation, but we're very excited and so proud of her. She's growing up much too fast.
After that, we begin packing for our trip back to Ohio. I'm really looking forward to getting out of here for a week. It will be nice to hang out with Julie's family.
I have been running off the schedule I made up and following it very closely. I ran on Monday and yesterday. I chose to skip today and run tomorrow, instead, because I will be doing my long run on Sunday in Ohio. I've done Yoga on my off days and that has really been helpful.
Still, I am having some problems with my right knee. A couple of weeks ago I tweaked it after a long run. Now, it hurts to sit on my heels and have it bend in that degree. Of course, being a hypochondriac, I am scared that I have messed up something from the surgery I had on that knee....20 years ago! No wonder Julie thinks I'm a nut.
While I'm in Ohio I plan to start putting together the letter I'm going to send out this year. I have a pretty hefty task in front of me in trying to raise 13 grand. Maybe that number is too steep. I'm not sure right now. The economy is so unstable right now. I mean, who has any money to spare these days. I know that we don't.
God, I worry so much about money lately. Somehow we manage to get by and live comfortably. But for how much longer? It scares the shit out of me to think of not having enough money to cover our bills. Maybe "King's Highway" will become a huge seller once we complete the sound remixing.
Oh yeah, we found a distributor for the movie and we're in the process of remixing most of the post production sound for delivery purposes. I'm pretty excited about it. We all are.
On a sad note, our good friend Vill is back in Toledo. His father is seriously ill and they're unsure how much longer he may have to live. We he first found out about his father's condition, Vill was reasonably upset. I'm not sure how close the two of them are, but I know it must be hard. Our prayer are with him and his family.
I run tomorrow.
Aloha
After that, we begin packing for our trip back to Ohio. I'm really looking forward to getting out of here for a week. It will be nice to hang out with Julie's family.
I have been running off the schedule I made up and following it very closely. I ran on Monday and yesterday. I chose to skip today and run tomorrow, instead, because I will be doing my long run on Sunday in Ohio. I've done Yoga on my off days and that has really been helpful.
Still, I am having some problems with my right knee. A couple of weeks ago I tweaked it after a long run. Now, it hurts to sit on my heels and have it bend in that degree. Of course, being a hypochondriac, I am scared that I have messed up something from the surgery I had on that knee....20 years ago! No wonder Julie thinks I'm a nut.
While I'm in Ohio I plan to start putting together the letter I'm going to send out this year. I have a pretty hefty task in front of me in trying to raise 13 grand. Maybe that number is too steep. I'm not sure right now. The economy is so unstable right now. I mean, who has any money to spare these days. I know that we don't.
God, I worry so much about money lately. Somehow we manage to get by and live comfortably. But for how much longer? It scares the shit out of me to think of not having enough money to cover our bills. Maybe "King's Highway" will become a huge seller once we complete the sound remixing.
Oh yeah, we found a distributor for the movie and we're in the process of remixing most of the post production sound for delivery purposes. I'm pretty excited about it. We all are.
On a sad note, our good friend Vill is back in Toledo. His father is seriously ill and they're unsure how much longer he may have to live. We he first found out about his father's condition, Vill was reasonably upset. I'm not sure how close the two of them are, but I know it must be hard. Our prayer are with him and his family.
I run tomorrow.
Aloha
A more detailed entry will follow, but I had to write this down asap. Julie just called to tell me that Sophie was in the backyard standing by the kiddie rollercoaster we have there. And she was calling out like a carnival barker, "Step right up. One penny. We're raising money for anyone who has a child with Cystic Fibrosis. Step right up."
I think I'm going to cry.
I think I'm going to cry.
Thursday, May 27, 2004
Like I said, it's going to take some time to get back into the routine of writing. Let's consider this first week a warm up.
Yesterday was Julie's birthday and I spent the evening out to dinner with Beth who is in town for a convention. Hopefully Jules and I will get away for a little bit this weekend to have dinner together.
I ran hard yesterday, the first time I've really pushed myself in training this go around. Man did I feel it in my lower back this morning. Then again, it could be some other stress that I'm surprising. I'm no doctor.
I've been working on a 4/1 run walk ration, for any of you who are keeping track. I'm going to stick with that this year. I believe that switching my pattern of running effected my performance in the Honolulu race.
Sophie had her Kindergarten assessment this morning. She did great. I can't believe she's going to in kindergarten. Wasn't she just a little baby? Seems like eons ago. And Jake is growing up fast. The little nut can say his name, now (though he generally shouts it. "JACOOOB!!" His health has been good these past few months.
However, a throat culture earlier this year found psedomonas, a NASTY bacteria and he has been on a new medicine called Tobramycin (Tobi). He should run the course of his dosage while we're in Ohio in a couple of weeks. I pray that the Tobi has cleared his throat up. As it stands now, he is on 4 different breathing medicines that take 5 breathing treatments each day, in addition to his regular orals. He had a GI checkup on Monday and he gained 3 pounds! That's pretty exciting. For those of you who have children, 3 pounds may sound like nothing. For us, that's awesome.
Okay, I'm struggling to keep up here. I really feel like I'm just throwing things at the screen, hoping they'll stick. That's all for now. I'll do my best to keep on top of my entries. I promise.
Aloha.
Yesterday was Julie's birthday and I spent the evening out to dinner with Beth who is in town for a convention. Hopefully Jules and I will get away for a little bit this weekend to have dinner together.
I ran hard yesterday, the first time I've really pushed myself in training this go around. Man did I feel it in my lower back this morning. Then again, it could be some other stress that I'm surprising. I'm no doctor.
I've been working on a 4/1 run walk ration, for any of you who are keeping track. I'm going to stick with that this year. I believe that switching my pattern of running effected my performance in the Honolulu race.
Sophie had her Kindergarten assessment this morning. She did great. I can't believe she's going to in kindergarten. Wasn't she just a little baby? Seems like eons ago. And Jake is growing up fast. The little nut can say his name, now (though he generally shouts it. "JACOOOB!!" His health has been good these past few months.
However, a throat culture earlier this year found psedomonas, a NASTY bacteria and he has been on a new medicine called Tobramycin (Tobi). He should run the course of his dosage while we're in Ohio in a couple of weeks. I pray that the Tobi has cleared his throat up. As it stands now, he is on 4 different breathing medicines that take 5 breathing treatments each day, in addition to his regular orals. He had a GI checkup on Monday and he gained 3 pounds! That's pretty exciting. For those of you who have children, 3 pounds may sound like nothing. For us, that's awesome.
Okay, I'm struggling to keep up here. I really feel like I'm just throwing things at the screen, hoping they'll stick. That's all for now. I'll do my best to keep on top of my entries. I promise.
Aloha.
Monday, May 24, 2004
I am once again at the keyboard, updating on my marathon training. I am committing myself to run the Malibu Marathon this December, which will be co-sponsored by the Cystic Fibrosis Foundation.
It's the end of May and I have been training since May 3rd, two days after this year's Great Strides walk in Valencia. I had done some sporadic running throughout March and April, but I wasn't committed like I am now. Great Strides seemed like a starting point for the training and I am planning on tackling a half marathon in early August up in San Francisco. With this goal of San Fran in mind, I think I can better focus on the training and increasing my distances each week.
You can tell that this is my first new entry since the Honolulu marathon. I'm very tentative about what I'm writing. It feels very foreign to me (like it did the first few weeks last year). But, like I have fallen back into running with little difficulty, I'm sure making entries will become easier in a couple of days.
Aloha.
It's the end of May and I have been training since May 3rd, two days after this year's Great Strides walk in Valencia. I had done some sporadic running throughout March and April, but I wasn't committed like I am now. Great Strides seemed like a starting point for the training and I am planning on tackling a half marathon in early August up in San Francisco. With this goal of San Fran in mind, I think I can better focus on the training and increasing my distances each week.
You can tell that this is my first new entry since the Honolulu marathon. I'm very tentative about what I'm writing. It feels very foreign to me (like it did the first few weeks last year). But, like I have fallen back into running with little difficulty, I'm sure making entries will become easier in a couple of days.
Aloha.
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