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.

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

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



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?

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.


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

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

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.

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