Not a bad day, all things considered. But it was a tough morning with Jake being dropped off at pre-school. He cried, a lot. And Julie was in tears. It's not going to be easy. And he won't eat. That's the issue that stresses me out the most. I don't want him to be hungry. Is it a trust factor with other people? Is it his enzymes making his stomach upset? Is he just being a stubborn 4 year old? I don't have an answer.

The race is this Saturday and I don't have any nervous energy. Julie has complete confidence that I'll have no trouble. I wish I was that confident. Although I know I'll complete the race, how my knee will feel throughout the day may be another issue.

Still, it's going to be great to have so many family members to cheer us on. I only wish I could have raised more money. That's like the nagging part in my stomach right now. I'm not sure I tried hard enough to raise money this year. Maybe I started too late. Not sure.

I will be glad when it's over though. It's one of those things that's been hanging over me the past couple of months. Once the race is done, I can relax a little (and write some thank you cards) and focus on writing for awhile.

Of course, the Great Strides walk is right around the corner, isn't it?

Aloha

So I'm laying in the middle of the living room with a two ton elephant standing on my chest, wondering, "How did this day turn so dark so fast."

Sophie's party last night was wonderful. She and her little girl friends all had a great time. At times, the laughter and screaming was like a group of banshees... But in a good way. A fun way. Julie did a fantastic job entertaining them most of the night. I checked in and kept Jake occupied with "Spider Man" on the mini DVD player.

Then, after waking up around 6 am, they played for another good four hours. Amazing, the amount of energy they had. Finally, I took Sophie to see "Lion, The Witch and the Wardrobe" with Max, Zach and Kyra (who had come down the mountain for the party).

So how did I end up curled in a ball in the living room? Well, I shouldn't have done the bills. The hoolidays have caught up with us. I get so stressed about money and I sometimes feel like it's a boulder I can;'t get out from under. I just feel so much dread and I'm tired of it. I tired of being so stressed. I'm tired of being bitter. But most of all, I just so damn tired of being scared.

Julie is torn about sending Jake to pre-school beginning tomorrow. He's nervous and I know that she is very sad that he's starting some kind of schooling away from home. Their lives will never be the same. It will never be just the two of them alone all of the time anymore. Even as I write this, I'm wiping tears away because it means that Jake is getting older.

There's a part of me that wants him to always remain our little boy. But there's also this part of me who wants him to grow up. I want Jake to grow old, to be a hundred. It's a defiant part of me. I want to prove all of these CF experts wrong. And I want to prove it to them sooner than later. I want him to grow up to be stronger and healthier than they ever could have expected. That's the optimistic side of me. That's the part of me that prays for the best. And then there's the other side... the darker side...

Maybe it's the reality of the race being this week and I'm just being sensitive. I'm burnt out. I need to step away from the big fundraising for a bit and get some perspective. But doing that will bring the guilt. Guilt that U''m not doing enough. Guilt that I should be helping find a damn cure. I hate the guilt, almost as much as I hate the dread.

Tonight, it's a no win situation. I'm going to have to go to bed and curl up next to Jake and pray for his little body to stay strong and healthy forever.

Aloha.

It’s Sophie’s birthday. 7 years. How did that happen? When I watch her, she’s grown up so much, maybe more than a typical 7-year old should be asked to. And yet, she still has her little girl ways. While she plays games with her dolls and feed them bottles and gives them naps, she still sleeps with a blankie and can’t get through the night in her own bed.

The picture is one of my favorites from when she was a lot younger.

I still recall the events surrounding her birth. Julie and I spent the day and night before she was born in the hospital. Jules had been dehydrated from a bout with the flu the day before and her doctor wanted her admitted to get fluids back in her body. When Sophie’s heartbeat wouldn’t stabilize, the doctor decided to induce labor. That was a long day, and I wasn’t the one in labor. Julie was miserable. How do women do it? She got no sleep, was in agonizing pain, couldn’t lie down for very long, and there was nothing good on television (that’s a joke).

The next day (the 5th), the doctor visited and determined that Julie had a partial Placenta Abruptio and that she wanted to do an emergency cesarean section. It was hectic, scary, and confusing for a couple of hours, but in the end, Sophie was delivered and in our arms in recovery.

Budd, Karyn and Max were there. My mom and Dad drove in. And Julie’s brother Michael (who, at the time, was living in California) was on hand as well.

The night, after our family left the hospital, Julie and I were getting ready to try and sleep, I happened to look down in Sophie’s cradle and noticed she was having difficulty breathing. Earlier that day, the same thing had occurred and our nurse instructed me on how to help her cough up some of the saliva she’d swallowed. After several attempts, she wasn’t getting any better. Like the hand of God was there with us, our nurse happened to check in before she left for the night. She took over for me, and after two attempts, she ran out of our room calling out “I‘m taking this baby to the ICU.”

After a moment to let this sink in, I wandered away from my bedridden wife to find the ICU. I remember walking blindly down the long white, sterile hallways and an eternity passing before I found the secured doors for that room. You have to buzz into this room and when I spoke through the intercom my voice sounded like someone else’s. This wasn’t happening to me. She was just born. The doors swooshed open and a nurse intercepted me, leading me into a small waiting area. However, I caught a glimpse of the doctor and nurses gathered around my tiny infant, working furiously to revive her. What must have been five minutes felt like five hours. A television was on in the background. I sat there staring at it, not knowing what to do... not knowing how to act. One thing that never entered my mind, though, was whether she’d live or die. She couldn’t die. I wouldn’t let her.

Finally, the doctor came in and was very pleasant. “She gave us quite a scare”, he told me, with a slight smile on his face. He must have been happy to save a life. He led me to Sophie, who was now on monitors and in a special, Plexiglas case. This wasn’t real. Those baby classes never brought up this scenario. I looked down at her helpless little body and was numb.

I returned to Julie’s side and we prayed together. I prayed all night. Was it a heart defect? Were her lungs all right? At exactly midnight, the clock in our room stopped. We both froze. I raced back to the ICU to make sure all was well. Sophie was still fine. It didn’t sink in until I called my brother to tell him what happened. As soon as he heard my voice he excitedly asked, “What’s happened?”

I lost it and could barely get the words out. Sophie nearly died.

The next morning, we went to ICU and she was doing well. Sadly, they began her on a series of antibiotics that needed to run their course over 10 days. So, we were unable to take her home with us that day or the next week. We would make round the clock trips to the hospital to feed her (even in the middle of the night). And she responded wonderfully. When we finally got her home to our 2 bedroom in North Hollywood, the path to parenthood felt complete. We truly were a family.

In a strange way, what happened with Sophie prepared us for what we would go through when Jake was born.

I sometimes wonder if the ordeal she went through changed her or affected her in some way. I know it altered my view of how fragile life is and how we need to appreciate the loved one’s and good fortunes we all receive. Sophie is a special little girl with an enormous amount of love to share with everyone. I love her dearly and I am so proud to be her daddy.


Happy birthday, Sophie.

Here is my follow up letter...

January 2, 2006

Happy New Year!

It's hard to believe the holiday season has come and gone and that the Carlsbad marathon is just a few short weeks away on January 15th. There is still plenty of time to contribute if you haven't yet had a chance. Hopefully, the weather will hold up and the race conditions will be relatively pleasant.

So far, we've raised $4000 and my goal of $7000 is definitely achievable. I hope you'll once again consider helping to find a cure for CF and putting an end to this horrible disease.

There are two ways to contribute.

Send me check made out to the Cystic Fibrosis Foundation.
22331 Los Tigres Dr.
Saugus, CA 91350

Or, you can go online and make a contribution at this website: www.active.com/donate/cffcmla/team-malchus

As I've said in the past, any donation is greatly appreciated by the entire Malchus Family and all of the other families affected by cystic fibrosis.

Thanks for helping out!

Sincerely,
Scott

Another morning in which my intentions to go riding were thwarted by responsibility (plus, it's pretty damn cold out there). Up at 6:00, I was dressed and ready to go when I thought the morning through a little more clearly. Julie had to get up and get going in order to take Jake to a pre-school meeting. If I'd gone riding, she would have had to done breathers, get Sophie ready and get Jake ready primarily on her own. Oh well, I guess I'll ride tomorrow. At this point, I'm not sure how much more I can do to prepare for the race. Either I'll be able to endure the 13 miles, or I'll collapse in a pool of my own tears.

Aloha

I cried last night. It’d been awhile since I broke down and prayed to God. Funny how art can pull things out of you that you’re aware are swimming under the surface, but you have been able to keep at bay. After watching a heartbreaking episode of Deadwood, the phenomenal HBO western series, I was so affected that I couldn’t stop the tears from coming.

In the episode, a main character’s son dies, tragically. Though, is it anything else but a tragedy when a child dies? This boy’s death was sudden, violent and unexpected. However, it made me too aware of my own son. My Jake.

Maybe because it was late, or because I was up, alone, at 12:30, but the tears came and I was overcome with the need to drop down and pray. I haven’t been the most religious man in a couple of years. Those lingering pangs of anger caused by cystic fibrosis and the how’s and why’s continue to hold me back. But last night, it was all I could do to hold back… to beg for mercy.

But that’s the thing… what can God do? Jake’s illness is progressive. It’s not going to go away unless a cure is found.

Lately, he’s had a more noticible cough. Julie says she can hear a difference in the sound of his cough. At first, I couldn’t. But by the end of my vacation, I noticed it too. It eats us up inside. In some way, he’s gotten worse.

You do everything you can, within reason, means and energy to make sure your child is healthy. We are good parents. Ahh, but that’s the thing about it, no matter what you do, CF is going to continue to attack his body and he’ll gradually get worse.

Remember my resolution to smile more? It’s hard at times to do that when this monster is creeping around your child, latching on to him.

I cried last night. Not the first time. Definitely not the last.

It's New Year's Eve and we're all kind of veggin' until heading over to Budd and Karyn's tonight. Last night, Jules and I went out for Sushi to celebrate our 12th Anniversary. Lame ass Scott forgot to get a card. Julie got me 2. Hopefully, the roses I bought today will make up for moi's lameness.

I can't say that I've been a great trainer. It's been pouring rain today, so my plans to even go for a walk were put aside. The knee's feeling creaky with all of the moisture in the air. Still, I feel confident that come race time, I will have enough enthusiasm and nervous energy to get through the race. That, and a lot of Advil. At year's end, we have raised $4000. I feel great about that. $5000 is definitely achievable. That's still a lot of money. And whatever Beth brings in will give Team Jacob a huge boost.

So, that's all for 2005. Hope everyone has a safe New Year (whoever you are that are out there reading this.

Aloha

The end of the year is upon us and I am feeling better. No, I'm not running again. I have begun riding my bike regularly in the morning just to keep my legs happy. I'm also walking a couple of mornings (and taking the stairs at work). Not really sure how much this will keep me ready for the race in a couple of weeks, but I'm not giving up yet.

So far, we have raised over $3000 this year. I was unsure whether we would be able to generate the $10K we did the past two years. I began the fundraising much later. And with the two major disasters that struck the world in the past year, I was concerned that folks would not have as much to donate. Still, that $3000 is pretty darn good, all things considered. Oh, there's still time. I have to write a follow up letter to send out early next week. And then I just concentrate on the race.

I received a wonderful letter of support from my friend, Phil Sprague. Phil and I go back to high school (and for a while, people would confuse us... I say a while, but it was probably a week). Anyway, he told me that I shouldn't feel guilty if I couldn't run the race; that me being healthy for the family is more important that running 13 miles. And then he ended it by saying that as far as he was concerned, the Sprague family would be making a donation to the CF Foundation every year whether I ran a race or not.

Man, is that cool or what?

We went up to the Gardners' house the day after Christmas and my leg really felt like crap. As I limped about, I expressed my fear of what was wrong with my knee to Tony. He pretty much reiterated what Phil wrote. Family fist, Malchus. If you can't run, don't mess up your body.

Well, I am putting family first for this last race. Jake. After Carlsbad, I'm done running.

That said, I have started looking into bike races for a possible future fundraiser.

Aloha.

PLEASE DONATE!

I am not sure what I am going to do come January 15th. Whatever it is going on inside my knee is pretty much inhibiting me from being able to run. I woke up this morning, motivated to go out and run for four miles. But I didn't get 50 yards before I knew that it wasn't going to happen. Not today; maybe never again. This is the biggest let down I've had. To not be able to go through with it... it's not an option. I have to run this thing. I made a commitment that other people for which other people are sponsoring me. To not run it would make me feel like a fraud.

And yet, there is also a sense of relief. For weeks I have questioned whether I would be able to run. And now it seems the decision has been made for me.

My only other option is to cross train the next month and hope that I retain whatever muscle memory I have to gut it out in January. Oh, I know I'll be able to run the 13 miles. It's not an issue of endurance. It's just the pain, man. That phrase, no pain, no gain? It's a crock. That's what they preached to me in 8th and 9th grade when I was still playing football. And that's the mentality that helped me shred the ligament in my knee in the first place.

So, tomorrow I will take my bike in to have it repaired and starting Monday, I'll ride my bike in the morning. It's the only thing I can think to do.

You know, I could easily just not run this thing. But I would feel like a fraud. And I've put in the time, you know?

In other events, Mom and Dad are coming into town in Sunday. The kids are stoked. I'm not sure when we will see them next, so I feel like this will be a pleasant visit before my holiday break. I am really looking forward to the time off from work. This year has had so much going on. And I feel like this will be the perfect winding down of the year to reflect on all of the events of the past year and to just appreciate this wonderful family we have.

Aloha

So here I am again. I've returned. It's been a depressing couple of weeks. My right knee has really been troubling me and I was very discouraged about being able to run the half marathon. Add to the mix some of my own personal dramas and you can see why I haven't been to the blog in awhile.

But I'm back to finish what I started. The half marathon is a month away and even if I can't complete my training in full, I WILL run that race in January. I put in too much effort, and too many people have stood behind me and supported me.

The last long run I had was two weeks ago and I was quite happy with the results. 10 miles in just over 2 hours. Not bad. But the rest of the day was painful. My knee was in a lot of pain all day, pain that carried through to Tuesday. No Advil could take away the pain. I took the next week off and I just ran for the first time this morning. It was only 25 minutes, but I felt strong. That is, until I got to work and the pain flared up again.

Not sure what I am going to do. I don't think I can put my body through this for another month. And I do plan on seeing a specialist. However, like I said, I will run that race. I'm just not sure how that day in January is going to go.

Aloha

Thanksgiving was really joy this year. Although the sadness of Kathy's death was felt by all, I really thought there was less stress than usual. All of the families had a wonderful time. We played football! I haven't done that in 12 years. I think it was the most enjoyable football game I've had since high school. Of course, I tweaked my knee and have been feeling a twinge ever since. I chose not to run Friday or Sunday, hoping the pain would subside. For the most part, I feel okay. I do get those occasional bouts of fear that I won't be able to walk in ten years or so. Have to push those aside... at least for another month.

Donations have begun to come in. I am happy to say that we've raised over $1000 so far. I'm not sure how much we'll raise this year. Every small bit counts, especially in a year that has seen two major catastrophes in the world.

I've been having some hard days lately. I think about the future and hate that I don't feel optimistic. I want to cry out to the world that my son is going to beat the odds... but there is a crushing feeling in my gut... another voice keeps saying the opposite. I hate myself for feeling this way. I hate myself for admitting these fears and feelings. I want to be full of hope. But too often, I just want to cry and say "why him? Why Jacob?" And I get pissed off at God and want to shout from the roof tops "Take me instead!"

But it doesn't work that way, now does it? I am so thankful for the hope and optimism of our family and friends. They lift me up... they lift us all up. Maybe it's the weather. I hate the cold. Or maybe I'm just feeling weak and useless. I can't fix Cf. I don't have that power. And soon, my body won't allow me to punish it anymore. Then what? What can I do that will inspire people to donate to this cause?

That's the real challenge. Keeping other people involved and supporting the search for a cure. I don't know how Julie can read about the effects of the illness and not be more downtrodden. Me? I feel like I'm betraying our family just writing these feelings. But you all have to know what it's like. You have to know about this rollercoaster. And don't feel sorry for me. Feel sorry and say prayers for the people with CF. They're the ones who need you.

Have to go now.

Aloha

Ran those 9 miles and man was it a mixture of toughness and just the will to finish the run. The first half, I almost didn't think I would finish. As I turned the corner to the my last half of the run, I wiped out and slammed my shoulder on the cement. Man, that hurt. I toughed it out though and I'm really glad I did it.

Still, not the most enjoyable morning. I was wiped out the rest of the day.

I've given up coffee for awhile (again). The past week I've felt so drained by the end of the day. Even now, at the end of my work day, I'm feeling so much more energized.

Big day for American Standard. There was an announcement in The Hollywood Reporter. Got my name in there and everything. Pretty damn cool. If I do say so myself.

That's all for today.

Aloha

Been a tough week getting motivated to run. Lots of issues dealing with the whole writing thing. I know, stop complaining, right? Today is the last day of shooting for American Standard. That's pretty darn exciting. Let's all hope it turns out as great as we hope it can. After working a month on a project with Wes' friend, had to ditch it because there is an exact duplicate project going on with a big studio. That's been the frustrating and depressing element of the past couple days. Sometimes, being a writer sucks.

So, with the thought of having to come up with some new ideas, plus trying to thing of a plot for Soulless 2, I didn't run very long this morning. That's not good, since I have to run 9 miles this Sunday, Man, am I going to be hurting come Monday morning.

We've raised 800 dollars so far, which is pretty good all things considered. Not sure how much we'll end up raising this year. I started LATE and it's been a rough year for people financially. I received a great letter from a former co-worker, Lindsay Rogers. He used to work with me at Klasky Csupo and was a constant ray of support and optimism. The envelope was decorated by one of his daughters (at least, I assume it was one of his daughters). On it, there was a circle around the words Cystic Fibrosis with a slash through the words (think Ghostbusters). How thoughtful that they took the time not only to write a kind letter, but to show support and enthusiasm with the artwork. I think it is very touching.

Jake is on Pulmicort for a month, in place of his dosages of Cromolyn. Pulmicort is a steroid. He was put on it because he's had a cough every time he gets really excited (like running or, especially, when Sophie makes him laugh REALLY REALLY hard). I can't tell you how painful it is to write that he even has a small cough. I don't want to have these symptoms of Cf. I know that's selfish because there are so many kids sicker than Jake, but it's how I feel.

I've said this before, but it's worth repeating. You live your day in this sort of vacuum. A routine forms and the constant reminder of the illness kind of gets placed away somewhere where you don't collapse from angst and stress. But the moment you acknowledge that something has changed... that something may be getting worse... it's a little devastating. And a piece of you crumbles.

Running 9 miles suddenly seems like nothing.

Woke up to run on Sunday but the Santa Clarita Marathon had all of my regular running paths closed off. Decided to head home and spend time with the family. On Saturday, the kids and I prepped all of the letters and sent out 90. Each letter included two magnets. I also sent 120 to Beth, leaving me with around 200... or so I thought. Spoke with Dave this afternoon and he still has 500 more magnets. Yeesh.

Have to get up and run tomorrow and get back into the swing of things. I only have to run 6 miles this weekend, so I'm not too concerned that I missed last weekend. I nearly did 9 the previous weekend, so I believe I'll be fine.

Jake seems to have worked through most of his cold. He does have a little cough, though, which concerns us. Julie called the clinic this afternoon.

Heading home soon.

Aloha

Did a long run on Sunday. 8 1/2 miles , maybe a little more. Turns out I only needed to do 6 miles and 8 this weekend. Perhaps I should pay attention to my training schedule. Nevertheless, I was very pleased with myself because I was able to switch up to a 4/1 run walk ratio half way through the run. When I was done, though... Oh boy, were my legs sore. Can getting older really mean this much pain?

speaking of getting older, yesterday was my birthday. The day began really nice, but then something turned while driving to work. I listened to some Springsteen and having that alone time in my car made me reflect on my age, what it means for CF patients, and how much I love my family. I was crying by the time I arrived in Burbank and never quite recovered until the end of the day.

Steve sent me some nice emails. Can't believe he remembers my birthday each year. I'm so lame to forget his. Well, I don't forget it. I just miss it... which may be worse. I mean, plan ahead Malchus.

In the end, I got home and the kids sand me a rousing version of the "Bear in the Blue House" birthday song, and I couldn't stop smiling. I am so lucky to have these two little ones love me so much. So often, I don't feel like a great dad. But I can see in their eyes that I'm doing an okay job. And Jules made a tremendous lasagna. After the kids were in bed, we just cuddled. I had told her about my stress, and she really helped me relax and comforted me.

Don't know if 36 is significant year, but I'll remember this one.

Got up and ran this morning, but only managed 20 minutes. I think that knowing I wouldn't have to increase my mileage this week allowed me to slack a bit.

The letter is written./ The magnets are in (and look awesome...thanks Dave.) Everything gets shipped this weekend. Hopefully the emails will go out sooner. No promises.

Aloha

So the new routine of Wednesday/Friday seems to work. I got up at 5:30 again this morning and was out by 6:20. Decided to reverse my route to mix things up. Boy, it really played a trip on my head. By about the third mile, I started anticipate[anticipating when I would reach my next landmark. And when another jogger passed me, I really got anxious, just like a real race situation.

Turned out to be a good thing, though. I worked through the anxiety and ended with the same time I would had I run the regular route.

Great news to pass on: I am now officially a paid writer. The American Standard began filming this week and I got the check today. I can't describe how accomplished I feel. Feels great. Now, on to the next one.

That's all for now.

Aloha

Yesterday's run was pretty good. It began a little slow and I wasn't sure if that had to do with it being 6:30 on a Sunday morning, or my own weary body. But I was amazed that by mile 6 I felt great and even considered extending the run past 7 miles. I'm glad I did not. My shoes, on their last legs, are shot and my legs were killing me all day.

While running, I also came up with a new plan. I think that next year I'll run in the Santa Clarita Marathon/1/2 marathon instead of whatever run the Cf Foundation is involved with. Not only will it be less hassle, but the training will end before Thanksgiving and I can use the holidays to recoup instead of stressing over missed long runs.

On another level, it feels appropriate to have the training and fundraising culminate so close to Jake's birthday (the SC Marathon is in early November). So, that's the plan for next year, Until then... Carlsbad here we come.

Aloha

Had an awesome run this morning. 4 miles is just under 45 minutes. Woke up at 5:30 (not entirely by choice) and got out of the house around 6:10. The weather was cool, but not so cold that I needed sweat pants, like Wednesday. As I circled back toward home, the sun broke over the horizon and the sky came alive with a glowing yellow and orange hue. The trail I ran lead behind a subdivision and huge stacks of woodchips sat off to the side of the pavement. Steam rose from these sweet, woodsy smelling masses, reminding me of oversized dung heaps.

As more light came upon the day, I was amazed to see my breath. Was it really that cold out? I hadn't felt this good running in a long time. Maybe it's Beth becoming a part of the team and feeling a challenge. Maybe it's me just getting my ass in gear, finally. Not sure, but it felt great to bee running.

Got to work and Dave had emailed me the proofs for the magnets. We should have them in a couple of weeks. They look great. Sophie's design is wonderful.

Something about a good run in the morning. Puts me in the right frame of mind to have a good day.

Aloha

So, it's great to see that Beth has made an entry. Very exciting to me.

Had another one of those moments this morning. Jake asked how old I am. I said, "I'm 35, Jake." He said, "I'm 34, Daddy." The cuteness of that exchange was ruined in my head when the first thing that came to mind was the mediaan age of people afflicted with Cf.

Even an innocent moment with my son is ruined by this disease.

Aloha