10 Years For Jake

Ten years. A celebration when good things happen, no so much when the celebration is sad.

Every year I try to figure out what to post.

Every year, I feel a need to remind you all of how important it is to not "miss it"
(Reference, the film  "Hook" 13.5 minutes in) 

When I get feeling down, usually about once a day, although I am admittedly doing better,  I always think of Jake and Anne, "Up there somewhere" looking down at me somehow telling me, expecting me to enjoy the life I have been allowed to keep. Reminding me that they tried to keep theirs to their very last breath

Life is precarious, we are just flesh and blood and we break. Accidents happen, things change in an instant. Don't waste your life. Do not forget about the loved ones, friends and pets that love you and want to be a part of your life. MAKE YOUR LIFE.. DON'T WASTE IT!

Last night, I watched a clip that moved me and started me writing this post.

I would ask you  to watch it. It's only 5 minutes long. Watch it, think about it.
I went back and forth about whether or not to post this on the blog, whether it was relevant or appropriate and I almost did not, but I kept feeling the push as I always do on these days. Maybe the push was from Jake and Anne. I don't know, but I think the message reinforces what I am talking about.
Life is a library. We only borrow the stuff we think we own. All we really keep are the friendships, relationships and our own personal experiences. The legacy we leave are the lessons we have taught others, to live a happy life and appreciate each moment while we have it.

https://www.youtube.com/watch?v=nKd2QVrQVIM&feature=youtu.be


and for those that would like to look back and remember, here also is Jake's memorial video:

https://www.youtube.com/watch?v=NbonEVCEHJY&t=28s

I never thought I would have a blog to remember one child much less two children, but I do.

This blog is now  a memorial for both Jake and & Anne

Anne left us two years ago today after a long battle with breast cancer.
I miss them both horribly. I miss their personalities. I miss being their Dad

I am fortunate to know many other children (Now most of them adults), but to me they are my kids including:
Alex (of course), Reese, Jade, Joelle, Nick my little granddaughter Heather and others that I am able to affect and influence in a positive way.

I also have many other people that I am able to help and influence in different ways.

They have saved me.

This year and every year following, I would only ask that the holidays bring these people and others to me  or me to them for nothing more that a nice day together.
Individually or separately, I don't care.

As we get older,  we realize that mostly the things we long for are most times just that....things.
I never saw a UHaul  on the back of a hearse.

We live in a library, and all the stuff we collect we really are just borrowing, to be given to someone else when we are gone or thrown away completely.

All that matters is Family, Friends and Pets.

So this year and the years following, when the holidays come and you are stressed because you're trying to figure out or afford  what to get for people... instead, plan a day with them. Not a hour or a lunch,  aim for a day.

Not because you have to... because you don't. Not because you should....

Do it for yourself, to remember when life seemed simpler and getting together was something you did when you were younger and didn't have the worries and stresses you have now.

Anyone can buy socks, But you cannot buy lost time. When it is gone, it is gone. You can, however create new memories so that when you see these people you can "remember when."

Take it from someone who knows....twice. What I have left from Jake and Anne are memories...great memories and no regrets of time not spent, only that I can not spend more time with them now.

I challenge the world and would look forward to good reports of the great times you had, the old memories you remembered and the new memories you create.

To honor my beautiful daughter who left us far too soon, here is her memorial video:

https://www.youtube.com/watch?v=SI9N5b4ErkM&t=3s

Happy Birthday Jake 2017

Today, I celebrate what would have been Jake's 29th birthday. Unlike January 9th when we lost him to cancer, today is a celebration of the honor and responsibility we were given to raise a child and help turn him into an excellent human being. As with my other two children, we succeeded beyond our wildest expectations.

In the wake of our second loss, my daughter Anne to cancer last year, it is difficult to stay focused and not miserable but to honor our children for their  unceasing fight against cancer, I continue to choose to do my best to lead a happy life and remember the good times I was blessed with. Today is, as I say a celebration of one of the three best days of my life, the other two being the birth of my other children Anne and Alex. I feel thankful that I was given these gifts. I often recall what my beautiful niece Teresa (Reese) told me once:

"To have lost so much, you must have had a lot"

Most Wednesdays, I watch my granddaughter Heather and many times during the day I reflect on how lucky I have been to have had children, and now a grandchild, something so many never get to experience.

I also am thankful for the younger people I have had the honor to affect as a father figure including my lovely niece (daughter) Teresa, Joelle, Zack, Jade, Lex, Lacy, Austin, Jason and probably others.

I was meant to be a father. It is the best job in the world.

Happy Birthday Jake!

Here is something funny to remember:

https://youtu.be/W6ypsspnTpA

7 Years And It's Still Surreal

Not much to say that I have not already said except to sum up:

Everyday people die that shouldn't while we question the lives of those that survive and do not bring anything but fear sadness and hatred to the world

Let Jake's life be a shining example of the way we should all try to live.

Fight to make every day count
Keep a smile on your face
Make jokes
Find the good in the world.
Don't dwell on the bad
Be the nice guy
Do for others... just because
Talk to old friends, keep in touch with family and spend time with others
Remember that all that matters is today... this moment

Yesterday is history,
Tomorrow is a mystery,
But today is a gift - that's why they call it the "present."

Many told me when Jake died that they kept a picture of him by their bedside so as to remember the person who never gave up and smiled in the face of circumstance. It helped them when they were having a bad day.

My brother Dale asked Jake once how he did so well dealing with the sickness
Jake said "Cancer has no conscience, it gets who it gets"

As human organisms we live life walking on a tightrope, we are frail creatures that have mortal bodies. All it takes is a small slip and it is all over.

Remember this each and every day. When you are having a bad day, decide whether what you are upset about is really worth your time. There really is not a lot that matters

Think of people like Jake who never gave up and always smiled. This is his legacy.

In memory of Jake here is the video I will post every year for the rest of my life.

Have a GOOD DAY! That is what would make Jake happy.


https://www.youtube.com/watch?v=NbonEVCEHJY

5 years

Well, lets see what I can do to put a positive spin on the celebration of the worst day of my life.
Strange, a year or 5 years is really just a point of reference, but it still seems to hurt more on these days.

I flew back from Boston yesterday. Got to the airport at 7:30 for my flight at 9:30.  6 hours later I was still in the airport as the maintenance crew had long given up on fixing the 7th flight computer that would not respond as the pilot said to "Ctrl -Alt - Delete".

I was upgraded to 1st class (cool), seat 5A (window seat...cool) and was able to pretend I was one of those people who actually should be in 1st class  rather than walking by the 1st class people imagining them saying to me in detest "If you only worked harder you could be sitting here instead of in coach".

I sat down in seat 5F on the opposite side of the plane, because I don't always notice details like this, until the person who was supposed to be in 5F informed me that I was in his seat. I started to get up to move and he said "Don't worry, I'll sit in your seat." A small little detail that I did not think much of until I was two hours into a conversation with a woman named Leslie who ended up sitting in 5B. This poor woman had just found out seconds before  entering the plane that her father would probably be dead before she reached him in Bakersfield. She had grabbed the first available flight when she heard the news and instantly apologized for how miserable she was about to make me for the next 4.5 hours of the flight.

"That's alright" I said and after a moment, bit the bullet, and informed her that I was about to celebrate (a strange word for today's occasion) the 5th anniversary of the loss of my son and that I had a good understanding of how she felt.

The next 4 hours were spent talking about Jake and her father, and in the end we were both better for it. I won't speculate as to how this chain of events put me next to someone I needed to talk to and who also needed to talk to me but I made another friend in this world and that is a gift that has come out of the tragedy of Jakes death. Jake, still making a difference in my life.

This morning, I am on the way to work and I feel that Jake is sitting next to me helping me through this day. Even so, I miss him terribly. I miss everything about him, but as usual, my friends and family will hold me up and keep me going for another day.

Speaking of friends and family, it is long overdue for me to give thanks to my family and friends who never cease to listen to me whine and complain.

So in the tradition of the Academy Awards (go figure)  here goes:

I apologize in advance for anyone I missed. I will probably end up editing this post because the list is endless

For outstanding achievement as best supporting friend the winners are:

Pat "Tish" Crawford for transforming our yard back into a thing of beauty so Jake had something nice to look at while he was in treatment and for the barbecue the Crawford's hosted to help raise money to send us to India for new treatments.

My sister Pam and her husband  Mike  who arranged a First class flight to India complete with reclining bed seats

William Shatner, who took time out of his busy schedule filming Boston Legal to talk to Jake and give him a Captain Kirk send off to India.

Dr. Kim, who managed Jake's care in the United States

Dr. Sibia, his wife and everyone at the Sibia medical center who was more than a doctor but a friend. Who took so many moments out of his busy day to talk to me and who one day said "Want to go follow the elephant that just walked down the street?"

Tim Harker, who brought pizza to us in the Duplex at least 3 times a week

Marcus "Felix Leiter" Allyn, who always made time for lunch to talk to me

Philippe Lavaud, my old roommate from LA who called me constantly

The Borundas, Ron and Michelle who helped us constantly

The Inzano's who did the same

Derek and Tracy Scallet, who said, "Here, have some money for  your India trip. You can work it off later" and have made me a part of their family

My little brother Jack, who to me is the closest thing to another son. The Robin to my Batman and my oldest play friend

Merri, Jacks wife who herself  lost two brothers and constantly listens to me whine.

Robert Sands, who helped us with Hyperbarics and positive motivation

Linda "Winnie" my sister, who visited and made Jake laugh.

My mother Joanne "Get Teda" Weinstein, who treated Jake as good as she treats me

Kate Pastel, who helps me constantly deal with the loss of my businesses, house, marriage and Jake, who herself  lost her daughter, by telling me life stories that help me cope.

My Dad, my alter ego who keeps me laughing and can now say I love you out loud

Frank Maldonado, a newer friend of mine who also lost a daughter and whom I have spent countless hours with as we help each other deal with each new day

Patrik Lawrence, a young man who I have mentally "adopted", who makes my story of loss seem like a ride at Disneyland

Marty "McFly" Schoeder, who is like another little brother of mine.

Judy Pastel, my new found friend, cousin and "sister"

My brother Jim, who everyday goes through similar worry and turmoil with his own sick son who somehow has knowledge beyond his years.

My brother Dale "Angel Tay" whose help and support is indescribable. From medication help to counseling with doctors, to financial support and just being the best big brother, I cannot begin to detail.

Dale Beck, one of my oldest friends who constantly helps me cope and finds new distractions for me

My children, Anne, Alex and Teresa who give me a reason every day for living

Heather, my new granddaughter, who looks at me and seems to say:
"Papa, we have a lot of playing to do and a lot of movies to watch...so keep focused"

Marci Pastel, who helped me create this incredible kid.

Everyone else who took the time to take Jake out to coffee to get to know him as more than just Dan's son.

and finally.....

Eric Fish, who never faltered for even one day to stand by and support Jake. Who slept on the floor in his room. Who was always there no matter how difficult it got. Who is like another son to me.

Pamela Vann, who opened her home and her heart to me and my family. Who spent countless hours with Jake at endless hours of the night and to this day is one of my finest friends.

Marshall Crawford. My best friend. The finest person I have ever known, who every day in the last 5 years calls me to be sure I am OK. Who has picked me up from the floor crying and held me like a personal Teddy bear. The finest human I have ever had the pleasure to know. Who right now is telling me to shut up.
I doubt that many people are blessed with a friend like this but those of you who have the gift of knowing this man know what I mean.

I am sure I missed quite a bit of you but you are not forgotten. It is my friends and family that keep me alive, along with Jake who somehow seems to show up at the right time in my life and help me and others.  It is a good feeling for me to know I am loved by so many. I am a very lucky man.

And now, as usual, here is the video...

http://www.youtube.com/watch?v=NbonEVCEHJY

Moments

Well, it's November 15th, Jake's birthday. Today he is 25 years old, at least in some way, universe or somewhere, Even if wherever he is does not measure time, I am pretty sure he is very happy and even so, misses me and others just like we miss him. But I feel like he is okay, actually pretty good somewhere... Somewhere,  because unlike many who seem to know at least in their own mind or opinion where people go, if I am honest with myself (and I always try to be) I just don't know where that is....but I know it is good.

I think he continues to have an effect on me, probably, definitely more that I can realize and somehow, he helps me get through life. I can't prove it and it really is not up for debate. It is just the way I feel, and I have moments of feeling real good. I also have moments of feeling real bad... but I have moments of feeling good.

I got a temporary job the middle of this year that requires me to travel a couple weeks out of each month. It is a huge departure and a polar opposite to what I ever expected my life would be. A couple of weeks out of each month, sometimes up to 3 at a time, I am gone, Away from all family and friends. Occasionally, the opportunity arises that I might work in a town that is near someone I know and I get to visit them which is great and a gift.

Currently I am in Northern California which is unusual and the first time I have worked in my home state. On this trip I have been able to visit my old roommate Philippe, my sister Linda, and spend an awesome evening with my friend Pam's daughter Joelle

As I say, working at a job like this is a huge departure from what I ever expected my life would be...family man...wife and kids...."Hi honey, I'm home! For me, I feel that it is sort of like being an astronaut. Usually I am completely alone. I leave San Diego on a plane (my spaceship) and travel to a town (a planet). I do not know anyone from that town (civilization), I work during the day with people I have previously never met (Aliens) and will likely never see again. I eat at places I will likely never go to again. At the end of the week, I say goodbye to these people I have worked with all week. As they thank me for the time spent and walk out the door, I say goodbye and to myself  think "Have a nice life, nice to know you, Ill never see you again."  Then I pack up my equipment, return to my hotel, gather my belongings and leave the next day on the plane (my spaceship) for either the next destination...or home (re-entry).

Most of the time it is a fairly isolated experience and a constant emotional change..going from being a resident of San Diego to an astronaut isolated from anyone I know till I  "Splash-Down" back in San Diego and become a resident again... until the next journey.

As I say, it is not what I ever thought I would be doing in my life, but it is where  I am today, and it has MOMENTS which is what I wanted to talk about today. Good moments, bad moments, and bad moments with good endings.

Several months ago I was finishing a job in Kentucky. My next job would start in two days in Tennessee.  I finished the Kentucky job on a Friday and began the drive from Kentucky to Tennessee. Usually I would be flown from location to location, but it this case it made more sense to drive. Since I had never driven to a location that was this far away, had only the GPS on my telephone for directions and have really never gotten over seeing the film "Deliverence", I decided that it would be a good idea to leave very early. That way in case I got lost or the car broke down I would not be in the middle of nowhere with my "purdy mouth"

The road to Tennessee was very heavily wooded, surrounding me with trees and fallen leaves. The sun was just barely breaking through the morning fog which was thick. The rays of the sun pierced through the fog and back-lit the leaves. The scene was suitable for framing.The type of setting you would see in a movie (go figure),  and I felt the need to have musical accompaniment, so I selected James Taylor. Turned out the only two albums I had on my memory stick was  "One Man Dog" and  "October Road" which actually made sense because it was close to October and I was on a road. Would have been really cool if it was October right? But it was September... Hey guess what? The first song on the album and the one that played was "September Grass"

I immediately found myself transported to another place. Hard to explain that place. Some combination of my surroundings and perfect music, but it was one of happiness and peace. Not an overwhelming sense of happiness and, not an overwhelming sense of peace, but some calm combination of the two where for the time being sadness could not get in. I realized this sense, this moment and said to myself,  "This is a good moment". Then I tried to get sad. I tried to bring it on and I could not make it come..and it was wonderful and peaceful.

This peaceful feeling lasted throughout the entire album all the way until the very last song "Have Yourself A Merry Little Christmas".  When this song came on I thought, "OK it's way too early for a Christmas song but James does such a nice job I think I will listen to it anyway. By the time this song had started playing, I was leaving the heavily wooded areas and traveling on a long desolate two lane road. And of course being me, I said to myself, "Hey, I'm kind of like a guy in a movie traveling home from a road trip to see his family! Like he's been gone for days and he is almost back home where he will be greeted by his family. At that time this verse played:

Precious friends who are dear to us
Gather near to us once more
I know that
In a year we all will be together...

... and then I got sad, and I was traveling on a lonely road by myself realizing I would not in fact see Jake again for Thanksgiving. At least not the Thanksgivings I am going to.
I started to spiral down emotionally. It was like the end scene from "Hook" where Robin Williams who  had finally realized he is Peter Pan, not Peter Banning. But then Captain Hook who has him trapped and is about to kill him says:"

Your not really Peter Pan, you're  Peter Banning - a cold, selfish man who drinks too much, is obsessed with success, and runs and hides from his wife and children

I continued to plummet down into a lonely sadness. I was in a town thousands of miles away by myself... alone. Not traveling to see my family, but working on a job I never thought I would be doing.
Alone on an empty road spiraling down

And then suddenly in front of me, a deer appeared from out of nowhere and began to run across the road . I slammed on the brakes to slow down and the deer stopped... and looked at me.
For a moment it was just the two of us. Just me and the deer. Both of us made direct eye contact... just for a moment... then he was gone. And somehow...and I don't know how, I just think Jake was at least partially responsible for putting the deer in my path at that moment. Somehow he is around watching his family and stepping in when it is really necessary to remind us that he is OK and that things are OK.
This morning I decided to proof read this post before publishing it. I logged onto the Internet and the page went directly to a picture of Jean Claude Van Damme a person I had not seen or heard mention of since Jake died. He was advertising a new You Tube Video. Jake used to love Jean Claude Van Damme, not because his movies are great, but because he knew I could not stand to watch them and therefore he liked to punish me by making me watch them with him. When I saw the page I smiled. Strange, that being the first web page I see after logging onto the hotel... and it made me smile...another moment.

Several months ago, I was talking to my brother Dale ("Angel Tay"). Talking to him about how I was sad and how life just did not turn out like I expected it would for me.

 He said " I know Dan, I think that life is pretty difficult. But in between the difficulties we have moments. Moments of good times and happiness.  And we have to realize these moments while we are in them because they are short and sometimes gone before we know it. Then  we are back to the struggles and hard times. That's what life is".

Life is moments.Some longer than others some shorter. Moments like the drive through Kentucky and the moment with the deer and the moment with Jean Claude.

If we are lucky, we get quite a few good moments in our life. If we are even luckier, we realize at that time that we are in a moment and stop thinking about other things that distract us from it. If we can do this we can enjoy that moment at it's fullest. Otherwise we end up minimizing  or missing that moment completely.

Yes, life is full of moments and I am having them,  realizing them and appreciating them. I think this is called living.

Happy Birthday Jake.. I love you

January 8th The Day Before

Four years later and it's almost here again. It has been hovering steadily behind me. I can't see it, but I can feel it. The Day. That day I will think about every year as it comes up. It's kind of like a piece of elastic tied to my shoulder hovering right behind me. Almost like an aura. If I try to get ahead of it I can...for moments. Then the elastic pulls in and the pain goes right past me and stares me straight in the face. Happily, I have done better with it this year. Like my grief counselor said, the sharpness of it will become less. Happy memories are now greater than unhappy memories. I actually can look at pictures and begin to watch some old videos and smile at the good times and what a wonderful boy he was and still is...somewhere.

Quote from the movie Rabbit Hole:

Becca: Does it ever go away? 
Nat: No, I don't think it does. Not for me, it hasn't - has gone on for eleven years. But it changes though. 
Becca: How? 
Nat: I don't know... the weight of it, I guess. At some point, it becomes bearable. It turns into something that you can crawl out from under and... carry around like a brick in your pocket. And you... you even forget it, for a while. But then you reach in for whatever reason and - there it is. Oh right... that. Which could be awful - not all the time. It's kinda... not that you like it exactly, but it's what you've got instead of your son. So, you carry it around. And it doesn't go away. Which is... 
Becca: Which is what? 
Nat: Fine, actually. 

Yep, somehow, I like having the brick. 

Things to do. I have been watching a friends house for a couple of days and as I sat down to write this, their white dog Bailey is sitting next to me with a look that is saying

"Look, I know you have problems but it is the morning and you need to feed me right now!"

I look back at him and say to myself, "Hey, It's only 7:30. You usually don't eat till 8 so don't look at me that way."

 Of course then I give in immediately and feed him because no matter what happens in life we still have things we need to get done. We always have things we need to get done.So to all of those who go through similar situations, some worse than mine, some less, I say...keep moving. Keep moving, keep working, keep trying. I am still trying to work my way out of the Rabbit Hole. For Anne and Alex, always know that I love you so much. I hate the idea that I feel compelled to write in this post, but I am glad that I don't have to write it about you guys.
Now, everyone take a moment and call the people you care about and let them know just how much. 

November 15, 2012

Today is Jake's birthday, he would be 24 today. For me he IS 24 today, growing up in a different place.
I got up after laying in bed for about 45 minutes thinking. The evening had it's usual nightmares, not clear enough to remember, maybe not even about him. Just a low level tenseness with pieces of memory flashing by and some moments of extreme sadness and still of course, disbelief.

I lay there in bed there wondering what to do with this day. Live was the answer. Live and be happy. Today is a day of celebration for me. A celebration of the excitement and thrill, and appreciation of the gift I was given 24 years ago. One of my 3 finest gifts, the other two being Annie and Alex. I am so lucky really. I have been given so much, and while it hurts so bad, so much of the time it is the loss that really makes me appreciate the gifts. Not that I want it that way, I would much rather be much less appreciative and have Jake alive, more than just in my heart and wherever he is. But it is the loss that has made me appreciate my children and my life even more.

I still remember, standing by the Will Call shelf at Captain Video when I got the call. My wife telling me we are going to have a baby today and that I needed to get to the hospital. In my typical fashion, I thought immediately of Rob and Laura Petrie from "The Dick Van Dyke Show" and at that moment I was Rob. I immediately lost all my calm and walked in circles wondering what to do next.

Jake did not show up till the next morning,  24 years ago today but I will always remember the moment I held him in my arms. I remember him crying and I looked at him and said "Hi Jake" something I had done every day to his mom's stomach for 9 months. He stopped crying immediately. I knew then for sure he would be my buddy. Just like Annie was, going with me everywhere, constantly falling asleep in the shopping cart at the market against my hand, or Alex who still will lean over on to me to this very day when we watch a movie, and hug me, or fall asleep against me. I have some great kids, some great gifts. Now I watch people around me that are just starting out, whose children are infants or toddlers and it makes me so happy to see the love they have for their children. I see it in their eyes, I feel it in the air. It is the gift that I was given. I really have led a charmed life.

I have equated my life to a series of television shows (big surprise). Small moments in time with great happiness and great sadness. "Dan as a Child", "Dan as a Teenager"  "The Dan & Marci Show,  "The Duplex" and the show I am currently involved in which is still running.
Each of these series have had a lot of episodes, some good, some not so good, but If I look back at each series, I can honestly say that there were far more great episodes than bad ones. A lot of people do not get the chance to be in so many good shows. We have to appreciate and remember these shows, especially the good episodes because that is what life is, a series of small moments in time, and they can be gone before we realize it. Don't think of your life as one long life. It will be filled with all kinds of adventures, lots of short stories. Appreciate them and find the good in each story. If you look at your life as one long story, you will continually long to reach some sort of  happy ending. but life is full of small happy endings, short television episodes. Remember the episodes. The Dan & Marci Show will probably, most certainly be my all time favorite show because this show starred Me, my wife and my kids. There was no greater cast. It was the Seinfeld of my life and will never be duplicated. I had some of my finest moments and most difficult times in it.

A lot of you are in a similar show right now, your Seinfeld. Live in the show and enjoy each episode aware that it could get cancelled. That way you will enjoy each episode. It is the loss, whether through passing of time or through disaster that gives us the balance and the appreciation of what we have.

I miss Jake. Every single day. Every single day. But today is his birthday, a celebration of the gift I was given. 20 years of heaven on Earth was given to me in the form of a child.
I love you Annie and I love you Alex my other two  gifts I am happy to be your Daddy.
And thank you too Marci for these gifts.

Happy Birthday "Jake-Old"

Love "Dan-Old"

November 9th 2012

I have been feeling the need to write lately. A lot of things happening in my life while at the same time not a lot of things happening. Financially, I am pretty much the same. Still trying to eek out a living that is consistent enough that I can get back out on my own. Unfortunately that is not yet happening, but I continue to send out resumes and do a variety of side work from I.T. to video production. I am fortunate that I know how to do a lot of things.

At times I feel somewhat obsolete. Technology has changed significantly since 2005 when I had a thriving repair business, and worked as a programmer for a computer dating company. The products I used to repair are now pretty much disposable and the dating company has been replaced by social networking. It seems to have had a somewhat negative toll on my self esteem and I struggle to  not feel useless.  I am learning to deal with it and  push on hoping for a new break. I feel like it is going to happen soon, I don't know why but I just feel it.

Several months ago while doing some I.T. work at a clients, I happened to meet a very interesting gentleman. He is mostly blind, struck by an illness called low grade glaucoma . He was left with significant tunnel vision. An avid tennis player he somehow is still able to play tennis even though it is difficult for him to do anything else without assistance. Simple activities such as walking down the street must be done with an assistant.

His story is located at this link:
http://carlsbad.patch.com/articles/nearly-blind-carlsbad-resident-plays-tennis-daily-video#video-11766852

We struck up a conversation and he told me that he had also lost a child. His daughter died at the age of one and one half possibly due to SIDS. When he told me this I felt an immediate connection. Perhaps because I knew that he could feel and understand the way I felt about losing Jake. Here was someone who went through the loss of a child just like me.
In talking to him, I found out that he had written a few novels and had been hoping for years to get them edited and published. He also was interested in starting a blog. The problem with doing any of this was  his lack of vision which made writing an impossible task.
As he spoke to me my mind was already thinking ahead. I thought maybe I could help this man and perhaps he could help me. Because of my technical and creative skills perhaps I could use technology to help him get some of his dreams accomplished.
I talked to him about the possibility of setting up voice to text dictation wherein he could talk and the computer would type for him. This made him very excited and we decided to meet at his house later that week. When he left, I started to feel nervous thinking "What am I getting myself into? I need to worry about myself now not anyone else!" However I knew that helping others is always the right thing to do and as they say when you give, you get back, at least that's what they say.

So, I showed up at his house and we tried to setup  vocal dictation using voice dictation software. The idea was sound, but there was an aspect of my idea that I had not thought to consider. Because he was from Puerto Rico he had a strong accent and although he spoke English very well, the software could not learn his dialect. Additionally, it was hard to train the software because he could not read the text that  the software needed to hear to learn to recognize his dialect.

So we decided to go into manual mode and I helped him create and update his blog. We became instant friends. There was some type of kinship we shared that was more than just the loss of a child. Our senses of humor were similar as were our values and we just hit it off. After we finished the blog we decided to start editing one of his novels which he called THE Interview. The basic idea behind it was four reporters that get the chance to interview God and ask him so many of the questions we all would like to know, all of the whys.
I would meet at his house every Monday and Wednesday for two hours each day and we would edit the book. And this is where the magic started to happen. We just kept becoming closer friends. Part of the book was based on his life which was full of heartache and sadness. He was able to successfully intertwine some of his life experiences into the story  and allow the reporters  to ask God  questions. Questions that I ask day after day such as "why did I have to lose Jake?" Time and time again, we would stop as the story touched both of us and start crying about our similar situations. For him, it had been 45 years since the death of his child, for me I was going on three and one half. We had great discussions, sometimes for hours on end discussing why and how to move forward. I asked most, if not all of the questions. Everything from Jake to my divorce, and the loss of most everything I owned. Through his answers and his book he gave me so many of the answers I needed and helped me through the grief process more than I ever thought possible. He told me that when I start to feel bad about Jake, to try and stop and just thank God for the time that I had with him. To appreciate every moment I had with him any time I started to feel sad (which is still every day)

 I am doing better lately. For the last several months, better than I have for the last several years. I will never get over Jake and even as I write these words, a deep sadness starts to fall over me, but I stop and am just thankful for all the time I did have, and look forward to seeing him one day. And I am thankful for Frank, that's right Frank Maldonado, this man who has helped me to get through some of these hard times. Frank who coincidentally or not coincidentally is the name Jake gave to his tumor. Maybe Jake is up there somewhere setting this whole thing up. Maybe, almost certainly, there is a lot more going on in life than we ever give credit for. Maybe there is some sort of a plan after all.

Another Day

Well, it is Sunday night. Easter night. I went over to my Dad's house in L.A. It's always a little bit difficult when I am here. For one thing, I am away from home and the things that keep my mind busy. For another, it is still weird to be here on a family occasion without all of my family. Jake's birthday on November 2008 was the last time my entire core family was together. It seemed that we were celebrating the success of Jake's treatment and looking forward to having all this behind us. Then, about a day after staying here, We left for home and on the way Jake started to feel sick. It looked like he had caught a cold from someone at the airport in New Delhi. We did not know that it was more than a cold we would be dealing with soon.. New tumors had started growing where the Cytotron treatment was not centered. We did not know we were about to begin the final journey.

So now I sit all alone. This time in the kitchen of my Dad's house writing in my blog much like I did the night before we left for India a few years ago. I have spent the last few years getting re-organized, catching up on everything I let go of when Jake got sick. I have accomplished much. All my taxes are complete, everything I had that was paper has been scanned and stored electronically and I have managed to reduce my expenses significantly. I have given away, donated and sold many of my posessions which has been very freeing. I feel that I am headed back on the track to normalcy. I have been studying new computer technologies in hopes to land a decent job and even developed a plan to exercise my creativity while being responsible and earning money.

Still, I feel as though I am in another world. Almost like I am on the other side of a two way mirror watching everyone else live. It seems that many feel or hope that I am now at the point where I should really be getting over this. The reality is that they hope for me to be better because they all care about me and if I feel better, so will they. It must be difficult for them, there is really not much anyone can say. I still wake early, get up and stay busy learning things, then go to bed when I know I will be able to fall to sleep fast. I think in general I am doing well with the struggle, but I realize now it really is not a struggle to beat, simply a struggle to continually overcome on a daily basis for the rest of my life.

For my own sake and to respect how strong Jake was I will always continue to try and be better every day and enjoy the life that I have been given but I am not sure when if ever I will really be able to come out from behind the two way glass and participate more in life. The point is that I am trying, I will always try... for my own self and to salute Jake whom I miss so much.

That being said, a small footnote. I love my two children Anne and Alex and my niece Teresa whom I consider as close to my own as anyone can be. And I love Joelle, my girlfriends daughter. I was meant to be a father. Being a father has always been the best gift I was ever given in life. It is my most favorite thing to be.

3rd Year

Every year seems similar. As it comes close to this date I start to wonder What I should do with myself tomorrow... On the day of...

I think of plans ranging from all day movie watching to walking on the beach or just sitting in the library writing. Maybe I should try to do something nice for another person today. I spend a good part of my life with these thoughts in the back of my mind but they travel right to the front of my mind as Jake's anniversary gets closer. Finally, I take out my memorial candle given to me 3 years ago today and light it. Then I place it on the mantel next to Jake's picture and continue to try and deal with how wrong it is that I own a memorial candle for my son.

I will go see "The Adventures Of Tin Tin tonight perhaps with my kids and with Pam. I think on some level I will imagine that Jake and Indy are doing some of the same heroic things as the people in the movie or at least having that much fun. And I will wonder if there is something to the fact that this movie about the adventures of a boy and his dog was directed by my favorite director Steven Spielberg and released during a very difficult time of the year. The more I try and figure things out, the more confused I become. The only thing I have really figured out is that this day and the days leading up to it are very difficult and without answers. It is very strange to be celebrating death days instead of birthdays. Pretty sure I will never get used to that. Anyway, here's to life "Le Chaim" and hoping for a good day and something very positive to write about tonight.

23rd Birthday

Today would be Jakes 23rd birthday. That's really all I am going to say today. I am sure he is celebrating it with Indy and Gizmo, both who left us this year closing yet another major part of my life. I consider my life as akin to a long running television show that got cancelled. It was a surprise to say the least, yet there were a lot of great episodes and a lot of sad ones. I file the show in my memories and try to look mostly at the best episodes and learn from the bad. I am on my new show now trying to create good and happy episodes.

Happy Birthday Jake! I love you. And by the way, I guess maybe Indy was smarter than I thought. Apparently he was standing out by the corner of the yard barking and keeping critters away from the house. Now that he is gone, Jib seems to have taken on that responsibility.

To all of my friends.

I know you are thinking of us today. there is really not much you can say. Actually it is a good day. Do something nice for someone today and/or call someone you have not been in contact with for a while. Put your to do list aside for 5 minutes and do this.

Remember that when you die, your to do list will be full anyway. Take 5 minutes to have coffee with someone. Call your parents, kids or relatives and tell them you love them Stop putting it off. Life changes too fast. Remember that what we have is this moment. If you do the math as my brother would say it is only inevitable that there will be more bad times ahead, so cherish each second of each day and don't get lost in things that really don't matter.

Have a great day everyone.

Two very important things

I only write on this blog when I am moved or inspired. When that happens, I write as fast as I can think.

It has been a fairly difficult few months. The months spanning from November which is Jakes birthday month and the beginning of the holidays thru February 22nd. On that day in 2007 on my 50th birthday, Jake was diagnosed with the Stage 4 brain tumors. These months are the most difficult times of the entire year for me. It is difficult to know what to do on Jakes birthday or on the day he left us so I usually end up at Moonlight beach standing where I did on the day he died, I took a stick this year and engraved "Hi Jake" into the sand. My kids and my niece Teresa met me there. To my surprise the ever reliable "Fish" one of Jakes best friends and his mom also showed up.

I was pretty much at a loss as to what to do or say, so we watched the sunset and then I left.

During the day and after I left I kept thinking, "What do I do now?" At the age of 52, I had gone from a completely different life with an intact family, house, home theatre and two good jobs to renting half a duplex with Alex, my niece Teresa and another roommate. All of us shared the rent to make ends meet. After Jake died I found it too difficult emotionally and financially to stay in the duplex so I moved out to San Marcos. There was an interesting side effect to losing so much. I felt like I was 20 years old again and starting over. This was not a good feeling. My financial picture was practically non existent, and I found myself in the position of doing small side jobs in order to make ends meet. The combination of the economy and my age had made it very difficult to find a job I would like to pursue. I was even turned down by Best Buy as a service technician 3 times, difficult to believe as my old company Captain Video at one time did the majority of their repairs.

While applying for these and similar positions I kept feeling a nagging worry to be certain I make the correct choice in what would be my next career. Although I felt like a teenager again financially, I was not, and was trying to make good choices as each day I get older. But I was conflicted. Should I go back to what I know, Tv repair and Home theatre design or try something I really like, something creative. My answer at that time came in the form of "The Fright Institute" a joint venture haunted house with pneumatics and electronics that I designed and built myself.

http://carlsbad.patch.com/articles/fright-institute-looking-for-a-few-brave-souls#

http://carlsbad.patch.com/articles/what-happens-at-the-end#video-2686440

The Fright Institute ran the month of October 2010 after 5 months of preparation. Although it was very well received by the public, it did not profit over it's expenses and I returned afterwards to the task of finding something else to do.

Although not financially successful, The Fright Institute provided for me something that I had been missing for most of my life and that was my desire and ability to be creative. I proved to myself that I could follow my passion of being creative and that it would be well received.

I continued on for the search of what to do next while also continuing to try to resolve in my mind the reasons that so many things had changed so suddenly in my life.

Then, just a few weeks ago, I was finishing up some work with a client who was experiencing many unexpected changes in their life. Eventually the subject of Jake came up and I shared my experiences of the last few years. Whenever I do this, people are shocked at the amount of changes that occurred in my life and ask me how I deal with it. I explain that I deal with it to honor Jake who never complained even to the end. I explain that I know I have only two options. One is to fall down a hole, or the other is to climb out and keep going. Live the best life I can. Jake would want that as would the rest of my family. I explained to my client that I have learned two of the most important things in my life. The first is that life changes. It can change in the blink of an eye but it changes. All that is important is right now, this second. This is all we really have. It is not the houses or cars or home theatres (well maybe the home theater's a little). It is the cup of coffee you have with a friend. The sunset you watch or the beautiful day you see when you walk outside. What is important is the present. The present is all we have. The future is unknown. A sad example is the tsunami in Japan as so many people and their belongings were washed away. Some may hopefully have been enjoying the company of friends, or that cup of coffee I talk about and then life changed.

I left my client with those words. Then I went to Frys to get some electronic parts. I had not left my client for more than 20 minutes when I got a call. One of my best friends had killed himself. Life changed once again. I was deeply saddened and I thought immediately "Life changes"

This morning I was reading an article about Steve Jobs the head of Apple. I had never been and Apple guy but both Steve Jobs and Bill Gates have always fascinated me. When I read Bill Gates book "Business At The Speed Of Thought" the logical part of my personality was so impressed at how he used computers to automate life and business and how I had also unknowingly used many of his basic ideas to automate my own businesses. I kept saying out loud "Hey I'm already doing that! (Of course he is doing a little better than me)

Then this morning I watched a short speech on YouTube by Steve Jobs given to the Stanford graduating class. Again I was moved but this time in a more important way. Bill Gates and Steve Jobs seem to have different motivations for the way they run businesses. Bill's seems to be more business oriented while Steve seems to involve more passion for his product. This is at least the way I perceive it. The combination of the two thought processes is very interesting and I wonder what a joint venture would look like.

It seems as though I am going off on a big tangent but here is my point the second of my "Two very important things"

Follow your passion!

Both men followed their passion. Find your passion in life and do it. If it cannot be in your job, make sure it is somewhere in your life. Life changes in an instant. Make sure that what you decide to do for you life is something you love. Your life could turn out to be very short or very long so live for this second and follow your dream. This might mean that you go to college, a trade school or neither. Get to where you want to go by looking at the goal and never stopping.

Live the happiest life you can to honor Jake and all those that we have lost or those who are less fortunate than us.

It is difficult for me to get this across in writing. The video below does a much better job. It is what inspired this blog entry. Take a moment and watch it.

http://www.youtube.com/watch?v=UF8uR6Z6KLc

November 15th: Always A Good Day

Today is Jakes birthday. He would be 22. Strange that his brother is the same age that Jake grew to be. I have as usual been nervous about this day but November 15th is not a bad day. Actually, today has consistently been one of my best days, followed by January 14, and October 22nd. (My other kids birthdays). November 15th is a good day. The day my first son was born and also, the day Jake came home from treatment in India. On that day, exhausted as he was, he got to see so many of his family as we celebrated his return. So I will try my best to remember that. I know I will have my moments as I have had a few already but today, I celebrate his birth and all the great birthdays I had with him and the rest of my family. To do anything else I am sure would cause Jake to give me that questioning look that says "Dad, what are you doing?" Its my birthday!
Happy Birthday Jake!

Year and a half

Over a year and a half has passed now since the worst day of our lives. An interesting statement, the fact that there is a moment so memorable in our lives that we can actually title it. Time in and of itself has made it more bearable however, I know now unquestionably that the pain will never go away completely (not that I really would want it to as pain seems to be intertwined with happiness).

I suspect that from what others have told me, the pain will continue to decrease. That being said, I had gone to a group grief counseling and listened to several others who too had lost a child at a young age. They expressed their pain as "levels" with 1 being the worst and decreasing as the numbers increased. Most of the time they floated between 3 and 5 which I figure is probably the way I am now. What I had found interesting then was that the people telling their stories were talking about children that had died over 7 years ago and more! At the time I thought "How can it still go down to level one after 7 plus years? Over the past 1.5 years so many have told me how they just cannot imagine how bad one could feel losing a child. I have struggled to figure this out myself and have finally come to be able to explain just how it feels:

When your child is born there is a unexplainable joy that cannot be calculated or explained. It is a love that is so strong it defies explanation. This is a parents love for their children. To lose a child is the exact same feeling except it is 180 degrees in reverse.

My life did not turn out to be exactly the "Leave It To Beaver" or "Donna Reed" show as I had daydreamed and tried so hard to make it be. That being said, I am still having a very good life and a much better one than many. This experience changed me forever, some of it in good ways, others not so good. With all that had happened in the last few years, I still have many fond memories. I have lowered my expectations to a more realistic point of view somewhat although I am still a dreamer and strive to reach for the sky in all things that I do. I still believe that with determination almost anything can be made to happen. I find that almost nothing bothers me anymore with the exception as usual of the health and well being of my family, friends and pets. I lead a much simpler life now. I own less, spend less and appreciate more. I am happy just to be healthy.

I am now re-inventing myself for the third time in my life. My first career was of course electronics and "Captain Video" the company I owned for over 25 years. In 1998 I started my second career Intelligent Solutions which was computer programming, automation, video editing and computer repair and this had done very well for me till a few years ago when the plunge of the economy and the surge of technology caused the prices of computers to drop. Thankfully Intelligent Solutions still continues but like most everyone else at a lower level.

An interesting opportunity came my way in May of this year that I had never expected. In the past years I had intermittently thrown Halloween Parties for friends first starting in Los Angeles and then in San Diego after relocating here. My experience with electronics allowed me to be very creative. The parties were a tremendous success and over the years we saw a gradual increase in the amount of visitors that came to see the house on Halloween night following the party. When the last one was held, now over 6 years ago, the amount of people touring the house numbered in the hundreds most being people we had never met.

I went to visit with some old friends Treggon and Blaine to discuss among other things my marketability and what direction I should take Intelligent Solutions and myself. During the conversation, Blaine told me that I should do a haunted house for North County San Diego. (Blaine had always been one of my biggest fans). Treggon echoed the comment and that was the last I thought about it till the next day when another old friend Bob, called for no particular reason. In 2006 shortly before Jake got sick, Bob and I had discussed doing a haunted house together with me doing the effects and him doing the building of the "house." We had a target date of the following year 2007. When Jake became ill those plans were shelved.

When Bob called, I half jokingly said that if he was still interested in doing a haunted house I was available. Bob excitedly agreed and the "Fright Institute" was born.

Since June, I have been working on this public haunted house which will be located in Carlsbad and opening on the 1st of October. In many ways it is a departure from my normal "safe" lifestyle. It is an expensive gamble with an unknown outcome, however for the first time in my life I am doing something that I have always wanted to do for a living... be creative.

Life is uncertain, tragedy can be waiting any second just outside the door. This chance opportunity is just that, a chance to do something I have always wanted to do. Hard to say how it will turn out but somehow, I believe that Jake has been somewhat involved in this decision. I believe he is somewhere saying "Dad, do something for yourself. Follow your passion to be creative. It is what you have always told me and Anne and Alex and you have spent your first lifetime taking care of us. Now do something for you."

So there it is, you are caught up. Feel free to follow the escapades of Dr. Felix A. Fright (the A stands for AAAAAAAHHHHHHHHH!) and Professor Mycroft Van Helsing as the story unfolds at:

http://www.frightinstitute.com

One Year

It's Wednesday just 3 days before the one year anniversary when Jake left us and I just watched the memorial video for the first time since the funeral. Happily, I had at least some moments of happiness while looking back at the good memories, even during the worst times. I guess this is a start and what many people have told me would happen.
Still after 1 year I feel only a little better than I did before and still think about Jake almost constantly whenever my mind is not kept busy. I have gotten a little better focus and am attempting to re-construct my life after so many changes in the last 3 years. I am trying to get my edge back.
Watching the video brought back so many realities. What a great human being we lost. How he made us laugh, learn and cry.
Indy, Jakes dog is still with us. I am pretty sure Jake is telling him things to do to annoy me, but despite all his barking and idiosyncracies, he drags his little dog bed across the room with his paws to wherever I am and sleeps next to me while I work. Many people have had dreams with Jake in the dream. Some people believe that Jake is actually visiting them in their dream. After all of the things I have witnessed this year I do not doubt it. I have had many signs which indicate to me that he is absolutely ok and somewhere else very good, but I have not had any dreams. I suspect that when Indy finally joins Jake, and with Jakes sense of humor, he will send Indy to be in my dreams and bark through them all night.
It is a strange thing to contemplate what to do on Saturday. I did not want to sit around in a group and mourn. I have decided that the best thing to do is something for someone else, a tradition I had started on the 9th of every month. This Saturday, Pam and I are going to take Indy to dog beach. The last time we went was before I went to India and it was one of Jakes wishes to see Indy experience the beach. He loved it and got so exausted he did not bark for 2 days.

I can't think of anything better to do than something for the dog he loves so much. For those who may be wondering what to do or say...don't worry. No call needed. I understand that there are no words. Everyone has shown me in the last 3 years how much they care about us. From family to friends to all the people who worked in the doctors offices and hospitals and also became our friends, If you feel you would like to comunicate on this day, I will be happy to get a email note or a call just to say hi. Don't worry about what to say. Again, there are no words and you have all shown me how much you care in the last three years. Watching the video though happy and sad was such a nice reminder for me of all the people that care about us. I treasure my friends and family.

For those of you that might want to view the memorial video, I have included it here. Although sad in some respects, I believe it will also make you smile between tears to remember such a kind, funny sweet person. http://www.intelligentsolutions.tv/video/jacobpastelmemorial.wmv

2nd Annual Tell Your Kids You Love Them Day

Had a rough weekend. It all seemed to hit me again like it did 11 months ago. I spent a lot of time in bed trying to sleep away the pain. For this reason, this blog entry was a couple days delayed.

About 10 days from today it will be 1 year since Jake took his turn for the worst and we knew that there would be a sad ending to his long journey. On Dec 19th of last year I wrote the blog entry "A Scare". At that time I was hopeful that things would turn out fine but on December 30th the bottom fell out and as I wrote the blog entry "In an instant" we knew we were close to the end. On this day last year however, things still seemed promising and I instituted the annual "Tell Your Kids You Love Them" Day:
(From last year's blog)
Apparently it is Christmas time in the world. It all seems to be going on but I have not really noticed it. Life and India has taught me and reinforced what matters. Kiss and hug your kids for me today whether they like it or not. Tell them you love them even if you never have. If you are a Dad who never quite felt good about it or embarrased because that is not how you were brought up, do it anyway. I taught my Dad to do it. I think he actually likes it. Today December 19th is the first annual "Tell Your Kids And Friends You Love Them Day" There is no question in Jakes mind how much we love him and no question in our other kids minds either. In a world that is out of our control, you have control over this. If you don't have kids tell someone you love how much you care. Sit them down and spend a moment, look them straight into their eyes and spend a few minutes letting them know. Do it for Dan. This is the only Christmas present I want this year and every year. I have officially created this special day
That was last years message. Do it for me, for your kids and for yourself. And as always a continual thanks to everyone who has been a part of my life especially this year. Oh and by the way Alex and Anne... Daddy loves you.

Blogging In Heaven, A Birthday Message For My Son Jake

Dear Jake,
I am pretty sure that you can read from where you are. You know and I know as well as many others that you are around. You have given me strange and funny signs in the last 10 months. Odd, but irrefutable proof that you are ok. As was the custom of your mother and I, on your birthday we would tell you about the day you were born.

November 15th 1988:
I got a call from your mom telling me that she was on the way to the hospital to have you. I was at work and she was at a routine checkup looking at your progress. In the past 9 months, you had spent a great deal of time causing problems. Your mom stayed on the bed nearly 6 months to have you be safe. Your mom had Placentia Previa. The doctor who along with your mom, was helping to be sure you would be fine and healthy told her that she was not going home at all today, that it was almost time.
Your mom called me and told me that we were going to have a baby today. (At least that is what I heard) I was at work and instantly became Dick Van Dyke, and Ricky Ricardo when their wives told them it was time. All of my logic flew out the window as I walked around excited and nervous in the shop at Captain Video wondering what I should do next. My employees said "Go Captain, Go." I raced out of the shop, jumped into my RX-7 and sped down to Scripps in La Jolla. (Kind of felt like I was in a movie..go figure) As I headed closer and closer to the hospital, I found myself getting more and more nervous and excited. I parked the car and ran through the parking lot and headed towards the maternity ward. With each step I grew more nervous and as I headed toward your room, I realized that I was probably hyperventilating. As I entered your room, I fully expected that I missed the entire event only to find out that my imagination had run away with me and that you were still many hours away from being born. As a matter of fact you would not be born till the morning of the 15th. As I calmed down realizing that you would not be here till possibly the next day I began to feel hungry. Very hungry. I told my wife (who at this point was not allowed to eat anything but ice cubes) that I was going to the cafeteria to get something to eat. (This was probably not a great thing to say, she was starving! )
Your mom had a tough labor. You were turned around the wrong way (always a renegade doing what you wanted to do) and caused your mom a lot of pain. The pain of birth and the end of your life on this earth were the only times you ever caused us pain or sadness. Your life on this earth was filled with joy for us and anyone that knew you.
Anyway, long story short, you were born. You came out crying and the one thing I will always remember is that when I picked you up and said "Hi Jake!" and you stopped crying immediately. You knew who I was, recognized my voice from the 9 months I spent talking to you from the outside. I walked to the parking lot towards my car hours later to go home and sleep for a while. As I walked to the car I looked at my life and vowed to be the most responsible and fun Dad that I could be. I began to look towards the future and all the movies we would watch together and fun times we would have. And did we have fun! Your brother arrived just 11 months later, the best surprise I could have had and I watched you grow up with your sister and brother. Always the calm one, the logical one. Knowing more than anyone your age. Truly ahead of your time. Watching my little family was and continues to be the greatest joy in my life. I wish every day that you could have been with me longer and I look forward to seeing you one day. Till then I will always celebrate your birthday with a feeling of life and thanks for all of the joy you have given me and the rest of the world. I love you, your sister and your brother with a level that compares to nothing else in this world. I am thankful for that, and for you sharing your life with me. Even some of the worst times were some of the best times. I would do it all over again with you.
I love you Jake, Anne and Alex, strongly and forever. Happy Birthday "Jake-old!"

While we try to teach our children all about life,Our children teach us what life is all about.~Angela Schwindt

Nine Months

Nine months this week. I try not to think about the ninth of every month but at nine months since Jakes passing, I think it is still to early for that not to happen. I am now moved out of the house where Jake died and living temporarily in San Marcos until I find where I want to be which will most likely be near the beach. So much has changed in the 3 years since this began. Loss of a business, home, relationship and my son. Looking back, I know that I tried so hard to plan my life. I had everything figured out when I was young. I knew what I wanted to do, and did it. I was living the American dream with 3 beautiful children, a nice home and family. I knew what I was going to do as the years went by. First raising the kids, then selling my business and traveling a bit while enjoying my future grandchildren. Jake would call me once in a while to help him fix a broken screen door or something else that was not working correctly. Alex and Anne would do the same. My life was as planned as any television show or film. Then the bottom fell out of my life and I now question my plans and purpose. I have realized that you really cannot plan anything.

Back to Hyperbarics

Well, I have been packing now for about a week in preparation to move out of the duplex. In my life now, I try to listen and let life take me where it will. About a month ago, I found out that my roommates would be moving out. I took this as a sign that it was time for me to leave the house where Jake died. "Where Jake died", still I have to pause in misery after I write that sentence. Still, it is unbelievable and so wrong. Still, I attempt to try not to dwell too long on it each and every day. The packing has had it's moments especially when I was packing up some of the things we decided to keep that belonged to Jake. As things were being packed up and large items moved, I have had sad reminders of his sickness in the form of objects from his treatment that fell behind couches, and cabinets. There always seems to be something to remind me, be it a sterile alcohol pad used for his injections or some medicine left behind used to treat his side effects. I am hopeful that this move will help me start over and remember mostly the good times with Jake.
I was contacted by Marshall's wife Pat about a lady whose son was stricken with Brain Stem encephalitis, a condition that swells the brain and can cause nerve damage affecting motor skills and speech. Such was the case with this young 36 year old man with a 10 month old child. Pat told me that they were looking into Hyperbarics at the San Diego Center for Hyperbaric Therapy which was one of the places I initially took Jake. She was looking for people to help with his treatment by driving him to and from the center. I volunteered even though I was a little nervous about how I would feel the first time I walked in without Jake. When I entered, I was greeted by Jennifer, one of the owners with a nice hug. We talked for a moment about Jake and she told me that they were seeing more patients getting treatment for brain related injuries with a lot of success. As I left Dan, (the name of the person I was bringing to treatment) and went outside to wait while he had his treatment I was surprised at how I felt. I was a little nervous about coming back to this place after Jake had died. It has always been pretty hard for me to go back to any place Jake had been when he was alive. However, as I walked out of the building I felt that I was not alone. I felt that Jake had been standing right beside me the entire time as if to say "Dad you are doing a good thing." Once again Jake while not physically here was still having an effect on both myself and people around me. It was good to see and talk to these friends I knew just a few months ago when we were treating Jake. There is some kind of unspoken comradery by people that help or go through these trials in life. A sort of everlasting friendship.

A Wonderful Day

It has been a long time since I have written. I felt a loss of ambition and various up and down moments throughout each day. The loss of Jake never really seems to get much easier. The sharp edges of the pain are a little more dull but it is a long haul that I suppose never will really end. For these reasons, I have gone through some moments of less caring and some introvertness the past few months. At least several times a day I still have moments of disbelief that my son is gone. It think this will be forever, no matter what the grief counselors say. It has been a rough year all around with the passing of many public celebrities, Michael Jackson, Farrah Fawcett, Ed McMahon, and a friend Vince Ballardo who just passed this weekend in his sleep. It has become increasingly difficult to live in the house where Jake died and so when my roomates decided a couple of weeks ago to re-locate and my son Alex also decided to move out with friends, I felt that it was for good reason and that I should let life take me where it will, there must be a reason. I have begun the process of packing slowly for an eventual evacuation on October 1st. The economy has not been friendly to me and my job search progress and so, as it seems that it may be a long time before I would be able to consider being a homeowner again I have decided to relocate possibly closer to the beach where I will feel closer to Jake. In order to minimize the pains of moving so many items that I rarely will be using for a long time, I have begun selling selected items that may be of better use to others. One such item was the Les Paul guitar that I bought when I was about Jakes age and had given to him. This is where the title of this post comes from.
I advertised the guitar on Craigslist and had quite a few people interested in it. One person however stood out and asked to come see it. His name was Josh and he arrived at my house with his mother. As we started talking I came to find that he was born the same year as Jake and that they would both be near the same age now. As I spoke to him and his mother we both realized that this young man was very similiar in personality to Jake. It became apparent to me that this was the young man I wanted to give the guitar to. One thing led to another and an hour later we had watched Jakes 18th birthday video and spent the rest of the time talking about our kids. It felt very right to give this guitar to Josh. He seemed to have very similiar positive qualities just like Jake and I felt that Jake would approve. It was one of the first times I could talk about Jake and actually feel happy and proud even though he was gone. I could tell after talking to Josh and his mom that Jake was still changing other people's lives for the better and that made me happy. I will not see Jake again for a long time but I live for these positive moments and the ability to be able to show people how proud I am of him and all my kids. On the 9th of every month the aniversary of the day that Jake died, I think about him more than normal and try to keep busy. I have decided that on the 9th of every month I will plan to do something to help others for the entire day. I believe it is a positive way to deal with the anniversary of his death by trying to take the grief and turn it into something helpful. So the 9th of every month is up for grabs if anyone needs help from moving to computer help or anything I can do. (except gardening or painting, I hate gardening and painting!)

Five Month Update

Click on the link:
http://www.intelligentsolutions.tv/video/5monthupdate.wmv

Update From India

I have heard back from India regarding Jakes final MRI and the effectiveness of the Cytotron. My feelings as well as the feelings in India was that Cytotron was successful at least at containing the tumor during treatment but the disease got the better of him when we got home. It is unfortunate that only I was able to see the improvements in Jake and no one really saw this in the U.S. except for the video of him walking down the hall by himself in the blog post "Detailed MRI Results". The pictures of Jake in India and his physical improvements in color and strength, especially while being able to be off all chemotherapies and medication leave me with no doubt that this treatment was effective at least to some degree and will improve over time.

I sent the following letter to Dr. Sibia to thank him and Dr. Kumar and to summarize my feelings:

Dr. Sibia,
Thank you for taking the time and perserverence to get some answers. I will look forward to Dr. Kumar's comments.
My feeling is still that Cytotron is an excellent therapy and we may have had better results if we had tried it first rather than last. It is unfortunate that it is not available in the United States at this time. Still with that being said, I believe that in order to combat a glioblastoma it will probably be necessary to be able to do greater coverage of the entire brain simultaneously due to the diseases tendency to spread.. I believe the areas we treated worked at least during treatment and that his eventual loss was due to tumor growth after treatment was stopped. If the machine was in the U.S. he could have continued treatment. It will be interesting to see where we are in 5 years with this technology. I suspect that the areas of simultaneous treatment coverage will be increased. I hope to see the machine in the U.S. one day.
I also believe I should have had him on hyperbarics during his U.S. and India treatment. I should have put him on oxygen during the trip home and stretched the days out so it was not so hard on him. In addition, I should have had a mask on him as he caught some type of fever in the airport. He never really recovered from the trip. I do not blame myself for these oversights. In the end, the disease probably just got the better of him. Unfortunately we were all forced to try to learn too quickly and make decisions with no experience. We never dreamed of having to make decisions like this when Jake got sick in 2006. Only time, research and experience will teach us how to battle this disease.
That being said, I will never forget my times in India. They were some of the most wonderful and most difficult times of my life. I am forever changed by the experience. My views on life and what is important have changed for the better, forever. It was very rewarding to see Jake's walking improve, watch him get some sensation back in his legs and just to spend so much time with him when he was not feeling effects of any chemotherapy. After treatment every day at 3pm we would lay on the bed in the hotel and Jake would rest his head on my shoulder as we watched an episode of Star Trek. Both James T. Kirk and Jake were always battling against impossible odds. As Jake would lay with his head on my shoulder I would contemplate how wonderful it was to be able to spend this amount of time with my son. I feared that it might only be for a short time, the fact that he was fighting a grade 4 glioblastoma never left my mind.
In the end, Jake was able to be surrounded by all the people he loved and who loved him. I am not really a very religious person but in the times after Jakes death I have had signs that Jake is now happy and well. Some signs completely unexplainable by logic. I have also been fortunate to visit a renown psychic medium and the experience has left me convinced that Jake is fine and that I will see him again one day. I believe it would be short sighted to think that there is only this life. Jakes life touched and continues to touch others. He has made change in people and the world. Given a choice, I would have rather that he taught people less and won this battle or never got sick at all but this is out of our hands.
I will always remember fondly our morning coffee and talks about life during Jakes treatment. You are a good friend and have taught me much. I hope to surprise you by walking into your office for some coffee someday. I hope that the Cytotron research continues to grow and help others and that someday I may be able to help with it in the United States.
Dan

Magical Tribute to Jake

We have put together a magic show with performers from the Hollywood Magic Castle as both a fundraiser to help pay medical bills and to send sick children from Rady Childrens Hospital to the event for free.
Everyone is invited. Helping other sick children feels good and would make Jake proud.
To see the flyer click here:
http://www.intelligentsolutions.tv/jakebenefitflyer.pdf
The address of La Costa Canyon High School, where the event is being held is:
1 Maverick Way
Carlsbad CA
The event will be held in the auditorium
Here is a link to the event via google maps:
http://www.mapquest.com/maps/map.adp?country=US&countryid=250&addtohistory=&address=1+Maverick+Way&city=Carlsbad&state=Ca&zipcode=92009&submit=Get+Map

Not Doin' So Great

Having gotten through a great portion of Jakes room, I can see that eventually the task will end. I have removed about 3/4 of the things that identified Jake to me ie: his music and movies, clothes and some books but I still need to go through all of his writings and things from when he was a younger child. I am progressing fairly well in the re-organization of my life with things being completed that were on hold for the last couple of years. As I start to see an ending to this portion of my grieving I seem to actually have more saddness. Similiar to reaching the end of a book that you really enjoy. As sad as the ending is you still read to the very last page. Putting away Jakes things, although painfull is sort of like holding on and continuing to read a book when you already know the ending. There is that sad feeling of almost being done but in this case there is not another book to read next. I guess that is why it is called a chapter in our lives. There will be a time when I put away the last part of Jakes life and officially close the physical memories of his lifetime... close the read book so to speak, and that reality makes me sad. All that is left is to continue by creating new stories now about Jake ie: the "Relentless" book and trying to do things that carry on what he has given and taught all of us. I miss him. No matter how much I write about it I cannot explain in words how much I miss that boy.

On the train, On the road back

I am on the train back from San Luis Obispo after visiting my mom and my brother Jack. On the train by myself, yet another first and a memory of Jake and I going to the airport in Bangalore by train. Another realization of a time we had and can't have again. Interesting all that the human mind remembers. Songs come on the radio that I have not heard literally for years and I still remember the lyrics. I suppose everything is stored in our brain somewhere. Every moment of our life, every memory. Using this logic it appears that I will forever reminisce sadly and sometimes fondly of my life with Jake. There are probably hundreds more "first times" I will experience and emotionally deal with in the coming months and years. I have spent the last couple of months dealing with these feelings in several ways. One thing I have been doing is re-organizing my house and completing tasks that went on hold back in November of 2006 when Jake started having symptoms. Initially my first goal was to rid the house of every possible memory of cancer, from syringes to medicines. Even clothing he wore when he got sick. The next chore and truly the most difficult since the funeral has been deciding what to keep. Our good friend Michelle has decided to make both Marci and I quilts from some of Jakes favorite shirts. That took care of the clothes but there are still so many items to consider from music to books, childhood trophies and toys. It is a long painfull process and only something I can do a little at a time. I will hope that I can find mostly joy in memories of these items one day instead of sorrow at what is gone for now.
I have decided now to force myself to be more driven at getting myself out of this slump. One way I am going to do this is by starting my book, the title now changed from "Saving Jake" to "Relentless" a title that speaks to the manner in which this cancer spreads and also to the way Jake decided to fight this disease, with a positive outlook and humor.
The second thing I am going to do is become more focused at work. The economy has not been helpful in this regard but I will succeed through determination.
Lastly, I will continue to try and grow my connection with my other children who were put virtually "On Hold" for two years when Jake got sick. I realize my mourning is not over and to a degree never will be but as I have said before, Jake would think less of me if I did not set a good example as he did on how to live and survive in the face of adversity.

As my good friend Marshall has told me in the past, "As bad as things are they can always get worse". I have several things to be thankful for.

1. Jake was not taken by a drunk driver or kidnapped by another person. As Jake always said "Cancer is not prejudice and it has no conscience, it gets who it gets"
I would have a much more difficult time if his death was caused by another person rather than an unnamed killer.

2. Jake was luckier than many children we saw over the last couple of years at Childrens Hospital. Many died at birth or shortly thereafter. It was not uncommon to see 1 and 2 year olds in make-shift wagons being pulled by a nurse down hospital corridors with infusion pumps connected to their body. Jake and I would look at each other during these times and as was normal for us, speak without speaking. We both knew that he was luckier than many.

3. At least 18 of Jakes 20 years were very happy. The last two years of his life although difficult had many good times as Jake got close to all of his relatives and many people he never had met before.

4. Jake changed the lives of many, promoted awareness for new types of cancer therapy and showed so many what is important in life. To this day I find pictures of him in many locations, from family to friends. I am told constantly that when life is getting them down, they look at Jakes picture and remember how to deal with adversity.

Long Emotional Days Part 2

On the subject of long emotional days and the multiple layers involved in mourning there are significant areas that seem to be much more difficult then others and some that are guaranteed to be terrible. Such was yesterday when I began the sad sad process of moving some things out of Jakes room and into mine to make room for a new roomate that will be coming aboard in June. My niece Teresa will be moving into Jake's room and Sharissa (the new roomate) into hers. It did not help that I let my anti-anxiety medicine run out. Sufficed to say I became a complete basket case as I began to move things out of Jakes room and into mine. Part of it was the confirmation that Jake was gone and his room would no longer belong to him. Another part was seeing all the music and movies he had bought and set up meticulously along with other articles that defined his identity. After moving several items of Jakes we have decided to keep into my room and watching as simultaneously Jakes room became less Jakes room and more of a generic room my sadness increased. Such a statement of the end of his life on this Earth. I began looking at some of the movies he had collected over the last few years. Movies that most people would not even watch but movies that Jake found meaning and laughter with. I looked back on how every day Jake and I would go to the book or cd store or out to lunch. Jake got anything he wanted in those last couple of years. From books to cd's to lunches. The result, his physical legacy now partially in my room and his and I walked over to Pam's house my neighbor and collappsed on the bed (for the upteenth) time crying hysterically. I explained to her that I did not know if I would be able to stand seeing his things every day without being sad. I thought I might have to pack it all up till such a time as my heart has at least partially healed over. I felt it would be a mistake to jump to any quick decisions.
After the cry as usual I felt better and when I went back home I saw the possibility that I may be able to get myself to a point where I can see only the positive things about Jakes earthly goods and not concentrate on the negative. For now, that is what I will try to do. I am not sure what this blog entry does for anyone. Perhaps it is a guide for what to expect so that you are not blindsighted should a disaster occur. Even though I seem to have outlined many of the major feelings and situations one is liable to go through, there as still many more left that I do not even know about. It is hard to conceive that I may one day be fairly recovered from this. It is difficult to define recovered in this case. As for Jake, when I get this sad, I think of him up there laughing at me and when my time comes one day I know that when he greets me it will not be with him running to me excitedly and giving me a big hug. No, I expect that the first thing he will say to me as he stands there calmly with a mischevious smile on his face is "Well, how much did you miss me?" Then when I want to run to him and give him a hug, I will hear him say.."Wait! First you have to say hello to Indy" (his dog)..."Look at him!"

Long Emotional Days Part 1

I am continually surprised at how I inaccurately assume where I am at in the mourning process. It seems that usually when I state it is getting easier the next day or hour it becomes much more difficult. Mourning the loss of your child has many layers that are not readily apparent. Some days I assume it will be a terrible day and then I am proven wrong and it is just fine. Other days that I think will feel great are horrible. Take the last couple days... Yesterday, I decided to stop by Childrens Hospital as I had not been there since Jake died. I anticipated that it would be a very difficult thing to do as most of my previous visits were with Jake while he was alive. I went however into the building and found myself doing very well. I was stopped several times by doctors, nurses and other staff members who had helped during the course of his disease. Everyone gave me hugs and told me how much Jake meant to them and how his life brought so much joy and laughter to their day. I felt that Jake was still with me (which I suppose is possible because before I got out of the car I said "Jake, you better be right by my side during this!") The visit went well including a session with the staff psychologist as we reminisced and talked about Jake. After the session, I had a final lunch meal at the cafeteria where I had gone so many times in the last few years when Jake was in treatment. It was odd to know that this would probably be my last meal at that location. I no longer have children under the age of 18. Like the last day of school I looked back on the last two years with some fondness, lots of sadness and still a sense of disbelief of what we actually went through in the last two years. Looking around the cafeteria and the receptionist areas I saw some parents that were just starting treatment for their sick child and felt sorry for the long road that was just about to begin for them.
My last stop for the day was the San Diego Hyperbaric facility to return a chair I had borrowed to assist in helping Jake get around. This journey was very sad as I walked into the office for the first time without Jake. The size of the office was of course much smaller than the hospital and as I walked out the door for the last time I paused by my car to look up at the sky and once again ponder the idea that this was all real and actually happening.