One year ago today

I can’t believe it’s been a full year today since we lost Juli forever.  I’ve been very remiss in posting here on this blog, and I’m not even sure if anyone will see this post other than those who are still subscribed to the notifications, but I’m hoping to get back to occasionally posting now that I have the guilt of having not posted recently over with.

I’ll start off with saying that the kids and I are doing really well.  Our friends, family, and community have taken such good care of us.  We have all settled into our “new normal”, and although we all miss Juli, we have been able to go one with our lives enjoying each other and every day while always keeping her in our hearts.  Each of us has experienced the past year in our own way, and I can’t speak to each of the kids individual experiences, but I will say that they are incredible, strong children who inspire me every day.  My growth this past year has encompassed getting used to being a single father, making some wonderful new friends, learning all the things you learn being a single parent, and figuring out how to fit the past into the future.  It is a little bit of that last part that I want to share with you now:

Although today represents the day we lost Juli, I want to make it represent the incredible legacy that she has left behind. Therefore, today I am going to share my dream with all of you, and once again ask for your help. Today is the day that I publicly announce to people that I am forming a non-profit organization with the purpose of raising funds and awareness for cancer research, patients, survivors, and their families. The name of this organization is “Cure the Color.” I have already registered curethecolor.com and ensured that it isn’t in widespread use nationally (or trademarked). The full name will be “The Juli Shabazian Cure the Color Run.” If anyone has ever been to a color run, they will know that these are fun 5k events where people get showered in color, and end up tie dyed at the end of the day. If you don’t know what a color run is, here is a video: http://www.youtube.com/watch?v=4EERSfHiqT8

In our color runs, we will have colors that represent specific cancers such as gray for brain (dedicated to Juli), pink for breast, orange for melanoma, etc. I would like to use lavender (caregiver color) to start the run, and purple (survivor color) to end the run. I think this will be a great way to have fun, honor those who we love that are battling
cancer or have been lost, and to engage the younger generation in the battle against cancer.

I already have access to dozens of locations around the US with volunteers to staff a color run, but they don’t have the logistical knowledge or experience to put it on. Things such as permits, where to get the paint, suppliers for T-Shirts, logistics for putting on the run,
website for registration, etc. That is where my organization will come in. We will have the website that will completely handle their registration, suppliers for paint, T-Shirts, etc., a playbook for how to successfully put the run on, help with the permit process, etc.

My hope is to put on our first run next year (maybe 2 or 3 more), 17 the following year, and 35 the year after that. From there, the sky is the limit.

I have already gotten folks with the City of San Ramon to say they will help with whatever we need to figure out the logistics of permits, etc., and I have a large group of folks that have been helping to put on a number of successful run events locally for many years that I plan to call on for run knowledge and experience, but I still need a number
of things:

Help with marketing: I need a logo, and it would be nice to have a video similar to the one above that could be used. Other marketing collateral (brochures, T-Shirt design, ????) would also be great.

Suppliers: Connections to procure large amounts (eventually) of T-Shirts and the paint used.

Ideas: If you have been to a color run, what did you like, what could be done better, etc.

Website development: I need a website that both communicates the organization goals, and has the back end required to support multiple runs in disparate locations.

Accounting: I need someone who is familiar with the accounting intricacies of a non-profit to help setup and keep our books.

Advice: Let’s face it, there are things that I just don’t know that I don’t know! Although I have significant experience in the non-profit arena, the collective experience and intelligence is one I have learned to embrace in my career and I call upon it here.

Sponsors/Donors: I’m funding all of the formation of the 501(c)3 out of pocket right now, but as we start to ramp up, it would be nice to have as much financial support as we could. I’m sure we can get large corporations like Chevron (local here in San Ramon) once we have the marketing materials, but a list of organizations and contacts would be  great. This is going to be a national campaign/event, so don’t limit your ideas to organizations where we will have a run.

Anything else you have or know that you think would be helpful!

So there you have it. You all are among the first to publicly hear about what I hope will become a well known national organization that puts on hundreds of “cure the color” runs every year. Any and all advice you have for me would be very welcome and appreciated.  Please email me directly with ideas or if you would like to get involved.

Finally, for those of you who are local, there will be a small “celebration” at Hopyard to toast Juli starting at 7:30 tonight. If anyone would like to come help us celebrate the incredible woman and legacy of Juli, I would love to see you.

Chip

The Blessings of Cancer

I know I wasn’t planning on posting until Juli’s birthday on 6/16, but there is a great video that hits close to home making it’s way around the internet about a boy who passed away from cancer yesterday, on the three month anniversary of Juli’s passing.

At the end of the video, Zach’s mother says “One of the blessings to come out of cancer is that you kind of come out of denial, and so in doing that, things are better, life is richer, everything means more, beauty is more beautiful. He’s a beautiful person. I’m so happy to have been Zach Sobiech’s mom.”

When people wonder how I can be doing so well and be so positive after our loss, this is a great example. They may not have made a video about Juli, but she was the same kind of positive spirit that makes me think every day that I’m so happy to have been Juli’s husband.

http://www.youtube.com/watch?v=9NjKgV65fpo&feature=youtube_gdata_player

Mothers Day

Today was our first Mothers Day since Juli passed.  Lots of people have reached out to me yesterday and today saying they were thinking of us, and I appreciate all of the love and support.  It honestly wasn’t as hard today as most people thought it might be.  My theory on that is due to the fact that we didn’t have Juli with us last year for Mothers Day, and the weeks leading up to it were probably harder on the kids than today was.

Last year, Juli was in the ICU for Mothers Day, and the kids could only visit for a short time.  Juli had only been off the ventilator for three days, and it had only been a week since the doctor said I should bring the kids in to say goodbye as he wasn’t sure she would make it through the night.  We all know she survived that stay, but she never really recovered from the radiation that caused the pneumonia and sepsis that precipitated that stay.

I think the weeks leading up to today were harder on the kids than today.  They were all in relatively good spirits today, but the past two weeks have been some tough ones with some acting out.  I know that the teachers are sensitive to what they are going through, and made all kinds of accommodations, but over the past two weeks while the kids were making Mothers Day gifts, they all knew that they wouldn’t be able to give theirs to Juli.  This is what breaks my heart today, not the actual day itself.

We started the day with me making Juli’s favorite breakfast, Eggs Benedict.  It was easily her favorite, and it was great that we had that today.  That will be a continuing tradition going forward.  The kids love Eggs Benedict, and since it was Juli’s favorite, it’s a nice way to connect and remember her.

After breakfast, we went to Build A Bear.  I really didn’t plan on doing this today, but when I asked the kids if there was anything special they would like to do today, Christina and Nicole said they wanted to use the gift cards they got on their birthday today.  Christina’s was for TJ Maxx, and Nicole’s was for Build A Bear.  Well, Christina decided she would rather do Build A Bear today, so we went there.  I wanted to make sure that it was something special for Michael and Samantha too, so I told all four of them that I would buy them an outfit for one of their bears as a Mothers Day gift from Juli.  Since they have all been there a few times already, they all have bears they could dress.  They all picked out a cute outfit for one of their bears, Nicole and Christina made their bears and used their gift cards to pickup a few more clothes for them, then off to Party City we went to pickup balloons.

At Party City, each of the kids picked out three balloons for the bouquet that we would be sending Juli.  I picked out a single red balloon (symbolizing a red rose), while the kids picked out a plethora of colors.  When we got home, we each wrote a message to Juli on at least one balloon for the release (except Christina who attached a haiku she wrote Juli as school).

After the messages were done, all we had left was to send the bouquet to Juli:

This launch was much more successful than our last one as I had some fairly heavy keychains attached to the balloons last time that said “I Love You Juli.”  This time, it was just the balloons, and they took flight to the heavens easily.  I sat there and watched as they soared high into the sky for at least 15 minutes.  They were so high and so far east that it was simply a bright speck in the sky.  In fact, it looked just like a star.  I think that’s what it was, Juli’s soul shining bright like a star in the heavens, acknowledging us for Mothers Day.

That’s it for now.  Life continues to go on, and the days have gotten better for all of us.  We still have a huge hole in our lives, but the sadness doesn’t consume us anymore.  There are still waves of grief, and we will probably always have those, but we have settled into our new normal.

My next post probably won’t be until June 16th which will be another hard day for me.  Not only is it Fathers Day, but it’s also Juli’s 50th birthday, and our kids leave for a week at Camp Kesem that day.  We will send Juli another balloon bouquet that morning before heading off to camp, but then it’s going to be very quiet and lonely around the house.  I’ve taken the week off of work, and am thinking that I may take a mini vacation somewhere, but I have to be back Thursday night so I can’t travel too far.  If anyone has any suggestions, send them my way ;)

That’s it for today.  Thanks again everyone for your love and support.  I’ve said it before, and will keep saying it, the support we get makes a difficult journey much more bearable, and the more people who help remember Juli, the better the memories will be for our children.

Happy Mothers Day to all of you mothers out there.  Give your children a hug for all those mothers who can’t today.

20 Years

20 Years ago today Juli unknowingly walked into a private “pre-grand opening” event at Santa Rosa Brewing company and changed my life forever.

We always used to joke about how she crashed a private party.  Juli had worked at the brewery when it was called Kelmers Brew Pub and was bought by a good friend of mine and her brothers.  When they shut the brewery down for a few months to remodel, Juli got a job at another brewery in Petaluma called Dempsey’s.  When the Santa Rosa Brewery was ready to open, there was a “soft launch” party where they invited family, friends, and the people who helped in the remodel. Juli and two of her friends were driving by headed to the movie theater across the street when Juli noticed people in the brewery and told her friends “it looks like the brewery is open, let’s grab a beer before the movie.”  Since Juli had worked there before and knew my friend and her brothers, nobody questioned whether or not she had been invited.  She didn’t make it to the movie that night, and I think we were some of the last people to leave.  I remember that evening as if it was yesterday.  We had lots of great memories at that brewery over the years, memories I will cherish forever.

14 years ago today, Juli and I married.  It was a great celebration that we talked about often, and many people would comment on over the years.  Everyone from the caterers to the Reverend commented on how it was one of the funnest weddings they had ever been to.  That’s a great comment on our lives together, fun!

I knew that today would be an emotional day for me, but I honestly couldn’t have imagined the depth of the loss I feel today.  My cheeks are chapped from all the crying I’ve been doing, and I just want to climb to the top of Mount Diablo and yell WHY?  I’ve been doing remarkably well in my “grieving process”, but today hit me like a brick wall.  I guess this is why everyone who has suffered a loss says it’s the year of firsts that is the hardest.

I’ve been planning on watching our wedding video today and removing my ring at the point in the ceremony where Juli puts my ring on me.  I still plan on doing this with the kids in a little bit, but I’m dreading it.  As wonderful as I felt the day of our wedding, looking forward to being joined together as husband and wife, this feels horrible to the same degree.  I keep questioning whether or not I should be doing this, but intellectually I know that I have to let go, and the day and symbolism are probably as good as it’s ever going to get.  I’ll feel naked and weird tonight without my ring on as I go to a special Rotary 6 club meeting and dinner, but I know that Juli will be with me in spirit.

After the ceremony, the kids and I are going to send Juli a bouquet of balloons to the heavens.  I’ve attached a “I Love You Juli” message to the balloons and hope that she is able to appreciate it from her view in heaven.

I’ll end today’s post with the message that Juli gave our good friend Cindy to pass on to me every year on our anniversary:

“Thank you Chipper from the bottom of my heart for loving me like I could not ever imagine, and bringing laughter into my life. Be strong now for our 4 incredible kids and you know what you need to do! I love you”

One Month

Just like my last post two weeks ago, it’s hard to believe that it’s been a month already.  The 20th was a particularly difficult day as it was not just the one month mark of Juli’s passing, but it was also the 10th birthday of Christina and Nicole.  The celebrations will be the hardest as life goes on.  Birthdays, proms, graduations, weddings, and grandchildren are all things that will be bitter sweet without Juli.

Life is going on for us, and I’m back to work now.  I spend about half the day blissfully ignorant of my feelings of loss as I get wrapped up in work, the kids, or some other distraction, but then when I least expect it, something happens to remind me.  I realize it’s only been a month, but I’m sure that the number of hours spent in grief will diminish slowly over time.

The kids and I were able to spend last weekend together as a family without distraction for the first time in over a year and a half, and that was relaxing.  As much as I wish I was still helping Juli battle every day, it was nice to be able to spend the weekend where the kids could be my only focus.  We went to Nordstrom’s and I let the kids spend a gift card I got Juli, got a frozen yogurt, and did some other shopping on Saturday.  On Sunday, we went to the Dublin St. Patrick’s Day fair.  All in all, it was a “normal” family weekend.  I know Juli was with us in spirit.

Hopefully in the near future, we will go camping as that was a family activity that we all enjoyed.  A children’s grief counselor that I spoke with before Juli passed told me that it would be good to do something that we used to do as a family once things started to settle down.  The other big thing that we always did was our annual trek to Disneyland, and I’ve promised the kids that we will make the trip this year.  We missed last year due to Juli’s battle, but I’m hoping that we can make it an annual trip again starting this year.

The next big day in my future is April 17th which would have been the 20th anniversary of the day we met, and our 14th wedding anniversary.  I’ve decided that since Juli put my wedding ring on my finger on 4/17, that’s an appropriate day for me to retire it as well.  I’m not looking forward to doing that as I’m sure I’ll feel as naked as the day I was born, but I find that I work best when I’m able to make a plan.  Fortunately, that night is a Rotary night, so I’ll have plans until about 7:00, but anyone who wants to join me in a celebration of our life together after the meeting is welcome to join me.  I know I’ll be planning on something, I just don’t know what yet.

Until next time, take care and give those who you love an extra hug for Juli.

Two weeks

It’s hard to believe that it’s been two weeks today since Juli passed.  In some ways, it feels like it’s been months, in others it feels as if it just occurred last night.

Juli’s service was beautiful.  I really believe that it was exactly what Juli would have wanted if she had been able to put it together herself.  In addition to the service by our friend Pastor Travis Guse, I spoke a bit including restating our marriage vows (this was the most difficult thing), as did my father, her brother Blake, and her long time friend and great supporter during this journey Carrie.  The service ended with a friend singing my customized version of the Beatles song “Yesterday”:

Yesterday, all my troubles seemed so far away
Now it looks as though they're here to stay
Oh, I believe in yesterday.

Suddenly, I'm not half to man I used to be,
There's a shadow hanging over me.
Oh, yesterday came suddenly.

Why she had to go I don't know they couldn't say.
There was something wrong, now I long for yesterday.

Yesterday, love was such an easy game to play.
Now I need a place to hide away.
Oh, I believe in yesterday.

The church held 300 people, and it was standing room only.  This is absolutely the support that I hoped our children would see to understand just how special their mother is.

I’ve thanked her before, but I really owe a special thank you to our good friend Cindy Duffy who not only kept my family running so I could be with Juli throughout the journey, but who put together the service in just two days time and did it perfectly.  I don’t know what I would have done without her these past 18 months.

I don’t know what the future holds, but I’m hopeful that we are going to be able to remain in our house and stay in this incredibly supportive community.  It will take a few weeks to work through everything, and every time I have to make a call it’s difficult to get through the reality of what I’m doing, but things are looking like I should be able to swing it for at least the next year and a half, and hopefully permanently.

As for emotionally, the kids are handling it about as well as I could possibly hope.  Juli really taught the kids and I incredible strength and family values.  I tell people that she really raised five kids (including me), not just the four she gave birth to, and I couldn’t have had a better role model.  I’m having ups and downs as can be expected, but I’m comforted by looking back at my role in our journey and having no second thoughts, regrets, or guilt.  I’m fortunate to say that I can’t think of a single thing in the past 18 months that I would have done differently or wish that we had done.  As I told Juli many times, even knowing this outcome, I would do it all over again to have spent nearly 20 years with her and become the man she shaped me into and to have our four incredible children.

That’s it for now.  I’ll continue to post about the journey we now go through without Juli to both keep you all updated, and to hopefully help others that may be facing a similar journey.

Transition Complete

As many of you already know, Juli completed her transition to heaven yesterday, 2/20 at 3:45 a.m.  I held her hand through her last breath, and hugged her until her heart finally let go.  She went peacefully as we had hoped.

I suddenly feel like half a person.  While I am comfortable with my role in Juli’s battle, and I know I did everything I could possibly do, and I have absolutely no regrets or second thoughts on any decisions we made, paths we took, or anything else, I’ve still lost the biggest part of me.  Juli was and will always be my best friend and soul mate.

After bringing our children to a private viewing today to say goodbye, I reminded Juli that when we took our wedding vows, we chose to replace “till death do us part” with “in these moments, and evermore.”  I told her that it will be a long wait, but I will be reunited with her again in heaven when the time is right.

Juli’s obituary has been posted on the blog here and contains details about the service and celebration that we will be having this Saturday 2/23 at 1:00.  The service will be performed    by our friend and the minister of St. Philips, Travis Guse who has provided us with not just spiritual comfort, but friendship.  The sanctuary is large, so we invite all to come and celebrate Juli’s life with us.

This may be the end of Juli’s time here on earth, but it is far from the end of her legacy.  We will continue to honor Juli both here on the blog and in various celebrations that we will hold celebrating her life.  I will post details on those as well when they get planned.

As a parting thought for today, I will leave you with something that is bringing me great comfort right now.  Our friend Cindy told me that during one of their talks to and from physical therapy, Juli asked Cindy to call me every year on our anniversary to let me know that she loved me and appreciated everything I did to help her with her battle.

Rest In Peace my love, I will see you in evermore

Transition Day

Today is a day of transition in so many ways. As I wrote in my last post, I would transition Juli to hospice by today unless there was a miracle of some sort. There has not been a miracle yet.

I had refused to fully accept the doctors opinions that the cancer was back so aggressively, and so quickly, so I had requested some follow up imaging (MRI) to confirm that it was truly back. I figured if it was that aggressive, an MRI three weeks later would show some solid evidence that the battle had in fact been lost, not just that the doctors thought it was. Although they were sure, I wanted a second data point. I guess that’s the engineer in me, needing a binary yes or no answer. Unfortunately, it took a week of demanding the test be done, followed by an escalation to Patient Relations and the Ethics committee, but we ended up getting the MRI Saturday night. Last night the Dr. called and went over his read with me, and it did in fact show significant spread. Today, the resident went through the actual imaging with me, and even my layman’s eye could see the progression that is simply irreversible.

So today we transition from hope to letting go. Juli transitions from ICU to hospice. I transition from being with her all day to being with her 24×7. Soon Juli will transition from earth to heaven where her mother, grandparents, and cousin will all welcome her with love. The kids and I will then transition from life with Juli, to life without her.

Keep us all in your thoughts and prayers as we transition throughout the week. I probably won’t post again until Juli has made her final transition, most likely later this week, but I will continue to post here after that keeping all of you incredible supporters updated with how the kids and I are doing and honoring the memory and legacy of Juli.

It’s down to a miracle now

It’s been a few days since I posted, and a lot has happened, while at the same time nothing has happened. Juli unfortunately has shown no signs of neurological improvement, and even the neurology team is now recommending that we discontinue treatment.

Neurology’s take on Juli’s situation is that she will never recover beyond possibly returning to the point where she was able to move her arm a few inches, but that she will never “wake up.” It’s pretty clear that Juli is at least somewhat aware of things going on around her as she will occasionally cry, grunt, or move her hand a little at times that appear to be a response to comments, questions, or the situation, but it’s not consistent enough to be looked at as any kind of neurological recovery, nor is it a recovery that Juli would want me to sustain her through.

Even if I did decide to selfishly keep treating her for the long shot that she might one day be able to open her eyes on her own, she probably wouldn’t physically survive nearly long enough for that to happen.

Two days ago, Juli’s heart rate shot up, and her respiratory signs started falling. Those signs pointed to blood clots causing pulmonary embolisms. An ultrasound confirmed that Juli has extensive clots in both legs. The normal treatment for blood clots is blood thinner, but because Juli has an EVD in her head to relieve the intra-cranial pressure, blood thinners would cause her to have a stroke. Instead, I agreed to install a “filter” to prevent further clots from potentially causing a massive heart attack, but that won’t fix the problem, just possibly prevent it for the short term.

My plan now is to try to keep Juli stable until the 17th or 18th at which time we will move her to a “comfort suite” here at the hospital. I really wanted to take Juli to a place closer to home for her final week, but the doctors don’t think she would survive the transfer from San Francisco to San Ramon. It’s possible that if she stays stable for a day or two in the comfort suite, we might then be able to transfer her to San Ramon for the last day or two, but I’m not sure that would be of enough benefit to the kids that it’s worth the potential trauma to Juli. I guess we will cross that bridge when we come to it and make the decision based on the facts we have at hand at that time.

As the timeline sits now, Juli will probably join her mother in heaven somewhere around the 22nd/23rd of the month.

Last night I had to tell the kids this timeline, and it was one of the hardest things I’ve ever had to do. Unfortunately, without a miracle, I have a few conversations coming up which will get increasingly harder, but Juli and I have always felt it was important to be completely up front and honest with them.

Thank you all for your incredible support. Juli and I both feel the tremendous love from all around the world.

Keep us in your prayers.

Important week

This is an important week for Juli. Wednesday marks four weeks since she had the seizure that resulted in the current status. The neurosurgery team is still convinced that the cancer is back and that’s what is causing the problems, but they just haven’t been able to “prove” it.

Regardless of what caused the seizures, four weeks is a turning point for the odds. If Juli doesn’t have “significant neurological progress” by Wednesday, then they are recommending we go the hospice route as even if she is able to eventually recover, and there is no cancer, her neurological status is likely to be so impaired that it wouldn’t ever be a “meaningful” recovery.

I feel like a broken record, but it’s a big week and we need lots of prayers. Juli’s recovery rests solely with her and God at this point as the doctors have her stable and are treating all of the various infections.

On a positive note, there was what looked to ME like minor neurological progress today. For the first time, the physical therapist sat her up on the edge of the bed, and although it was minor and her eyelid had to be taped open, she appeared to move her right eye toward me when we asked her to. She also might have been trying to move her head towards me. This is far from the improvement we need to see this week, but at least it gives me something to hold onto and be hopeful about.

Keep us in your prayers!