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Day Zero.

It wasn't just a coincidence that my mom and I were unexpectedly served a red velvet cupcake at lunch today. Red was his favorite color, and we served red velvet cake at his Celebration of Life. This was a message from him. The message was, BE ALIVE.

One year ago today was Day Zero. The “before” was over; the “after” hadn’t quite started.

One year ago today was the day that started with a quick trip to the pediatrician to get my son treated for a persistent cough, and to ask some questions about his unusual bruises. One year ago today was the day that ended with a diagnosis of leukemia.

One year ago today I drove from the pediatrician’s office to Children’s Hospital. Most of that drive, my mental mantra was, “He’s going to be ok. He’s going to be ok. He’s going to be ok.” But for one brief moment, just as downtown Minneapolis first came into sight, I remember thinking… “If Julian died, I would die. I would not be able to function. I would JUST DIE.”

One year ago today I thought I would literally die from grief if one of my children died.

But today, I am alive.

Today, thanks to Julian, I understand more about being alive than I could have even imagined a year ago. And for that, I am grateful.

One year ago today is also the day that I started Julian’s CaringBridge site. You can read about that day, and the days that followed, in my CaringBridge Journal.
 
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Posted by on February 16, 2012 in the second six months

 

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A good day.

It’s been a while since I wrote a blog post. And I know people have been curious. How did the holidays go? How does it feel to be approaching the one-year mark? What does “normal” feel like these days?

The answer to each of these questions is, it depends on the day. As I’ve said before, the best question to ask is, how am I … today? I’m happy to report that today was a great day. One of the best days ever, in fact.

Today. January 29, 2012… my husband John and I attended the Bocuse d’Or USA 2012 competition in Hyde Park, NY. John and I both have a passion for gourmet food, so for us it was like having box seats at the super bowl. The winner, Richard Rosendale, was just announced a couple of hours ago and will represent the USA in the 2013 Bocuse d’Or in Lyon, France — the Olympics of food — one year from now. The judges of the event were culinary royalty, and we met most of them personally. It was one of the most exciting days of my life.

As exciting as today was, I can can’t help thinking about one year ago today. January 29, 2011… John and I returned from a business conference and noticed that Julian had some unusual bruises. That was the first night that we sensed that something wasn’t quite right. We didn’t know it then, but we were right on the cusp of the worst thing that could happen to a parent. Oh what a difference a year makes.

So, yes. I could dwell on that milestone. I could let my brain go back to that day and the weeks that followed. I could re-live all of that pain. It wouldn’t be hard to do. But yet again I’m reminded of one of my core beliefs: I can choose to focus on what I have lost, or I can choose to focus on the gifts that each day brings. As Pema Chödrön says, “Moment by moment we can choose to go toward further clarity and happiness or toward confusion and pain.”

Some days, like today, it’s relatively easy to choose to go toward happiness. Today, I have the strength to keep the negative emotions at bay, and feel gratitude for the wonderful things that have happened in the past year. Not the least of which was becoming friends with Chef Gavin Kaysen, who represented the USA in the 2007 Bocuse d’Or and will be the 2013 team’s coach for the coming year. It’s because of Gavin Kaysen that we were able to attend the prestigious event today. And it’s because of Julian that we met Gavin.

Here’s how it happened: Last spring shortly after Julian died, my dad was in NYC and went to Gavin’s restaurant because he’s friends with Gavin’s dad and was curious to meet his friend’s famous son. He asked to meet the chef, and they chatted for a while. My dad described how much his daughter and son-in-law appreciate gourmet food, and he also shared Julian’s story. Gavin, being a father of a young son and with another on the way, was moved by our story.

As it turned out, Gavin was coming to Minneapolis a few weeks later to cook for a fundraising event. One thing lead to another, and he and my dad came up with a plan for Gavin to come in a day early and prepare a meal at my house as a very special birthday gift from my parents to my husband John.

On July 22, 2011, Gavin arrived in Minneapolis and came to our house to spend the day cooking with John, and prepare a wonderful multi-course meal for us and our best foodie friends. We’ve considered him a friend ever since. Our friend, the world-class chef and Bocuse d’Or USA head coach.

I share this story for two reasons. First, because it was exciting to see Gavin in his glory this weekend, sitting at the head table with Chef Thomas Keller, Chef Daniel Boulud, and others. And second, because I believe it is important to celebrate the good things.

None of us needs to be reminded that sometimes bad things happen to good people. But good things happen to good people, too. Life is full of good things and bad things, big things and small things.

The question is, what do I focus on? Do I wallow in my grief and think of January 29, 2011? Or do I feel grateful for the exciting day that was January 29, 2012? Or better yet, do I look forward to John and I joining Gavin in Lyon, France on January 29, 2013? I think you know my answer.

I will never forget that I have suffered an irreplaceable loss. But I will not let it prevent me from having a life that includes joy, wonderful new friends, and once-in-a-lifetime experiences.

 
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Posted by on January 29, 2012 in the second six months

 

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The myth of the “five stages of grief”


We’ve all heard about the five stages of grief, right? Many of us have them memorized, or could name at least two or three of the stages. But, do we know where they came from? Do we know what they are based on? Does it occur to us to question whether or not they are based on actual research? Nine months ago, my answers would have been no, no, and no.

But here I am today, almost nine months after Julian‘s death, with a whole new perspective. As I mentioned in one of my early blog posts, one of the first things I did after I came out of my initial shock was ask a friend, “What are the 5 stages of grief, again?” I wanted a roadmap for my future. I wanted a to-do list. Then, I learned that the theory of “The Five Stages of Grief” — also known as the “Kübler-Ross Model” — is neither based on bereavement nor scientific research. Surprised? I was. So I decided it deserved another blog post.

I wasn’t just surprised, I was disappointed when I learned the facts about Kübler-Ross’s five stages. I was mostly disappointed because I liked the idea of having a map or path through this process, which I could follow and track my progress through a journey that by definition (I assumed) had a beginning, middle, and end. But I was also disappointed to learn that these five stages had become conventional wisdom in the field of psychology and mental health without any scientific research to back it up.

So who was Elisabeth Kübler-Ross, and where did these five stages come from? In the ’60s, she was one of the first psychologists to dedicate her career to working with terminally ill patients. She became a respected lecturer on the topic of how nurses and doctors could/should interact with their terminal patients. Because of the uniqueness of her work and her lectures, she was offered a book deal. It was then — after signing her book deal, and with a deadline looming — that she came up with the stage theory.

She wrote her book based on her work (not “research”) with terminally ill patients (not “bereaved people”). That first book, On Death and Dying, was published in 1969 and was interpreted as fact, and also turned her into a bit of a celebrity. Perhaps it was because of her sudden fame that she didn’t go out of her way to point out that the five stages were simply her “theory,” not proven through research. But in reality, as the introduction to the 40th anniversary edition says, “It is essential to note that … On Death & Dying is not a work of research. It is a popular book of description, observation and reflection based on a series of dialogs with dying people.”

The unfortunate thing for people like me is that the “conventional wisdom” of the five stages has made a negative impact on our experience of grief (as if it weren’t bad enough to be grieving in the first place). One of the most helpful and interesting books I’ve read in this past 6 months, The Truth About Grief by Ruth Davis Konigsberg, confirms what I have experienced: the embrace of the “Kübler-Ross model”…

“…has actually lengthened the expected duration of grief and made us more judgmental of those who stray from the designated path. We have been misled by the concept that grief is a series of steps that ultimately deposit us at a psychological finish line, even while social science increasingly indicates that it’s more of a grab bag of symptoms that come and go and, eventually, simply lift.”

Kübler-Ross, standing on the shoulders of Freud before her, set the foundation for today’s understanding of grief. Unfortunately for all of us, this foundation is fundamentally flawed. To quote The Truth about Grief again:

“a subject that is not supposed to be discussed… is the possibility that grief may be finite. ‘There is no timeline for grief,’ is how the advice books and web sites put it. Even the concept of recovery itself is seen as a misleading elusive goal. Though Kübler-Ross identified acceptance as her final stage, implying some kind of end point, she also said that you could never fully close the chapter on grief. “The reality is that you will grieve forever,” she concluded in On Grief and Grieving. “You will not ‘get over’ the loss of a loved one; you will learn to live with it.” This undoubtedly may be true for many, but the grief movement has taken that statement to mean that no one should ever get over such a loss, although that rule seems to get more strictly applied to women than men.”

Did you catch that last part? That rule seems to get more strictly applied to women than men. For me personally, it’s the judgement of myself and others (real or imagined) that has been hardest part of my grieving process. After those first couple weeks of shock, my instincts told me to focus on moving forward — but I couldn’t stop the voice that would pop up in my head that questioned, “Wouldn’t a ‘good mother’ actually never move forward from losing her child? What does that say about me that I want to survive this? What will this say about me if I’m actually successful?”

Now, almost nine months later, I don’t ask myself those questions anymore. I know there are people who read this blog, or see me going about my day, and ask those questions in their head. (“How can she work? How can she be functional? How can she be smiling and laughing? If my child died, I wouldn’t be able to do any of those things. She must be in denial.”) These people worry that I’m not grieving correctly, and someday it’s going to finally “hit me.” The reality is, the only “denial” I experienced was Julian’s last day in the hospital. I was in absolute denial that he could die. Until he did. (You can read about that day on his CaringBridge site.)

I believe that the concern about denial and other judgement is primarily based assumptions about the stages of grief, and society’s expectation that no one should get over the loss of a child (especially a mother). But the truth is, both science and my natural instincts tell me that those people (including Kübler-Ross) are wrong.

We all need to re-think and re-discover what grieving really looks like. 

 
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Posted by on December 1, 2011 in the second six months

 

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The six-month milestone.

Here it is. Six months. Some call it an “angelversary.” Or as a wise friend said recently, “I like to think of it as his birthday. His new birthday. The day he was born into whatever comes next.” I like that. Happy six-month new birthday, little one.

For me and my family, it means six months of the “after.” It’s the six-month milestone of “new normal.” In charts and graphs about grief and bereavement, it’s often the first milestone in the timeline, like this one from The Other Side of Sadness by George Bonanno (yellow highlighting is mine):

I first saw this chart, and the book that contains it, around the two-month mark. It meant so much to me to learn that science shows that bereaved people fall into one of three categories — chronic grief, recovery, and resilience. Until that point, I’d only found memoirs and books written by therapists that made it seem that most people were chronic grievers who only reached a sense of “recovery” after years of therapy and support groups (if ever).

Turns out, many of us — perhaps even most of us — fall into the “resilience” category. It’s hard for researchers to know for sure what the percentages are, because these aren’t the people writing memoirs or visiting therapists for years on end, and therefore aren’t on the radar of the therapists and grief counselors who are writing books about their work.

I wrote a lot about The Other Side of Sadness in my two-month blog post, and it seems fitting to revisit it again now. One of the most fascinating details about the scientific research described in this book is that they studied people both before and after their loss. Because of this, the researchers were able to discern the difference between someone who started displaying frequent and prolonged grief symptoms after their loss, vs. someone whose personality and outlook on life was grief-like even before the loss.

The researchers were able to identify personality traits of each group that were apparent before and after their loss. My friends and family would probably agree that the traits observed in “resilient” people sound a lot like me (and my husband, too). The research showed that resilient people are:

  • optimistic
  • flexible (can share AND suppress emotion)
  • can find benefits, and believe that “the world is basically a decent place, and life is good”
  • have a support system of family and friends
  • are “able to evoke comforting memories of the lost loved one”

With six months behind me now, I have a new appreciation for Mr. Bonanno‘s observation that “the human inquiry into the mysteries of life and the nature of the soul is acute during bereavement. When a loved one dies, we have no choice but to face up to nearly imponderable questions…. Many of us discover, in fact, that we have found something quite profound hidden in the experience.”

I’ve now had six months of “facing up to imponderable questions.” I wholeheartedly agree that “the mysteries of life and the nature of the soul is acute during bereavement.” I’ve pondered the imponderable. I’ve inquired into the mysteries of life. I have a new understanding of what it means to be human, and what it means to be alive. If there could possibly be a silver lining to this experience, that’s it.

I’ve survived six months of the after. I’ve spent six months creating new normal. I don’t know where I’ll be in 6, 12, and 18 months from now, but I know I’m resilient. And I know my future will be filled with happiness — because I choose to make it that way.

 
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Posted by on September 3, 2011 in the second six months

 

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It’s time for a new chapter in the American history of death.

For much of our American history, it was not uncommon for a family to lose a child. Disease, childbirth, war, and lack of hospitals made it unusual for a household *not* to have been touched by death in some way.

Despite the frequency of death, or perhaps because of it, grief was not discussed in those days. Grief was expressed in the appropriate times and places, such as at a funeral, but it was not discussed. Our American ancestors were never urged to go to group therapy to revisit their loss… over, and over, and over.

Then, there were two important changes in our country’s history. First, the medical world made significant advances: hospitals became more accessible and more sanitary, vaccines were discovered and distributed, and diseases became more curable — resulting in fewer deaths. Second, death became a topic of interest among philosophers and psychologists, who suggested that death had become an “unnatural taboo” which caused repression of emotion that would surely cause damage to one’s mental health.

On one end of the pendulum swing, in 1911, an article called “Facing Death” in Harpers Bazaar said, “Grief is self-pity. Perhaps if we were less centered upon our own happiness, grief over the loss of our beloved ones would not be the terrible thing that it is.” On the other end of the pendulum swing, the 1960s and 1970s brought about an emphasis on self-expression, talk therapy, and the overwhelming influence of Elisabeth Kübler-Ross‘s book On Death and Dying* published in 1969. By the late 1990s, it had become a widespread belief that people must “give voice” to their grief, or else it would fester. And now we do get urged to go to group therapy to revisit our loss… over, and over, and over.

In other words, death went from being a frequent occurrence with an expectation of limited outward expression, to being an infrequent occurrence with an expectation of significant outward expression.

Here’s why our culture’s history of death is of interest to me: I believe we must let the pendulum fall closer to the middle. I want us to all be thankful that the death of a child is so uncommon… but I want us to remember that it is not unheard of. I want us to respect those who choose to express their grief outwardly… but not judge or “worry about” those who don’t. I want us to remember that life is a gift… but also remember that death is part of the same cycle. I want us to honor the loved ones we have lost… but not lose ourselves in the process.

It’s time for a new chapter in our American history of death. In this chapter, we don’t expect people to die, and we don’t expect people not to die. We don’t judge people for expressing themselves, and we don’t judge people for not expressing themselves. We mourn the ones we have lost, and we celebrate that we had them in the first place. We remember the loved ones who have died, but we never forget that we are still alive… and we have a lot of living left to do.

* Note: I wrote about this book in one of my first blog posts, and I’ll be writing about it again in one of my next blog posts.
 
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Posted by on August 31, 2011 in month 6

 

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Red sunsets.

I feel like it’s been a long time since I wrote a blog post. Early on, I wrote because it was therapeutic and the writing process created a good structure for me to understand my own thoughts and feelings. Later, I wrote because I was reading books and discovering new things that I wanted to explore. Today, I’m writing just to share what’s going on in my life.

When I wrote my last blog post, I was at a cabin on a beautiful MN lake with my extended family. It was hard to be there without Julian, but it was a wonderful week. The relaxing environment and the beauty of the lake made me feel more peaceful than I’ve been since Julian died.

Almost immediately after leaving the cabin at the end of the week, I longed for more. I instantly missed that peacefulness the lake inspired in me, and I had a whole new appreciation for getting away and having focused family time. John and I talked about it, and we decided to consider buying our own cabin. We started researching our options.

I have now viewed hundreds of cabins online. Both Minnesota and Wisconsin have beautiful lakes within driving distance of our home. We want something small, and certain details are important to us — for me, feature that is most important is that the cabin must be West-facing. I need to be able to see the sunset.

My whole life, I’ve sought out the sunset. I’ve planned vacations specifically to see the sunset over the ocean. I’ve strategized the best reservation time to watch a sunset from a restaurant. My boys would sometime’s tease me about needing to “watch mommy’s sunset.” If we are going to buy a cabin, a beautiful sunset is a must.

Two weeks ago, we rented a cabin that is also for sale. It had wonderful ’70s modern architecture that reminded John and I of our own house… but most importantly, it had what the owners describe as an “Aloha sunset.” We were only there for 2 nights, and I was so disappointed when the first night was cloudy. I could see a glow in the distance where the sunset would have been, but not the real deal.

The second night was beautiful. It was, indeed, an “Aloha sunset.” As I sat there on the shoreline, I watched John and Oscar fishing right off the dock (and actually catching fish!). It reminded me of the times when Julian was John’s fishing buddy, as shown in this cute photo, and this one too.

I was entranced as I watched the sky change from blue to purple to orange and red. When the red tones came out, it hit me. THIS is why sunsets are important to me. The red sky, the beauty of nature, the cycle of sunrise to sunset, the cycle of birth to death. THIS is where I feel close to Julian’s spirit. His favorite color, red, is what makes a sunset beautiful.

From now on, every time I see a sunset, I will think of my sweet boy and the beautiful things he contributed to my life. Hopefully, soon, we will own a cabin with a sunset of our own. Until then, all I have to do is look at the photos I took (like the one shown above), and I feel peace.

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UPDATE ON 8/10/11: This week we made an offer on the cabin I mentioned in this post, and it was accepted! Now we will own that sunset — and the sweet little cabin that looks out over the lake. We look forward to creating wonderful family memories there.

 
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Posted by on August 8, 2011 in month 5

 

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Julian + Daddy.

Today is Father’s Day. Today I’m remembering and appreciating how Julian’s too-short life was filled to the brim with love and attention from his daddy.

I wanted to share some photos that offer just a glimpse of the special connection they had. Sadly, I never caught a photo of them in the kitchen together (Julian loved to watch John cook) — but the ones of them fishing together are some of my favorites…

S L I D E S H O W

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G A L L E R Y
 
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Posted by on June 19, 2011 in month 4

 

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