WHAT'S HAPPENING

June 2, 2009 "Five Years"

I recall an overcast day. Simon never got wet, but I remember sharing his towels with some of his classmates who stood, teeth-chattering, after a dunk in the tank or a splash in the tug-o-war tub.

I'm not sure which stretches the heart strings more--that it was Simon's last field day, or that it was his only field day. I try to remember instead how happy he seemed during his last days of school. His energy held up, and he did almost everything there was to do. He even walked several blocks the day after Field Day to a park for the first-grade picnic (although he did accept a ride back to school, a small concession to all the disease inside him).

June 4, 2004, was the last day of school. At home that evening, we made a video of Simon singing the Ice Cream Song. I take heart in photos and videos that remind me how good Simon looked and how much happiness he had, before things got so awful for him. Still, from happy-smiling-singing-coloring to dead in the space of two months--that continues to resist comprehension.

The Ice Cream Song may have been the very first video I posted on this site. There are several others that recall the Simon of five years ago. Take a look in the 2004 videos. While you're there, you might notice the one new video I posted in 2008--it's a Christmas tree moment from 2003.

Five years. In August, it will be five years since Simon died. But the anniversary thing gets going ahead of time in a sneaky way. Wait, I think, it hasn't been five years yet. I don't have to feel the five year feeling (whatever that is)--not yet. But it's a whole year of it. Now we've had five of everything without Simon: five of Miriam's birthdays, five Christmases, five Springs, five of Simon's birthdays, five ends of the school year. Miriam is at the "break even" point: the same number of Christmases with Simon gone as she had with him here.

We broke with tradition in May this year and chose to travel to Germany over Simon's birthday. Miriam and I have felt the discombobulation of no lemonade stand, no cemetery visit. We did make it to the cemetery for our Memorial Day picnic tradition. As for the trip to Germany, it was time. Markus had a conference in Istanbul, and we snatched up low airfares so that all three of us could go to Berlin (Markus' sister Christina and her parnter, Peter) and Stuttgart (Markus' parents). Markus flew down to Turkey from Stuttgart while Miriam and I saw the sights and visited with her Oma and Opa.

As I thought it through, whether I wanted to travel over Simon's birthday, I realized that if Simon were here, we would take the trip. And I decided to move forward as if he were still here. Did that strategy work? Not particularly. I'm slowly realizing that, no matter what we do or how we make our decisions, most things still don't feel "right."

And that, along with all the anniversaries that seem to burrow under my skin no matter what my conscious mind is doing, is pretty much what it feels like to live without Simon here. It definitely doesn't feel right.

January 2, 2008 "A New Year"

Writing about our story, about Simon's life, still drives my writing life. This fall, I've taken on the radio commentary form. So far, I've had no invitations to read on the air, but I've enjoyed the attempt to focus thoughts in a brief form (under 500 words).

In December 2007 I submitted a "This I Believe" essay to the Community Writing Center and local NPR station KUER. I also sent it to the national This I Believe project. That essay appears on the CWC website. You can also find it ("Hope is the sure conviction . . ." is the opening line) after a brief search on my first and last name on the This I Believe site, where a vast archive of these essays is collected. In my "rejection" notice from the national site, I learned that fewer than 1% of submissions are selected for broadcast. The local station has promised to select essays for broadcast by January 14th.

I have also reworked "Simon's Pumpkin", which first appeared as an update to this WHAT'S HAPPENING" page on July 25, 2007. Here's the current commentary-length piece. I'm still working on the right way to talk about different points of time in the past, as the past continues to accumulate while I write the longer story. As always, I welcome input. If you have been reading this site for a while, you are likely to recognize situations and material that appear in the essay.

Simon's Pumpkin

I still grow the pumpkin Simon brought home from first grade as a sprouted seed. The tiny plant sat in a styrofoam cup by the kitchen sink, bent and wan with its companion sunflower sprout. Some impulse of preservation possessed me to plant the two seedlings by our backyard fence.

This fall, the fall of 2007, the fourth generation sprawls across the yard. I remember how I first encountered Simon's pumpkin. It was mid-May 2004, and Simon had missed a whole month of school. He had endured a painful growth in his jaw, the first visible, palpable protrusion of cancer lurking inside since he was four. The tumor propelled Simon into a week of radiation treatment--strapped flat on his back like a mummy, pinned under a tight-fitting mask, and left repeatedly in frightening isolation with the beam-throwing machine. Radiation stopped the tumor's assault, but it raised an already harsh life with cancer to a new level of torment.

When Simon arrived back at school, the morning was underway. He stopped short of the classroom, too shy to enter. His teacher shot me a "what now" look. I shrugged. I urged. Then all twenty-three first-graders swarmed into the hallway around their classmate. Simon inhaled the affection, and I, crouched beside him near tears, felt his head burrow into my shoulder. "I hate it when Simon isn't here," lamented one friend, a spokesman for all.

The children's welcome rushed over me again this summer while I tended the garden. Simon's seed, which the class had planted for him, had sprouted first, they reported. At the time, it seemed no surprise that Simon's seed had special magic. Now, I carry a riper view of rapid growth, having witnessed cancer gone wild.

Simon's pumpkin and sunflower grew side by side that first summer. The cheery orange-yellow pumpkin flowers burst open every morning until one day we discovered a mottled green sphere below a broad leaf. I think it was the size of a grapefruit in early July when Simon lost interest. My attempts to show him the plant--to break into his boredom and distract from his misery--met with disdain. Not that I blame him. Even with his indifference, I felt a connection between Simon and his garden, a place of promise beyond his presumed lifetime.

"Save the seeds," said Simon's hospice nurse one morning near the end. "That's Simon's pumpkin. Grow it every year."

And I have. The sunflower, too, whose first rust-brown bloom opened the day after Simon died.

Like a bee I hover over the plants, inspecting every flower. When I discover a pale green ball, fertilized and starting to swell, I relax a little and wonder if this one will grow to Jack-o-Lantern size. Or if I'll make soup, or another pie inscribed: We miss you Simon.

Each year's vines emerge from the earth like cords reaching into the present from an ever receding past. Something is preserved, some part of the bond begun when Simon's embryo found my uterine wall. The plants grow, heedless of the ache I need their help to bear. And I measure the distance between my reality and the one I imagine in other first-grade homes, where seedlings shrivel by the sink while children play in the summer sun.

There are a few specific places where I seek ideas:

How would you describe the color and appearance of the sunflower? (Scroll down for a photo.)

Any thoughts on keeping the flow of time straight? I've written this from a "present tense moment" that was last fall. As time passes, it will be further away. Still, I want to preserve the moment.

You can email me or post to the MESSAGE BOARD with any ideas!

July 25, 2007 "Simon's Pumpkin"

I'm guessing the planting was sometime at the beginning of June when school let out, although I don't recall exactly. I do remember how we first learned about Simon's pumpkin. That was earlier in May, when Simon returned to school after missing a whole month. To recall the exact context as I reported it then, you can look at WHAT'S HAPPENING May 2004, especially the entry from May 13, 2004.

Thinking back from the vantage point of today, when I am now growing the fourth generation of Simon's pumpkin, I recall Simon's return to school with tenderness. He had been gone for more than a month, during which he had endured a painful tumor in his jaw, torturous radiation therapy to treat the tumor, and collateral damage to the sensitive tissues of his throat. More on that story is on the WHAT'S HAPPENING April 2004 page, in particular the April 17, 2004 entry.

Simon and I arrived at school on Monday, May 13, 2004 after classes were already in session. He was shy and unwilling for his classmates to see him hooked up to a mini-pump in a backpack dispensing pain medication. Principal Brian Conley intercepted us in the hall and welcomed Simon back. He sensed Simon's unease, and together we decided to take him off his pain pump. Then Simon got closer to the door of his classroom. Even without his pump, he could not step into the classroom, so he lingered almost out of sight in the hall. My encouragement was no match for his resistance.

After a while, Ms. Eaton shot me a "what are we supposed to do now" look. I probably shrugged. Then, like a sudden breeze forming in the midst of calm air, all twenty-three children joined their teacher and pushed out into the hallway, forming a loose, vibrant embrace around their beloved classmate. Simon took in all the love of this moment and I, kneeling beside him and probably in tears, felt his head as he burrowed into my shoulder for strength. I was struck by the depth of the children's affection for Simon and the restraint they showed by not touching him, not talking too loud, not overwhelming him in his fragility.

The memory of the children's welcome rushed over me last week in the garden as I tended the pumpkin, and I remembered how one classmate excitedly reported to Simon about their projects growing seeds and that in both projects, Simon's seed, which they had planted in his behalf, had been first to sprout. At the time, I must have felt unsurprised that Simon's seeds had some special magic--didn't he always seem magical? Now, I have a riper view of abundant growth, having witnessed cancer gone wild. Growing fast is not always praiseworthy.

Simon's pumpkin and sunflower grew side by side during the summer of 2004. The pumpkin plant sent a long vine directly south along the fence, aimed straight at the back side of our house. Its cheery orange-yellow flowers bloomed until one day we found a small, mottled green pumpkin starting to mature. I think it was the size of a grapefruit in early July when Simon lost interest in the plant. At that point my attempts to show him the plant--meant to break into his boredom and distract from his pain--met with his disdain. Not that I blame him. Even so, I felt a connection between Simon and his little garden, a place of promise beyond his presumed lifetime. I could see the pumpkin plant from the balcony outside our bedroom, see it growing steadily toward us, a friendly greeting, while Simon rested out his last days.

One morning close to the end, I mentioned the garden to Simon's hospice nurse. She looked out the window and said, "That's Simon's Pumpkin. Save the seeds. Grow it every year."

And I have. The sunflower, too, which bloomed the first time the day after Simon died. It bloomed a rich, somber rust-brown, like a church bell knelling Simon's death.

Sunflower with pumpkin plant growing toward the house. The pink hand (Simon's hand in clay) marks the spot of the pumpkin. August 9, 2004	Miriam and the pumpkin. August 9, 2004
Sunflower in late afternoon light. August 9, 2004	Portrait of a pumpkin. November 18, 2004
Pumpkin ready for seed-saving. November 18, 2004

In the summer of 2005, our friend Elizabeth Ballantyne and her sons David and Daniel made a luxurious pumpkin patch of their front lawn. Their yield was bountiful, and just before Halloween they wheeled over a load for us to carve up as Jack-o-Lanterns and make into pie. Of course I saved the seeds. I also saved seeds from our largest pumpkin, although ours had grown much more weakly. At Halloween, we had one mature pumpkin and five runty ones. We took the little ones and carved them each with a letter of Simon's name and put them out with our Jack-o-Lanterns. The things we think of as we grasp for some way to keep Simon part of our celebrations! That was the Halloween that Miriam tripped and broke her wrist while trick-or-treating. And, yes, the roses are still in bloom for Halloween out here in Utah.

Halloween 2005

In 2006, I delayed planting seeds. Maybe I didn't want to. Maybe I was too depressed. I did finally, in the middle of June, stick a few sunflower seeds into the strip beside our driveway and a few pumpkin seeds into the narrow herb boxes next to the garage. I guess I was trying to leave the grass alone that year. The sunflowers did fine, and the pumpkin plants grew rather sickly. By November I had one pumpkin to harvest, an elongated pale orange squash that dangled from a vine growing up the fence. We had to buy our Jack-o-Lantern pumpkins. But I saved the seeds, and I think I made a pie (or soup?).

In a misunderstanding late summer, Markus had cut back the sunflowers and thrown them all in the trash bin, which was emptied by the City before Miriam and I had a chance to save our seeds. Being the resilient plant that they are, those sunflowers seeded themselves and came up on their own this spring. I transplanted them to a bed on the east side of our house, a bed that we've ignored until this year. The first flower bloomed last week, and the second opened a few days ago. They're both bright yellow. I keep looking for that burnt brown again.

My pumpkin patch this year is back where we grew the original pumpkin. I cleared a spot, just one foot by two feet, and added a little soil. Then I pushed in three rows with about five seeds each. The first row was 2004, the middle 2005 (both mine and Elizabeth's), and the third row was my shriveled seeds from 2006. And guess what? The seeds from the original pumpkin came up first and strongest. But all three rows had at least two sprouts. Now there's a tangle of plants reaching out across the grass. They have started to flower, and the first tiny pumpkins have appeared. It seems I check daily, if not more often, to see how they are faring. Will they blossom and get fertilized? Will they wither and drop off? I welcome the plants' help in carrying my despair and my search for hope. I think we will have some nice pumpkins by late October. I hope I can find joy in watching them grow.

At one end of the new pumpkin patch is a marigold that started out as a seed in little painted pot Miriam gave me for Mother's Day. We planted her squash plant from first grade next to the marigold, but it died. Just yesterday, after two months in the ground, the marigold showed its first bud. My friend Kate gave me an incredulous look when I told her about Simon's pumpkin. She said it must be about the only pumpkin from first grade that didn't die in its cup next to the sink. I wonder. Yet I know that Simon's pumpkin has received my devotion because I cannot give it to him. It is much better for parents, I think, to rejoice in their withered plants and busy children.

Simon's pumpkin is growing in the gardens of a few neighbors. If you'd like to grow it, too, or his sunflower, please let me know, and I'll figure out a way to get some seeds to you. You can email simonandfamily@umich.edu. And, just so you know, Jodi's sign still rests above the garden, quite faded but still sweet.

December 10, 2006 "Uncommon Milestones"

In the cancer world, I found I was counting that way again. "He was diagnosed two days ago with cancer." Or "It's been 12 days since his last chemo infusion." Or "He's 56 days post-transplant." Since Simon's death, I have found myself counting the moon as it grows full and recedes. The first full moon after Simon's death (August 6, 2004) was on August 30th, two days after we held Simon's memorial service. Markus, Miriam and I went away together September 1-5 that year, and I recall watching the low, silver-white moon cross the sky outside our bed and breakfast room window on those long nights. It was a beautiful light, and it began my feeling that somehow Simon's life force comes back to me in reflection from the moon. The current moon now waning is the 29th moon since Simon died. (Anyone as curious about the phases of the moon as I am might enjoy http://aa.usno.navy.mil/data/docs/MoonPhase.html.)

Today takes on many aspects of our unusual ways of marking time. Miriam was born on September 20, 1999. Simon was 28 months old. (To be exact, he was 2 years, 4 months, and three days old. For anyone as obsessed with relationships between dates as I am, you might enjoy the date calculators at http://www.timeanddate.com/date/duration.html. Anyone who likes to watch cute kids in action can take a look at a little video of Simon welcoming Miriam home on September 21, 1999 here.)

When Simon died, he was seven years old. Seven years, two months, and twenty days. From that moment, I have been aware that, one day, his little sister would pass him by in age. That day is today. Miriam is a beautiful, healthy seven-year-old girl. She is able to do so many more things than Simon could do, especially in the final months of his life. Without cancer care as the driving force in our home, Miriam can focus on the fun work of being a first-grader, learning to draw with charcoal, learning to dance, playing with friends, petting our cats.

Today she is singing in church with the children's choir. She's got her festive Christmas outfit laid out on the end of her bed, waiting for her to wake up and join the other kids in performance. As I lay sleeplessly in bed early this morning, my fingers once again tapped along my thighs to help my mental calculations of the passage of time. I've done the math in my head several times. Now Markus has verified it all on a nifty internet tool. Mapping one child's life onto the other's as we so often do, today is the day in Miriam's life that Simon died.

She said it herself earlier this fall when she was comprehending that she is now seven years old. "If I was Simon, then I'd be dead now." We cannot underestimate the impact of a sibling's death on the psyche of surviving children. She does not obsess, but she takes note and seems to live somewhere between clinging to the shreds of her own innocence and acknowledging all the trauma she has lived through.

Most mornings we still all end up in the big bed. Simon used to come over with regularity around 1:30 am. He would bring his sippy cup of water and his pillow and politely ask from the foot of our bed, "May I come into your bed?" He crawled in the middle. Later on, MIriam would wander over, too, and snuggle on my other side. Constricting as it may have sometimes felt, I have never regretted those days when I woke up as a "mommy sandwich" between my two sleeping children. This morning, Miriam flopped restlessly with a stuffy nose in the middle of our bed, waking both me and Markus past the point of going back to sleep. I walked around the bed so I could snuggle into the 6 inches of mattress remaining next to Markus. And I told him my thoughts. Today is the day that Miriam gets older than Simon.

I lay there and let the tears stream down my face, taking comfort from my husband and feeling his sadness, too. A narrow rectangle of silvery moonlight shone through the skylight onto the empty side of our bed. Two years, four months, and three days ago Simon exhaled his last breath in that same bed. Come to think of it, Simon died at 5:04 am, which is about the time that I was permanently awake this morning.

Today we embark into new phases of parenting. We've never had a child this old before. I know we'll figure out whatever it is we need to know, but I sure do miss Simon paving the way for his little sister on the paths of life.

August 3, 2006 "Anniversary Approaching"

We have just been on a trip out to points in the Northwest where we attended a lovely 50th Wedding Anniversary celebration for my Aunt Betty and Uncle Fred Tabbutt. We spent a weekend with the Tabbutt clan, as well as Julie, Ralph, Nathan and Margot (my sister's family). It was a pile of kids--thirteen in all. To help the children get better acquainted, my uncle created a photo scavenger hunt along the "nature trail" at the back of their property. The children were sent to find the photos and then write down first and last names of all the kids (Tabbutts, Tanels, Vodoseks, Lautens, and summer exchange student Andrei!). In a gesture that we found lovely and bittersweet, my uncle included a photo of Simon. Most of the Tabbutt kids never got to meet him, but my nephew Nathan (on the boys team) and Miriam (on the girls team) could tell everyone who Simon was.

I am grateful to be part of a family that chooses to remember Simon openly and lovingly, including him with all the other children. In a post to the MESSAGE BOARD on July 29, 2006 Laura Seasholes refers to the scavenger hunt. I had fun talking with Laura at the party--we hadn't seen each other since early college days. It turns out, she was Lexi's second grade teacher in Seattle last year (my cousin Curt and Lawrie's daughter).

I wish I had the energy to tell more about us, about our summer, about new layers of grief. But I don't. This summer has been a hard one for me, and the anniversary effect feels overpowering. I will share again when I can. Thank you to everyone who is sending love and support. It means as much now as ever.

July 1, 2006 "Dragonflies!"

For the past couple of months, we've been working on overhauling our "park strip," which is a strip of lawn 25 feet wide by 5 feet deep along the street edge of our property. It's technically owned by the City and contains the gas and water lines for our home. When we bought the house in 2003, a large old silver maple burst its space in this strip to the ruin of the sidewalk and street gutter. After two years, we were certain that the tree was in fast decline, and we had the City remove it last November.

This spring we began the process of having the curb and the sidewalk replaced. After that we were able to have a new tree planted in June. We chose a Zelkova Serrata "Green Vase" (a Japanese elm known to do well here in Salt Lake City). We find this tree especially meaningful because it is the same species as the tree that Simon's Vodosek granparents dedicated in his memory at the Botanical Garden at Hohenheim University in Germany (see the tribute here). Our new tree appears to be a fine specimen, already tall enough to extend several feet above our second-floor balcony.

With the new tree and new sidewalk came the chance to redo our "park strip." Around here, many homeowners choose to remove traditional sod (grass) lawns and replace them with low-water plants, a practice known as "xeriscaping." The City was kind enough to tear out the sod for us while they removed the damaged sidewalk and curb.

With the help of a design drawn up by Franci at Xeriscape Design (an opportunity we got by bidding during our NPR station's recent auction/fund drive), we headed off a few weeks ago to the stone yard to get some small boulders. We "planted" them into our curb strip shortly after the tree was settled.

Today was our day to get the plants that Franci specified. Many were unfamiliar to us, so we were curious to see them. It's late in the season for planting, and we had to try a few nurseries to pull together most of what we needed. Franci followed our wishes for lots of colorful flowers, especially Simon's favorite color magenta. We were most pleasantly surprised to discover the plant called Mojave Sage. It is highly aromatic and has mauve leaves around spikes of blue-purple flowers.

After supper, Markus, Miriam and I went out to put the plants into the ground. As we began to dig, we noticed a couple of dragonflies, playfully darting about the sky over our front yard. Soon, there were more. Their wings caught the early evening light and flashed. Perhaps they were attracted to the sage plants, too! As we worked, the swarm of dragonflies grew. They kept darting about, just over our yard. A few neighbors came by to admire our new plants and watch the dragonflies at play.

Of course, we think of Simon. The dragonflies zipped about over the driveway, just like Simon on a scooter or on his bike. They teased each other, playing tag. Later, I asked Miriam if she thought they were Simon and his friends coming to visit with us. She saw something even more beautiful than that. She told me the dragonflies were all flying about to draw lines to form a picture of Simon--Simon wearing his favorite tie-dye T-shirt outfit (see Miram's drawing from 2004).

Just the other day at the swimming pool, I saw a dragonfly. I remembered how in the early months after Simon died I thought every dragonfly was him coming back for a visit. As time went by, I felt that kind of "magical" presence less strongly. But I chose to let it come again the other day at the pool, and I noticed that life just feels better when I decide the dragonflies are Simon. And what a visit we got tonight!

The moon is waxing for the 24th time since Simon died. We are always thinking of him, always looking for ways to keep his spirit in our lives, in our gardens, in our dreams.

May 10, 2006 "Not even a quarterly update for you this year!"

Year number two has a pretty "bad" reputation in grief circles. It's the year when the numbness of year number one wears off, when the pain of the loss can become more intense, when the reality of the loss becomes harder to evade. We are now well along in year two. May 6th came and went without any of us noting that it was 21 months since Simon died. I had a day full of rehearsals and voice teaching. Miriam had a soccer game and spent the day with Markus doing stuff. As I recall, we had a fairly quiet evening together at home.

The moon is waxing toward full now for the 22nd time since Simon died. We are starting to see the length of a moon cycle diverge slightly from our counting of the months. I still wonder if or when I will lose track of the moon. So far (with the help of my trusty moon calendar), I'm still counting. Right now the moon is high and visible above our house in the early night sky. I've also spotted it lately during the late afternoon, floating white against a Utah blue sky.

In the remembering Simon area, we've been busy, publicly busy. Of course, we are always remembering Simon at home. We still light candles the same way we did at his memorial services. The photo at left shows the candles lit by Simon's friends when we had a birthday gathering at our home last May at the time of Simon's eighth birthday.

May 17th is around the corner, and we are gearing up for Simon's birthday next week. We'll be celebrating again this year with our second annual Simon's Birthday Lemonade Stand. We are excited about the attention our lemonade stand is garnering. On May 3rd, Markus, Miriam and Mary gave a live radio interview at our local NPR affilate, KCPW. We were joined on air by Liz Scott, mother of Alex Scott (founder of the lemonade stand movement). You can listen to the interview here.

In April, we remembered Simon in a wonderful new way. On April 14, 2006 we went up to Brighton Ski Resort to dedicate a newly named ski run: Simon's Way. I posted information about that event in a new page on this site: Named After Simon. Markus hatched the idea and made all the contacts and arrangements to have this naming take place. It was a touching event, covered nicely in local television and print news.

I want to close this update with a glimpse into the lead-up to Mother's Day. Miriam seems to be especially aware of this upcoming day, partly from a planning surprises perspective (lucky me!) and partly out of sensitivity to my feelings of missing Simon on Mother's Day. She is now 6.5 years old and wrapping up her kindergarten year with a firm grasp on handwriting. Here's the note she left on my pillow last night at bedtime, a note she created without any assistance.

January 5, 2006 "A New Year"

I hate the new year. Well, maybe that's too strong. But I am really struggling with the passage of time. I resent that time in its ever forward march is taking me further and further away from the time that Simon was here with me. When 2005 began, I knew I was entering a year that never held Simon. Now that 2006 is here, I feel even further cut off. This year isn't even one that *touched* a year that Simon was in.

My memories and feelings about Simon are all bundled together in a fierce tangle from which I am unable to let go of the terrible parts while holding on to the wonderful parts. I imagine that is the ongoing work of grief and mourning and that there is little I can do to influence its pace besides do my best to stay present and feel all the feelings.

One year ago, I was writing in a journal of thoughts to Simon in the wee hours of the morning. I know this to be the case because I can flip to the page in the journal, not because I can remember doing it. I had recently begun to convert our analog videotapes into digital files for editing, thanks to a Christmas gift of a 250 gigabyte hard drive to store the huge files. Memories of Simon at various parts of his life were vivid (for some examples, take a look at Memories in Audio and Video).

I want to share a bit of what I wrote that night as a recollection of New Year's one year ago. One observation I would make about last year compared to this year is that I seemed to be in a dreamier place last year, where it was easier to feel optimism about keeping Simon's memory alive. They say in year two, the "numbness" tends to be gone, leaving the mourner less "protected" from facing the reality of the loss. My grief seems to be following that pattern.

January 2, 2005 Dear Simon, . . . I am sad to be in a year that never had your living, breathing, loving body in it. In all the ways I can, I will try to feel your spirit in this new year, and in the years to come. . . . I MISS YOU. I honor the you that I can see with the help of the videos. You were a scintillating presence in this life. We always felt and enjoyed your amazingness. You never appeared to be a blank surface, dulled to the world around you. Always alert, always finding sparks of fascination.

Two years ago, at the beginning of 2004, Simon was with us. The memories stack up that way, too. One year ago was the first year without Simon. Two years ago, he was here . . . I noticed a lengthy entry in the WHAT'S HAPPENING Archive describing all our doings that year, including our trip to San Francisco for a consultation at UCSF and our visit at Pixar Studios. That year began on a precariously optimistic note, with the bad news of extensive disease progression discovered later that January.

Another memory of New Year's 2003/2004 comes from an intergenerational church service held at First Unitarian Church of Salt Lake City with our beloved former minister, Silvia Behrend. We were all encouraged to write down a wish for ourselves for the coming year. We wrote them onto postcards, which were mailed out to us in May of the same year to remind us of what we had been wishing. I saved the card that Simon wrote to himself.

I remember Simon standing at the front of the church that day in late December 2003 and speaking into the microphone that his wish for the New Year was "No more cancer." Looking back, I fall prey to the easy traps of grief: what if that was the wrong wish? Why didn't he wish to stay alive, whether or not he had cancer? Would that have helped him live longer? But I also remember how strongly he voiced his wish, and how he continued to articulate it over the next months. I know that Simon got his wish. He was ready to stop living with cancer. No, he didn't want to die to be free of cancer. But that is how it happened.

Looking much farther back in time, I came across a photo of our happy New Year's Eve gathering when 1999 became 2000. Gee, does anyone else remember all the uproar about Y2K? We were in Ann Arbor, and our footloose friends (i.e., not yet with kids of their own) came to our house to celebrate so we could put the kids to bed and have some fun after they were asleep. Our guests were Anne Adams and Tom Schnauber (the dear friends to whom we entrusted the task of escorting Simon to the hospital to meet his new sister) and John and Tammy (my memory is faded on their last names!). The photo shows everyone holding musical instruments because we were having a New Year's Eve parade, no doubt at Simon's suggestion. Simon, then two and a half, appears to be chewing on a marshmallow, but it's actually the lower end of a slid whistle. Miriam is three months (look at the way she used to bite that lower lip!).

This year our New Year's Eve celebration was a quiet evening at home. Markus made delicious fondues (cheese for the main course, chocolate for dessert). After that, the three of us snuggled up in the TV room for a few rounds of the Monkeyball video game (which was Simon's--Miriam gave Markus a new controller for Christmas to replace a broken one, so now we have three again). After that, we watched the film "Monsters Inc." and remembered our trip to the Pixar studios two years ago with Simon. It was fun to see the movie again and especially fun to observe Miriam's reactions. She chuckled heartily at various points, and I think she's really getting the jokes now! We still love the "Outtakes," and we remember many happy family movie nights with Simon.

Miriam is learning a lot about numbers at school, and we talked about the new year being 2006. Suddenly, it occurred to me that Miriam is 6 in the year 2006, until she turns 7 in September. She was born in 1999. So, her age will always be the same as the year, or plus one after her birthday. It felt funny that I had never noticed that before, since it has always been the case. I guess life is like that.

WHAT'S HAPPENING Archive

Simon's story, and that of our family as we live on without him, appears on this Web site in reverse chronological order. Anyone who wants to see the whole story can scroll down to the bottom of this archive and start there. We have listed the treatments that Simon underwent in the short summaries for each archive link in case other families facing neuroblastoma want to take a look at Simon's experience as a point of reference.

The second half of 2005 has come and gone. We hit the one year point since Simon's death on August 6th. We celebrated Simon's memory with a concert by the terrific group Two of a Kind at Utah's Hogle Zoo. Miriam has started kindergarten, Markus continues to work hard as an assistant professor, and Mary is doing a little teaching (voice and German) and pursuing her interest in writing.
July-December 2005

Miriam finishes preschool. We celebrate Simon's birthday on May 17, 2005 with an outpouring of community love and support during a Lemonade Stand in Simon's memory. We travel to Oberlin for Mary's 20th college reunion and on to Ann Arbor to hold a second memorial service for Simon on June 3rd. Mary attends a writers' workshop in Salt Lake City.
May-June 2005

Acts of mourning continue as life also moves forward. Mary travels to Denver and meets the bereaved family of Becca Lockler.
April 2005

The pace slows. We reach six months since Simon died, then seven. Mary and Miriam travel to Ann Arbor for the first time since Simon died.
February and March 2005

Working through grief; working on life; trying a few new things.
January 2005

Approaching "the holidays" without Simon and marking time with the moon.
December 2004

Our fourth month without our dear Simon included a busy and rewarding celebration of Simon's legacy with the music duo, Gemini.
November 2004

Life without Simon crawls along. Memorial tributes of all kinds are underway, from Simon's Memorial Fund to friends and family holding events in Simon's honor.
October 2004

Life without Simon creeps along.
September 2004

Simon died on Friday, August 6. We held his memorial service on August 28, and we established the Simon Craig Vodosek Memorial Fund to honor his beautiful spirit.
August 2004

The month began with Simon's wonderful Celebration of Life Party. As his disease progressed, he slowed down more and more, but he hung in there for the whole month.
July 2004

A wonderful end of Simon's first-grade year (June 4) leads quickly into a rapid progression of disease with increasing pain and weakness. Our focus is on pain control and other comfort measures to allow Simon to enjoy his remaining time.
June 2004

Recovery from radiation side effects and enjoying good energy to get back to school. Second course of temazolomide/irinotecan. Simon turned 7 on May 17!
May 2004

CEP-701 trial abandoned after 4 weeks because of further progression; begin palliative treatments to ease symptoms of jaw tumor and general disease, including radiation and chemo with temazolomide/irinotecan.
April 2004

Chemo abandoned after further progression; begin CEP-701 phase I clinical trial at UCSF
March 2004

More chemo (round 2 topotecan/cytoxan)
February 2004

Disease progression (widespread in skeleton) discovered during work-up at Memorial Sloan Kettering Cancer Center; begin salvage chemo with topotecan/cytoxan
January 2004

Begin accutane (vitamin A derrivative to fight neuroblastoma); consultation with Dr. Kate Matthay at UCSF
December 2003

ITP (immune-mediated thrombocytopenia purpura) continues; limited ability to treat cancer
November 2003
October 2003

Irinotecan/vincristine at home
September 2003

ITP chaos
August 2003

Onset of ITP (immune-mediated thrombocytopenia purpura) AND move to Salt Lake City
July 2003

3F8 monoclonal antibody therapy at Memorial Sloan Kettering in New York
June 2003
May 2003

Exploring monoclonal antibody therapy; prepared with topotecan/cytoxan
April 2003

Irinotecan/vincristine in the treat then evaluate mode
March 2003
February 2003

Still recovering from MIBG therapy
January 2003

Finally starting kindergarten!
December 2002

MIBG therapy
November 2002

Recovering from transplant
October 2002

Stem cell transplant
September 2002
August 2002

Surgery
July 2002

Several months of topotecan/cytoxan in the treat, scan, evaluate mode
June 2002
May 2002
April 2002

Mixed response to therapy--taken off COG A3973 after 4 chemo cycles
March 2002

Stem cell harvest (to be purged)
February 2002

Diagnosis and starting treatment
December 2001/January 2002