MEMORIAL SERVICE

Reflections on Simon's Life

How can anyone capture the essence of a person in a set of remarks? How can a life be so short and yet so full, so wonderful? Well, I came up with these remarks by jotting down thoughts about different ways to describe Simon. Then I sat down at the computer, and I typed.

Markus and I weren't sure how to approach this part of the service--should we read remarks ourselves? Have a friend read for us? Have Tom read for us? In the end, I couldn't think of a way to make these comments without speaking in my own voice. As a back-up, I have Tom here, whom Markus has called "a professional sad occasion speaker." And Tom is ready to step in if my own voice and composure fail me.

For the children here, I found I needed to use some bigger words as I wrote these remarks. Don't worry. I can explain anything later that doesn't make sense to you now.

I found a few words that seem to describe Simon very well. He was an amazing person, from the very moment he came into being, all throughout his life, and now, still, in our memories.

Simon the Vivid

Simon loved the sparkly and the colorful. We are gathered here today in festive, bright colors to celebrate his spirit. I chose to wear this intense pink dress as a tribute to Simon, remembering his magenta winter jacket, his fabulous raingear, his tie-dye t-shirts, and his many brightly colored drawings, Lego creations, and beadwork. He and I enjoyed color together, and he would point out great color combinations to me: "Mommy, see how these two colors are working together!"

I believe that Simon sparkled from the moment he came into being as a gestating fetus. In August 1996, I recall feeling a "ping", like a shining light, near my right ovary. Within two weeks, I knew I was pregnant. (That moment, by the way, occurred on a futon on the living room floor in my brother David and his wife Jocelyn's Princeton duplex.)

In the fall of 2001, a few months before Simon was diagnosed with neuroblastoma, he and I collaborated on the design of a new sweater for him. I had been making fun, little, colorful sweaters for my nieces and nephews, and I was enjoying the chance to knit for my own children, too. I got out oodles of colorful cotton yarn and began to experiment with combinations all over our living room floor in Ann Arbor. I took about twenty colors and wrapped them around a piece of cardboard to test them out together. Simon participated with interest. When he noticed two shades of grayish brown, he told me to leave those out. I was reluctant, thinking I needed some neutral colors to help the play of the brighter ones. He insisted. So, the neutral colors went back into the basement, and I was left with a riot of color in my knitting basket. I proceeded with the project, making my blues into the "neutrals" for this sweater.

I completed the sweater during the first months of Simon's cancer treatment, knitting many hours in the hospital with him. His final design request was for a rainbow up the front. So, I replaced my idea of a plain blue band with the rainbow he asked for. That wonderful sweater still fit Simon this summer, and he wore it often and proudly.

Looking back on Simon's life, it seems that even before we knew he was sick with cancer, he knew that he didn't have time for brown and gray.

Simon was an avid observer and a good scientist. He often expressed his desire to be "a scientist, a chemist, and a mathematician." He loved to watch nature videos like "Bug City" and "Really Wild Animals." His enthusiasm was boundless as he called our attention to a roly-poly bug on his palm or discovered the tricky hiding places of the reptile house inhabitants at the zoo.

My earliest recollection of Simon the Observer goes back to when he was just a couple of weeks old. We were sitting at the breakfast table, and Simon was stretched out on my lap, nursing. He suddenly stopped. I looked down and saw an arresting expression on his face. He seemed to be thinking, "Wait a minute. Hold everything right now! This is major. The very plates of the earth are about to shift." And then he pooped into his diaper. It might have been Markus' and my first experience with a blow-out up to the neckline of his onsie.

As a budding scientist, Simon visited science and natural history museums from coast to coast. In Oberlin, he visited his Granddad's chemistry lab, where he did glass blowing and other exciting things. Thanks to the innovative curriculum in his kindergarten in Ann Arbor, he pursed two "focus studies" on chemistry.

Simon had an early fascination with math and numbers. I remember one bus ride with a neighbor in Ann Arbor where Simon, then in kindergarten, did some simple sums. Our friend was so impressed and asked Simon how he learned to do that. "My fingers taught me" was his simple reply. In recent months, he and I had many discussions of the concept of infinity, well popularized by Buzz Lightyear's "To Infinity and Beyond!"

During this past year of first grade at Uintah Elementary in Ms. Eaton's class, Simon learned to write and to read. He did not enter first grade with a grasp on either task, but he ended the year with a stack of wonderful writing and a newfound love for reading. On the evening of his last day of school, he sat in the kitchen and read aloud from his poetry notebook. He commented on the marvel that reading is: "I just look at something, and foosh! I can read what it says!"

Notwithstanding his strong interests in math and reading, Simon's favorite subject in school, two years in a row, was PE (or gym, as they said in Ann Arbor). Boy, did he love to run around and play! During the past couple of years, he was learning to play baseball. You may have seen him happily run the bases at our church picnic in June. Simon also loved to play tag, and we often picture him now, having a fabulous time on the huge play structure in his heaven, calling "Nah nah na boo boo, you can't catch me!

Simon also had his many favorites to play with at home and at friends' houses: Bionicles, Transformers, Yugi-Oh and Pokemon cards. As a younger child, Simon played with his winged beanie babies. Most of them were birds, which he flew around the house incessantly by holding out their wings. His favorite was his pteradactyl, about which he wrote a story at school in first grade. Pteradactyl used to faithfully accompany Simon for naptime at his Ann Arbor daycare with Linda. In his final days this summer, we made sure that Pteradactyl was close by him.

Simon had a competitive streak, and he often found losing hard to take. He excelled in Memory and liked to play Candyland (if he didn't have bad luck) and Mastermind. When Miriam hit the magic age of four (at which one generally peaks in skill at Memory), Simon began to lose interest in a game where she was so good, so effortlessly. Even so, he told me once this summer that winning wasn't the most important thing. What's important is having fun.

Simon liked a good joke (especially when he was the one calling the shots). In early June, he went to the hemotology/oncology clinic at Primary Children's with a hidden water pistol. He had so much fun surprising his nurses and doctors with a little spray.

During his many hours at hospitals and clinics, Simon developed a fondness for video games. For his seventh birthday in May, we gave him his own Gamecube set-up. He was amazingly good at those games. The rest of us never stood a chance against him.

As a playful person, Simon could also be a major goof-off. I don't know if anyone else ever noticed this trait. We have so many photos and video clips with Simon making twisted faces and blowing raspberries at the camera. And who could forget his wonderful laugh? Take a moment and think about it.

Simon's Laugh

We Love to Laugh! March 5, 1998 Simon's Laugh May 27, 2004

Simon's strength shone throughout his life in many different ways. He always had a lot of stamina for having fun. He also had incredible strength as he faced his life with cancer. We have often heard praise for Simon's bravery. Yes, he was very brave. I think his bravery came from his incredible strength and self-knowledge.

Simon was able to endure difficult treatments and procedures in part because he developed such good coping mechanisms. He seemed to be able to take on any challenge, if he felt properly prepared for what was going to happen. He also seemed to discover early into his life with cancer that distraction was his preferred method of pain control. He was very engaged with the stories he watched on video and TV (just ask any medical professional who might once mistakenly have stepped into his line of vision or disrupted his Nintendo game for a quick physical exam!). For really tough times, when even TV was too much, Simon helped devise the best ways for him to cope--sometimes it was touch therapy, sometimes it was music, sometimes it was asking for more pain medication. His doctors were amazed at how well he directed his own care.

Something about Simon's love of life kept him going despite his advancing disease. In early June, Simon had a scan that showed extensive spread of disease compared with the prior month. In fact, Simon's radiologist expressed amazement that Simon was up and about and attending school, given the widespread cancer in his bones. I recall an evening in Ann Arbor when Simon ran around a playground with his friend Marley and Miriam. Later, he told me his leg was hurting. I commented that he didn't seem to be in pain out on the playground. "I didn't want to let it spoil my fun," he told me.

Throughout the course of his treatment, Simon remained very strong. He repeatedly underwent routine monitoring of heart, liver, and kidney function to ensure that the chemo and other treatments were not causing damage. To the contrary, his heart and his kidneys served him faithfully until he took his final breath.

Simon was a person who deeply enjoyed many things and who voiced his pleasure in wonderful ways. Family members may remember the purr-like "mmm" sound he made as he slurped up a juicy grapefruit or chowed down on a delicious pasta dish.

At his Celebration of Life Party in July, Simon enjoyed ice cream with colored sprinkles. He loved the taste, and he also loved to watch the colors drip down the sides of the ice cream and intermingle. He was inspired by the party and made many more requests for ice cream and sprinkles during July.

On the last weekend that Simon was still able to come to the table for occasional meals, he requested pancakes for breakfast a couple of times. Our friend Sally Blodgett Olson was visiting, and we were happy to linger over a nice breakfast. Of course, the pancakes had to be made from scratch by Markus. Nothing else would do. Markus and I remember Simon's comment as Markus carried him from the table on Sunday morning: "Mmm. That pancake was so good. With the syrup, and the butter. All together, so rich, so good." I'd call it an expression of ecstasy, and I'm so glad he could experience that feeling just a week and a half before he died.

Another activity that brought Simon pleasure this summer was family movie nights. Simon had plenty of things he liked to watch, like Sailor Moon, Yugi-Oh, and Digimon. He was never successful at getting the whole family to watch those programs with him. But he knew there were films we could all agree on. Pixar films like "Toy Story" topped the list. Sitting with us in the TV room, Simon would remark on how wonderful it was to be together, and he always insisted on watching the silly outtakes.

Another great pleasure for Simon was being read to aloud. His final months involved countless, cuddly readings of Magic Treehouse and Captain Underpants books. Simon's first-grade teacher, Merla Eaton, also visited regularly to read to Simon. Although he barely had the energy to talk or keep his eyes open, Simon listened attentively and complained if the reader ever stopped going. He once commented during his last month that "reading is the best thing there is." He also loved bedtime stories with Miriam. On the morning of Wednesday, July 28, Simon suffered a seizure that left him unable to speak and scarcely able to move. The day before, he had been extremely tired. But at bedtime that night, he had managed to nod his head clearly when I suggested reading a story together with Miriam. I knew it meant a lot to him because earlier in the summer he had called bedtime stories with Miriam "perfect."

One trait we always appreciated in Simon was his honesty. Simon didn't seem to have time for pretense. He dealt with people and situations head on. That led him to express beautiful, heartfelt sentiments as well as anger and disgruntlement. Simon had an irrevocable sense of fairness. If he had to go without breakfast for a procedure under anesthesia at the hospital, then the rest of us couldn't have breakfast, either.

He was also able to express unbridled happiness. We have recollections of many times when he burst for joy, saying, "I am having such a happy Christmas!" Or "I am having such a happy birthday!" It offers us a lot of comfort to know that he had a terrific Christmas (the first in our own house, with our own tree) and a super seventh birthday during this past year.

Simon's clear sense of emotion has also helped me grow more comfortable with expressing anger. Boy, could he get mad. And then he could move on and feel better. He even recognized the benefits of anger, saying that it felt "weird and good" in his body and that the good thing about anger is that it doesn't last forever.

Simon's expressions of love were equally heartfelt. He was a wonderful host, and he enjoyed inviting friends over for meals and parties. Many of the families of his classmates will remember phone messages from Simon with a polite request for a return call and a cheerful statement of his invitation and phone number. In July, Simon was insistent on having friends stay over for meals with him, even though he was scarcely eating himself. And the day that he advised our friend Sally to take a hike with Miriam and Markus--so that she could enjoy the wildflowers and fresh air--will live in our memories forever. Of course, we knew he was trying to arrange for some time alone with his mom, but we could also tell he really thought the hike would be good for Sally.

Simon was a loving big brother. Of course, sometimes he expressed his love with grabiness and loud demands for Miriam to change her ways (Mi-ri-am!!!). But he also expressed his love for her in hours of peaceful parallel play, side-by-side coloring, and coaching her as she picked up new skills, like riding a bike. I will never forget the day at the airport in April when we were reunited after Markus and Miriam had been in Europe for a family event and Simon and I had been in San Francisco for medical care. As Simon and I approached the meeting point, Miriam broke away from the crowd and ran toward him. The two embraced, and Simon swung Miriam around in a circle. He was clearly as happy to see her as he had been at the age of two when she joined our household as his "Mee-wam."

Simon understood a lot about being considerate, too. As his illness advanced, he grew very irritable, and sometimes he would yell at us and act as though we never did anything right. On one very difficult afternoon, I told him I would need to take a break because I just didn't like the way it felt right then to be with him. He was surprised. He pulled himself together and began to soften his tone and say please. After a few minutes, he asked if I was feeling better with his new way of treating me. Of course my answer was yes.

As a son, Simon offered wonderful love to his parents. He enjoyed sharing cuddles and kisses. He liked to receive and to give back rubs. And Markus and I will never forget the sheer delight of picking him up from daycare in Ann Arbor. As soon as he saw us, he would call out "Mommy!" or "Daddy!" and come rushing into our arms.

Many people have found Simon to be "wise beyond his years." Perhaps. He did come across as knowing things on a very deep level, but I wonder if it wasn't just his honesty that made his wisdom possible.

He had a great appreciation for irony. He loved twisted stories, like "Squids Will Be Squids" and "The Real Story of the Three Little Pigs told by A. Wolf" by Jon Scieszka and Lane Smith. At Uintah Elementary, he learned many songs he loved to sing. One was about the ice cream store. I got a great video sequence of him in June, singing the whole song, where a child asks the ice cream man to tell him all the flavors. After the exhaustive list, the child says, "Thank you, I'll have vanilla, please." Someone looks at the camera and reiterates the funny situation: "After all that, he just wants vanilla!!"

Early this summer, Simon was reading books as part of the King's English "Passport to Summer Reading." He eagerly gave his reports at the store to get something from the prize box. On a tired day for him, we took a walk to the store. Simon was riding in the jog stroller because he was too weak to walk. At the store, he launched into a report on the Magic Treehouse book "Vacation Under the Volcano." It was clear that he wasn't feeling well, and the clerk listened, ready to let him off with a brief report. As he spoke, he grew more and more animated and detailed. He reached the story's clever turning point with great enthusiasm. It was so beautifully clear that he had grasped the story's intricacy, and that the intellectual exercise took him away from his pain and fatigue.

Simon had an ability to see both sides of the truth. As a cancer patient, he made statements like, "I donŐt want to take the medicine because it's icky; but I DO want to take it to help me get better." Or, "I want to stay here in the hospital where they are taking such good care of me; but I also want to go home. How can I do both?"

And Simon had a knack for seeing the positive wherever he looked. Earlier this spring, he commented on the way up to the hospital for his chemo that, "The good thing about chemo is that it destroys cancer AND you don't have to get a haircut."

Simon's ability to see things from conflicting angles is perhaps nowhere better represented in the paradox of his cancer. His healthy body and spirit were very strong, but his cancer grew out of the same body, the same spirit. In the end, Simon's own strength fed the cancer that overtook his body and killed him. I know that I will ponder both the inevitability and the tragedy of his death for many years to come.

On August 6, the morning that Simon died, Miriam found many words for the feelings we all had. In the early minutes after his death, her mind seemed to race to find ways of keeping his memory alive. "We can think when we get new books that Simon is reading with us. We can also think when we play games that my brother's playing with us." In the late afternoon, we called the mortuary to take Simon's body from the house. Markus, Miriam, and I carried his body down our back stairs to the waiting van. We placed his body on the gurney and gave him our farewell kisses. As the funeral director deftly slid the gurney into the van and the three of us, along with my parents and our social worker, Tamber, stood dumbfounded at the sight of Simon being taken away. Miriam burst out, "I want Simon back!" She stood on the driveway and began to wave earnestly. We followed the van down the drive, blowing hugs and kisses, trying to understand what was happening. We all want Simon back.

Dear sweet Simon. I feel that I know you like the deepest inner chamber of my own heart. I will treasure you there forever. Thank you for coming to our family, to our world. I will forever be glad that I was your mommy. And, like everyone else here, I will miss you fiercely for the rest of my life.