Posted July 3, 2005. Please click on the small photos embedded in the text to jump over to photo galleries containing 108 images from Simon's party. We are grateful to Liz Martin and Julie Lautens for all the photos they took at the party!
A year ago on July 1, 2004, we gathered our energies, and especially Simon's, for the party in the back play yard at the Unitarian Church. Simon arrived with his colorful lawn chair, hooked up to his pump for dilaudid, likely on an every six or eight hour oral dose of methadone. The pain that needed to be controlled was mostly in his head, eyes, legs and trunk.
The guest list was entirely of Simon's choosing, and most of his invited friends were able to be there. Visiting family also were present: Oma and Opa, Grann, Simon's Aunt Julie (Craig Lautens) and cousins Margot and Nathan. Some moms and school staff were there, too. Principal Brian Conley, secretaries Stephanie Saenz and Marianne Mueller, Simon's teacher, Merla Eaton.
Following Simon's minimal, but specific requests, Kaleidoscope Kids director Chris Colossimo was ably assisted by volunteer Frances Greer and her daughter in doing all the work of inviting guests, decorating along the Yugi-Oh and Pokemon theme, and providing the foods that Simon requested: hamburgers (grilled on the spot by Frances' daughter) and cake with vanilla ice cream and colorful sprinkles.
At the time, and even more so in hindsight, we have marveled at the gift of this party to all of us. Kaleidoscope Kids is an outreach program of Community Nursing Services (the non-profit that provided Simon's homecare and hospice services). The program's goal is to reach out to children "with a life-altering illness." They provide a party budget along with a volunteer to coordinate the party, plus some staff support. They were good at helping us predict the right time for the party, not letting Simon grow too ill to enjoy it, but also not rushing ahead with it, either. We know we never would have, never could have, pulled off a party like this one on our own. They did such a good job of honoring Simon's wishes and making the event meaningful, enjoyable, and therapeutic for everyone there. We are so very, very grateful. We encourage others to consider providing similar outreach to other families that may be facing a child's final weeks of life. The gift is truly enormous.
The day of the party, Simon's eyes were hurting. So was the top of his head. He was weak and tired and did not try any walking at the party. First, he held court from his lawn chair in a shady spot near the building. He talked with small groups of guests. Later, he distributed gifts to his buddies. He handed out precious 9-packs of Yugi-Oh cards to each child. There was great clambering about to see and sort the new cards. Simon, I think, felt very privileged to show so much largesse to his friends. The idea of having gifts from Simon to his friends came entirely from our wise party planners.
On July 1, 2005 Liz Martin wrote to us with the following recollection of the same day last year. Her daughter, Elise, had come to the rescue by donating a couple dozen rubberbands to the cause so that the kids could have a way to keep their new cards (she happened to be wearing them as bracelets). Ian Martin's birthday is on July 1st, and he graciously rescheduled his party last year to accommodate Simon's special day.
"Just wanting to say HI and let you know that I'm thinking of you today; Simon's Celebration of
Life party is linked to Ian's birthday in my mind. Another reminder to celebrate life with gusto,
and always carry a supply of rubber bands :-) xoxoxo Liz"
The guests at Simon's party arrived eager to spend time with their friend and always up for a party. They had been told that this was not a party for giving gifts and that it was a time to spend time with Simon. I don't think any of us had ever been to a party quite like it, and we all needed to adjust to the idea that the party was for a boy who was very sick. Simon had last seen most of his friends when school let out on June 4th. He had grown much weaker in the intervening four weeks, and the tumor bump on his head was much more obvious.
During Simon's party, one of Simon's classmates, Michelle Ngo, asked Mary some questions about Simon.
Michelle: "Is that bump on Simon's head a tumor?"
Michelle: "Is Simon going to be OK?"
Michelle walked away to digest this bit of sad news.
Before the meal was served, the whole group crowded under the shade of the big playground tree, as Marcus the Funny Man Who Does Tricks set up his impromptu stage. We were caught by pleasant surprise at the hilarity of this act--his magic tricks and juggling really a ruse to allow Marcus to make side-splitting jokes. Simon sat with Markus and me on either side and Miriam near my lap. We laughed together. We released buckets of tension and paused our dismay at Simon's rapid decline. We found our way exactly into the space of this refreshing afternoon, this time of being fully with Simon, of moving his infirmity off stage and letting life and friendship and generosity and laughter and love be the stars of the day.
When it came time for the food, the tasty hamburgers moved aside soon for cake and ice cream. A fascinated Simon watched the colored sprinkles melt in drippy rainbows down the sides of the ice cream on his plate. I'm sure he had seconds.
Toward the end of the party, Simon was provided with a second stash of gifts to distribute among his friends. I think he did his best to avoid playing favorites and find something each child would like. I remember coming home with a big bottle of bubblebath and something Miriam was looking forward to putting in her hair. I think some of the kids made second trades with their gifts.
For most of the people present, it was the last time they saw Simon. Some of the children talked to me about how Simon was doing, and how his illness made them feel worried and sad. Tobias Rosenberg shared his thoughts on Simon's pain pump. See the Memorial Fund Donors page to see what Tobias had to say.
As we were packing up at the end of the party, a discussion ensued about the best means of transporting the balloon bouquets home. It was mostly Markus, who wanted to stick several bouquets together into the trunk, and Simon, who felt squishing more than one bouquet into the car would put the balloons at too high a risk for popping. the discussion got heated, repetitive, entrenched. At one point, Simon put his foot down. "It's my party. And I get to say what happens!"
He was right, dammit. And that moment showed me what was probably the most important part of the entire afternoon for Simon. It was his party. A celebration of his life. A time for him to call the shots, when disease was robbing him daily of function, control, comfort. For all of us, it was a chance to honor Simon and bask in the aura of his presence. To linger with the things that Simon loved the most. To feel him. To laugh with him. To watch him laugh and escape, a little, from his pain and his many losses.
* * * * * * *
That evening, Simon requested a trip to Blockbuster to pick videos. Of course I took him. Julie and Margot went, too. In the store, he walked on his own, straining to see through his bulging, sore eyes; fighting for strength to walk on his emaciated legs. Perhaps he picked Digimon. That was a big favorite in July.
After Blockbuster, Simon asked for sprinkles and ice cream. It necessitated a stop at Albertson's. I have a recollection of also buying watermelon and orange juice. There were problems at the self-check-out. Simon struggled to keep his calm, sounding abusive of me as he barked his needs. My sister watched, pained, and called me a saint for all I put up with. I felt like nothing of the kind, this small trouble spot clearly taxing Simon beyond his depleted reserves.
I felt so proud of his initiative about the things he wanted to obtain to keep him comfortable and happy. I would have done anything to make it happen.
Now, one year later, I look back on this magnificent day spent enjoying the fleeting company of Simon. Wonderful things and people and ideas came together that day. Simon was beautifully honored. The gravity of his illness was acknowledged. It was clear that we all needed to drink in his presence and begin to think in earnest about his dying. Although he would not talk about it directly, Simon also seemed to know he was running out of time. I do not think he ever told his friends, or later even us, a direct good-bye. But he soaked us up, and I am certain he felt the importance of this day, even if he didn't want to waste precious time talking about it.
It is strange to look back on the desperate time of the final 5 weeks of Simon's life and to feel that nothing could have been done to improve the way things happened. Oh, how I wish he had never become ill. Oh, how I wish he could be here, getting ready for tomorrow's Fourth of July activities. Yet, I savor what was. I feel the incredible love that surrounded Simon and all of us.
I weep at all the trials endured by my sweet boy, and I ache from missing him. Through all the tears, I rejoice in his life.
If you have a recollection of Simon and his Celebration of Life Party, please share your thoughts on the MESSAGE BOARD or write to us more personally at email@example.com