SIMON SAYS Archive February 2002
February 26, 2002 "Decisiveness"
At the library today, Simon piled up 11 videotapes to check out. The last one to make the cut was called "Really Fast Trains." As we were leaving, Mary commented that he would have a hard time figuring out which video to watch when we get home. He said:
"I know which one, 'cause I'm a good decider."
Mary: Which one?
"'Trains!' [pausing to think] . . . Maybe 'Arthur's Baby'. . ."
February 26, 2002 "Wishing Well"
"I wish I had a wishing well. If I had a penny, I could throw it in and wish I could be better. And I would be!"
February 26, 2002 "Wistful for Crystal Lake"
I (Mary) was telling Simon about a message from his Uncle Curt, in which Curt identified with Simon's interest in the fridge. Simon began to wish he could go to Crystal and see all his cousins. Tomorrow. I told him that we have to find the right time in the summer to see the cousins, who come from all ends of the country. (How will this year's family gathering interact with Simon's stem cell transplant and recovery, we wonder?) Anyway, he seemed to realize that we will have to wait a while before heading there. After a bit of a pause, he said:
"I miss Grandma Lee!"
I told him Grandmas Lee would probably come visit him here in Ann Arbor if he asked her to. He liked that idea, and he wants to rendez-vous with Lee and Max at the "house with all the beanie babies" (John and Diane's). Maybe we need to make a plan?
February 25, 2002 "The Serious Side"
Waiting around during an interminable-feeling morning for a CAT scan, Simon and Mary struck up a conversation with a young dad and 5-month old baby in the radiology waiting room. Explaining why he was glad he didn't have to stay overnight in the hospital after today's scan, Simon commented, calmly and matter-of-factly, that when he *does* stay over,
"I have to take these really strong medicines that make me feel like I don't want to live anymore. That's why I don't want to stay [overnight]."
(February 11, 2002) "A Kiss is the Best Medicine"
Mary: Simon, I have a headache.
"Here. [He kissed Mary's forehead.] That can make you feel better."
Mary (melting under this sweet gesture): Oh, thank you, Simon. (Expectantly:) Oh, Simon, when I kiss your forehead to make you feel better, does it help?!
February 21, 2002 "Reincarnation"
Simon began a fascinating discussion with me (Mary) of the cycle of life by recalling that people die when they get old. I wasn't able to notate more than the first quote below, so the rest of it is something of a recreation. Rather out of the blue (I am not aware of ever discussing the concept of reincarnation with Simon before), Simon asked:
"Mommy, when I die and then come back again, can I come out of you?"
I told Simon that mommies and daddies get old before their children, and they usually die before their kids. So, if Simon came back, it probably wouldn't be to me. Then I told him about how some people believe they might come back as something different, like an elephant or a ladybug. He seemed disturbed by that idea and said,
"But I don't want to come back as something else because then I couldn't be with people and I would be lonely. . . Mommy, I want to always come back to you because you're the best mommy."
[*Melt* went this mommy's heart!] Our conversation turned to my grandparents and that they are all gone and that Markus has one living grandmother, his Urli, whom Simon last saw in April 2001. I asked if he wanted to see pictures, and I grabbed the framed photos from the wall that show Granny and Gramp (Mary's maternal grandparents), Opa Alfons and Oma Mutz (Markus' paternal grandparents), and Oma Bichler (Markus' maternal grandmother). I told him that he had traveled as a five-month-old baby to Austria for the funeral of Oma Bichler. He asked to see pictures of the burial.
We got out a photo album and enjoyed many pages of photos of a jolly and active Simon at about 3-5 months. His Oma Irmi, now visiting with us from Germany, joined us as we flipped through the album. We reached the page with photos of the stunning flowers that adorned Oma Bichler's grave. I told Simon that Oma is sad to look at these photos because it was her mommy who died. Simon said encouragingly,
"Oma doesn't have to be sad, because she has grandchildren now!"
February 21, 2002 "Feeling Better in the Morning"
Upon awakening, Simon's real, live perky voice reappeared (after a night of rushing to the bathroom and grabbing for his spit-up bucket).
"I want to wake up with you, Mommy. Hey, I only have a *little* headache this morning!
Mary: What do you want for breakfast?
"Cereal, and pancakes. And I need my spit-up medicine* first, so I don't have to spit them up."
Reflecting on the night, Simon mused:
"I don't know how I did that. I spat up in the night. I didn't ate anything, and I STILL spat up!"
Before heading down the stairs, Mary asked Simon and Miriam (who had joined us for a cuddle), who was sleeping downstairs on the sofa. Both kids enthusiastically replied,
Simon added, as he jumped out of bed,
"I wanted Opa to come, too!"
[Hint, hint, Opa.]
*Simon's "spit-up medicine" is a liquid suspension of the drug Zofran. We learned in January that Mary's sister Julie, a pharmaceutical chemist and manager, had developed that formulation in her laboratory at Glaxo several years ago. Our medical team is constantly singing its praises, and Julie has testified that it was a tricky formulation to get right.
February 20, 2002 "Tough Times"
Enduring a moment of gastrointestinal misery, Simon lamented:
"It's hard to be brave!"
February 20, 2002 "Grown-up Talk"
"I don't like it when people talk around me. I just want people to cuddle with me!"
February 20, 2002 "Plans and Negotiations"
Hoping to put a positive spin on the coming day, Mary had a bedtime conversation last night with Simon about things he might plan to do the next day to look forward to. He had a few ideas:
"Go for a little walk outside around the area here. Go shopping. Bake chocolate chip cookies. Go to the pet store to look at fish. . ."
This list sounded very motivating to Simon, so she told him he could look forward to a fun day. Wisely, he replied:
"We'll just have to see how I'm doing."
The next morning, Mary and Simon began to make the plans more concrete, working them into Markus' and Miriam's plans and needs for the car, etc. Simon was particularly insistent (at 6:30 am) that he wanted to go to the pet store, right away. When Mary suggested they could walk over there later in the morning and get some information about maybe buying fish, Simon got pretty persuasive.
"It's not really people go to the pet store to THINK about pets. They go to the pet store to BUY pets for them!"
"I want to buy them today, then I can more calm down!"
"Then I'm not gonna be your kid anymore if you don't let me buy them today!"
"Otherwise you might have to have a time out if you don't let me buy a pet!"
February 16, 2002 "Hungry Guy, Queezy Tummy"
Home from the hospital at long last, Simon spent the day looking for good things to eat, giving them a try, and almost invariably vomiting them right back out. His recent chemo cycle is expected to cause "delayed nausea." We hope it's over soon. He often perks up dramatically right after losing his cookies. This evening, after losing his attempt at cottage cheese, he accompanied Mary into the kitchen where he rummaged in the cupboard looking for food that might appeal. Then he asked to be hopped down from the counter so he could look around in the fridge. With great charm and a dazzling smile (amazing for a kid who's been feeling SO yucky), he said:
"I'm a fridge sort of man!"
February 15, 2002 "A Practical Guy"
In the hospital, Simon often receives a lot of IV fluids to flush the strong medicines out of his system. Consequently, he has to pee a lot, and we keep a diaper on him at night "just in case." Last night he asked to get a new diaper because his was a little damp. When Markus told him that this was a good idea, he said confidently:
"Yes, I'm SMART!"
February 14, 2002 "Really Good Blowers!"
At bedtime last night, Mary asked Simon to "blow out the lights", an old tradition at bedtime. He said:
"I can't! My blower-guys are too tired! They're fast asleep."
Much perkier this afternoon, Simon was having a Valentine's celebration with Markus and Mary in his hospital room. We put temporary tatoos from a Valentine card on our hands and arms. After applying the tatoos with a damp cloth, Simon blew on them to dry them out. This time he said:
"I can blow for you! I have really good blowers!"
February 13, 2002 "A Particularly Talkative Simon"
Mary spent the day with Simon in the hospital during a boring and nauseating chemo week, and Simon had a lot of interesting things to say.
"I wish I could be in preschool yet."
[He later told Mary he wants to go to preschool "because they teach you how to write."]
"I know who makes people have babies in their tummy: God."
Mary: Do you want your hard boiled egg?
"Maybe later. I don't want to throw up right away."
Simon's chemo regimen this week involved large amounts of IV fluids to keep him well hydrated plus a diruetic to keep him peeing every hour or so. These measures are intended to protect his bladder and kidneys from damage caused by the anti-cancer drug cisplatin. After sleeping at night for a while, he woke up for a big, urgent pee. Settling back into his pillow and blankets to return to sleep, he said with a sigh of contentment:
"Thank you, bladder, for getting it out! ZZZZZZZZZ. . ."
February 13, 2002 "Picturing the Giver"
Reading the inscription at the beginning of the lovely book "Pelle's New Suit", a gift to Simon for his 4th birthday from his daycare provider Linda, Simon said:
"Every-each time I read a book that someone gave me, I think they are the one that wrote the story and made the pictures!"
February 2002 "Miriam Says Great Things, Too"
A recent hospitalization for Simon led to a 36-hour separation for Mary and Miriam. Since Miriam still breastfeeds several times a day, this was a long break. Without access to a pump, Mary just waited it out and collected Miriam at the end of a day-care day. They were very glad to see each other, and Miriam had a big "drinky." After the drive home, Miriam crumpled her nose and said:
"No like drinky. Taste like yucky ice cream!"
A little later, still a face showing discontent:
"Drinky taste like buttermilk!!"
Miriam has always been quite discerning and has easily identified breastmilk that was "too spicy" after a meal involving chile peppers. Mary has never heard that breastmilk can sour in the breast, but according to Miriam, it can!
(January 29, 2002) "A Wistful Moment"
(Here's one we overlooked back in January.) Wishing he had a friend to play with, Simon sighed and said:
"Sometime, I want tot go to a different city. . . I want to go to a different planet and live there. . . I want to drop by the ice cream store."
February 8, 2002 "An Early Valentine"
This morning during an echo cardiogram (a heart-function test using ultrasound) Simon closely watched the computer screen and asked questions of his technician, Mike. At one point, the screen lit up with red and blue. Simon learned that the computer adds the color red to show blood moving in and blue to show blood moving out of the heart. Toward the end of the scan, Mike placed the probe just below Simon's sternum. Simon looked at the image and said,
"Look, I can see the point at the bottom of my heart!!"
February 8, 2002 "Sharing"
Simon's Grann shared this story with me today. During her last visit, she watched Simon unpack a wonderful box of surprises from Mary's high school friend, now a pediatric oncologist, Sarah Friebert. In the box he found a bag of individually wrapped plastic rings with big candy "gems" (to suck on when his mouth is sore). Feeling generous he said,
"I have a lot of these. Would you like one, Grann?"
February 4, 2002
Reclining on a guerney while In transport from one end of the hospital to the other, Simon had a perfect view of the glittering blue sky as we went through a glass-roofed connector. He said:
"I like it when there are no clouds."
Thinking about all her own reasons to love a sunny, cloudless day, Mary inquired: "Why is that?"
"Because you can see the sky better."
February 4, 2002
"I had a funny dream when I was napping in the bed next to Miriam [a couple of nights ago]. I had a dream about an alien, and he liked to eat things with the wrapper on, like this candy [Starburst]!"
February 1-4, 2002 "Crazy!"
When Mary taught Business English in Germany, she worked on how people "acquire a new lexical item". Simon has shown all the signs of mastering the term "crazy", and he seems to take great pleasure these days in using the word.
"I'm busted" OR "You're making me busted!" is a new term Simon coined last week, and he said you can use it:
"When you can't find something, or someone is making you crazy!"
It works on puzzles and parents!
We have talked a lot about the big job that Simon and his body (and the doctors, nurses, Mom, Dad, everyone) are doing to make Simon get well from his cancer. So, en route to the hospital early Monday morning for his stem cell harvest, Simon said:
"But do you know what my most important job is?"
Fully expecting a statement about fighting cancer, Mary asked, "What's that, Simon?"
"My most important job is helping out that crazy girl Miriam when Mommy and Daddy are both busy!"
Mary: "What crazy things does she do?"
"When I'm getting my shot, she keeps looking, and jupming up and down and bouncing and being crazy!
February 1, 2002 "Sibling Love"
When Simon was discharged from the hospital late Thursday afternoon, we asked him if he wanted to go straight home or stop by Linda's house to pick up Miriam. He got a smile on his face and said, "Go to Linda's!" It was a little after the regular pick-up time, and Miriam has experienced a lot of variety and mystery in who picks her up since Simon's cancer treatment began. When we got to Linda's house, Simon went in the back door. Miriam saw him and walked right over to him. Then she gave him a big, gentle, warm hug. She pulled away form a moment, and then went right back for another hug!
It was truly a loving moment for a brother and sister facing unusual challenges in their own lives and in their developing relationship. Perhaps their relationship involves more tension and "acting out" than before, but they are also showing great compassion for each other. Miriam says, "Simon not feeling so good" with great understanding in her expression and voice. Simon looks for fun things to show her and thinks through her care situation. He noted yesterday that if Mom goes to Yoga Class and Dad is with him at the hospital, Miriam will be left without a parent at home. Fortunately, Miriam had the pleasure of Gran's company for the evening!
February 3, 2002 "Amelia Bedilia"
Recently, we noticed that we missed a show we had planned to see at one of our favorite local children's theaters (Youtheatre in Southfield, Michigan). The show was "Good Driving, Amelia Bedelia and Other Stories". Instead of voicing dismay, Simon (who had read and incessantly requested A LOT of Amelia Bedelia stories after Miriam got a book for Christmas), said,
"That's OK! I didn't want to see that crazy Amelia Bedelia anyway!!"
February 3, 2002 "The Cough"
"That was close! I almost coughed myself away!"
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