Annika has discovered Nintendo. Lord help us all. I can already see Jörg getting out the car keys as soon as he reads these words. He's just been waiting for a child of his to be old enough to share the gaming passion, and thus to finally justify the purchase of an actual gaming system. I've got to give him credit: he hasn't played a game of Civilization or one of the approximately 326 Star Wars games in years, ever since our PC died and we decided it wasn't worth the money to replace it. What a patient guy.
Annika's great joy is the new Donkey Kong game. In the new age of initials-only cool, he now goes by "DK," and he has a whole simian crew. Her favorite part is the very beginning, when the DK crew do their rap. She's been concentrating very hard to learn all the words. It's kind of a long rap, so this does sap quite a bit of her mental energy.
Then, once the actual game starts, she mostly turns the little monkey ("Diddy Kong") in circles maniacally. There's no real "strategy" in her strategy game, but I'm amazed at how much progress she's made with the game control in just this past day. If anyone has any suggestions about games that are more age-appropriate for her or systems that have better selections for kids, I'd be happy to hear them. Are those V-smile systems worthwhile?
Annika's new preoccupation has left me with a little more luxurious time to get all introspective, and to notice how strange the shifts are from otherworldly isolation to immediate intimacy in the world of childhood illness.
Having a child in the PICU leaves you with a distinct sense of disconnection from the rest of the world. Whenever you leave the unit, it's like finding yourself walking on some alien terrain. Cell phone conversations overheard, laughter in the elevator, horns honking on the street outside, they all come at you as just so much incomprehensible noise. I found myself one morning standing in a Starbucks in the Lincoln Park neighborhood of our hospital, one of the more chi-chi neighborhoods of Chicago, when it occurred to me that I hadn't showered in 2 days and had neither combed my hair nor brushed my teeth before heading out for my caffeine replacement for sleep. In short, I was a mess. I didn't fit in at all
in the line of well-coiffed, well-dressed customers, and that felt just about right at that moment. As I stepped out of the Starbucks, I looked up on the roof of the hospital and saw the helicopter landing pad, its windsock stiffened and warning lights flashing. It just didn't seem possible that a helicopter could land there, on such a small space, much less a helicopter carrying my own little Annika a few days previous. The unreality of it all just leaves you with a feeling that you have somehow stepped out of the stream of life and can't quite figure out how to jump back in and swim with everyone else.
Then, swish, back in again. We were discharged over to the Kohl's House for transplant patients here at CMH. Suddenly we were living in a house with 7 other families, each with our own bathroom at least, but sharing a single kitchen area. There's nothing like sharing a kitchen to force a kind of immediate intimacy between people. Most of the families are eager to chat, to share their experiences with someone who has a similar story. But even the ones who keep their conversations to their own family unit reveal so much in what they say, without thinking of the others surrounding them, as if they were still home in their own kitchens. So, for instance, on the evening of our wonderful Thanksgiving feast provided by a well-known Chicago chef, a grandmother and mother came for dinner. "What? There's no gravy?" asked the grandmother. "It's over there. On the stove." replied the mother. "You mean that lumpy stuff
? How long has this been out, anyway?" And just like that, a relationship laid bare for all to see.
And scenes like these:
A father, shuffling around the kitchen, still hunching over a bit from the discomfort of having donated a portion of his liver to his son. He's making breakfast for himself and his son with the radio tuned to the station that is already playing Christmas songs all day. He is singing along.
A mother up at 7a.m. on Thanksgiving morning, already cooking so that her large extended family can have a Thanksgiving together as usual, but this year at the Kohl's house. When I see her she is meticulously rinsing the leaves of some exotic looking plant. Two hours later she is still working on this dish, which apparently requires some 52 ingredients. Later that afternoon someone happens by the kitchen and asks her about the dish sitting on the counter. "Oh, it's something I made." (laughs cheerfully) "But nobody liked it. Help yourself!"
A little girl about Annika's age comes into the kitchen. She's still wearing her warm, winter hat - a sure sign that she's lost her hair to chemo. Her mom comes into the kitchen a few minutes later. She's not wearing her hat anymore - revealing her head proudly shaved to match her daughter's.
A father, mother, and grandmother enter the kitchen together. The mother prepares a plate for the grandmother, who stares ahead, waiting for her dinner. She does not prepare food for herself or the father. Not one of them speaks. The father puts his head down on the table, covering his face. The grandmother eats a few bites and pushes the plate away. The mother covers it with plastic, as if they will be back to eat it later. Two days later, it still sits in the center of the table.
It's something like being too close, seeing these moments that are so revealing. But it's also those moments that pull you back into feeling a part of life again.
And there's my super-fantastic little girl, too. The girl who, after I said "It's good to be free!" as I unhooked her from the I.V. pump she is tethered to for 18 hours of the day, replied, "It's great to be ME
!" She does an awfully good job at making sure I don't go all sad sack.
She's been having a grand time here at the Kohl's House. After the sorrow at saying good-bye to Sabrina on Thursday, she discovered that one of the transplant recipients here has a little sister, who spent the weekend. Anni trailed after her in a manner that L, the sister, found most flattering. We came downstairs for breakfast on Sunday morning and found that L. had made herself a to-do list on the whiteboard in the playroom. It read:
- come downstairs
- play a video game
- have breakfast
- play another video game
- play with Annika
- have lunch
- play with Annika again
- go home for school
Annika had me read that list to her several dozen times, always wiggling with happiness every time I recited "play with Annika."
That day, Sunday, L and Annika played several rounds of 2-player Donkey Kong (the main object of which was for L to find Annika, who was constantly getting lost). Then we all 3 played "Go Fish" for an hour, after which we searched, unsuccessfully, all over the playroom for the missing pieces to the checkers set. After Anni was done with her I.V. infusion for the day, we decided to go together to the Lincoln Park Zoo. The girls cavorted happily in the cold rain, chasing after the sea lions in the underground viewing area and doing their best to communicate with the monkeys. Annika's favorite part, by far, was the mama gorilla and her baby, just born in July. The mama sat right up by the window, looking for all the world like she was showing off her adorable offspring, who clambered over her head, down her back, around her waist and back up again, using her swollen nipples as handholds, earning a little swat from his mama. Annika giggled, the sound muffled by the face mask I made her wear to ward off any ill-timed respiratory infections, since there was a bit of a crowd around the window.
When they finally got too cold from the gray rain spitting down on us, we grabbed some hot chocolate and headed back to the Kohl's House. After dinner the girls and I made a pumpkin pie together. The pumpkin pie (scraped off its crust) was the only traditional Thanksgiving food Annika got this year. However, the pie that Randy from Nacional 27
made for the dinner here at Kohl's was obviously made from fresh pumpkin. He probably also grated his own ginger and milled his own cloves and didn't let a can anywhere near his workstation. His pies disappeared in record time, though, and so I told the disappointed Anni that we would make our own pie.
The girls had a great time glopping all the stuff into the bowl together and getting sticky from the eggs. But when it was finally time to eat it, Anni took one bite and pulled a disgusted face. "This isn't like the pumpkin pie from the restaurant!" Of course. The girl who finds Trix yogurt the most delectable of delicacies has suddenly developed an epicurean palate.
Nevertheless, as I tucked Annika into bed that night she told me, "That was fun!"
"What was fun?" I asked her.
"Everything! The whole day!" she grinned.
On Monday we began talking about going in for surgery. She had lots of questions for me, and I know she is a little scared. I told her that she will probably have some new I.V.s, since they will need a lot for the surgery. She's OK with that, as long as they put them in when she is asleep, but she is adamant that she does not want one in her neck, which is usually where they put the central line, which they will surely need. So I hope that they will be able to remove that one before she comes fully off sedation, or there is going to be one pissed off little girl in the PICU.
She has invented an imaginary friend, named Esmerelda, who she tells me is also going in for surgery on Wednesday. "She's going to be going in with me, and she doesn't want an I.V. in her neck, either, 'kay?"
We took another trip to the zoo on Monday, as the weather was lovely. The place was nearly deserted, and Annika got to visit the baby gorilla again, this time without the mask. We walked home with Annika in the fancy-dancy stroller that the Kohl's house staff let us borrow. It's that kind of Gwyneth Paltrow stroller, with the big, fat rubber wheels and a system of shocks that's probably better than the one on our Ford. Annika pulled her stocking cap down to cover her face and then settled back to go to sleep as she floated home on her luxury wheels.
That evening as we were finishing dinner, a mom with her baby came into the kitchen. Annika was delighted, especially when she heard that this baby had had a liver transplant, just like her. "Ooooo!" she squealed, "He's just like the baby gorilla!" The mom looked a bit stunned. I'm pretty sure that most moms wouldn't be that overjoyed to have their babies compared so closely to a gorilla, but this baby happens to be on cyclosporin for his immunosuppression, the main side effect of which is wild hair overgrowth. Hair grows all over the head, often down the back, and even on the face, including a unibrow. Add to this that liver disease babies never have the usual baby shape. Instead they have a hugely distended belly and itty-bitty scrawny arms and legs from the malnutrition that results from a diseased liver. I wanted to reassure her that Annika loved
the baby gorilla and surely meant her comment kindly. I wanted to reassure her that Annika had once had the exact same features, and we thought her a most beautiful baby. And that the hair growth usually decreases after a year or so on cyclosporin. And mostly that her child was just plain adorable. For simplicity, we just settled on the last observation, and Annika led the kitchen in a round of glowing praise for the cuteness of the baby, who, after all, is
So, Annika is being readmitted to the hospital at 3 this afternoon to begin the process of prepping her for surgery tomorrow. I wish I weren't so nervous, that I hadn't spent this morning's shower chanting "It will be OK, it will be OK, it will be OK..." quietly to myself while Annika happily played with her Ariel doll in her medical-supply-box-princess-castle just outside the door.
Tomorrow is It, The Big Day. Let's hope it works. Deep breath.