Kinsey
started school this week- hospital school, one hour a day, one-on-one
with a teacher. The doctor actually gave us the option in the 11th hour
to send her to "real" school, although he advised against it.
He warned us of the risks and how much she would need to miss, etc. We
talked to her about it and she said, "If it means I might get sick
again and have to go back to the hospital, let's X it." So she began
school at the Children's Hospital of Wisconsin. I have imagined that day
many times and it never looked this way. I'm not sure what the school
doorway should have looked like, but I am sure it shouldn't have been
large electronic sliding glass opening into a lobby smelling of popcorn
and filled with tiny wheelchairs. She loves it, however. Really loves
it. The teacher did an assessment on the first day and asked her, "Can
you spell any words?" Kinsey said, "I can spell GENEROUS."
"Generous?" questioned Ms. Char. "Yes, G-E-N-E-R-O-U-S."
Char told me she almost fell out of her chair. "Can you spell CAT?"
"Oh, sure! C-A-T." She recommended we skip kindergarten and
go right to first grade. We have not done the official paperwork and are
not sure we want to yet, but Ms. Char has proceeded to first and second
grade curriculum. Kinsey asks me, "What is 437 + 49?" I say,
"Let me get the calculator or at least some paper." By the time
I do, she has usually come up with the answer on her own.
I still remember Kinsey's first day of pre-school at All Angels. She wore
a little denim jumper and new shoes. She had a new haircut and looked
nervous but excited in the pictures I snapped outside before taking her
in. Audrey dressed her before I had a chance to say, "Let's let her
wear a dress." So she didn't wear anything special, but I did ask
Audrey to take a picture anyway outside the hospital. I think now I should
have picked out something more special and fixed her hair. We did take
her shopping to get a new book bag, pencils, scissors, crayons, primary
writing pad, and glue. She had most of those things already, but... Her
book bag has wheels-, which she needs for all the books she brings back
and forth. She decides how much homework she does each day, and she's
not easy on herself. It weighs about 10 lbs.
I told her tonight I'm not ready for her to turn 6 yet. Time is moving too fast, so we are simply going to skip her birthday. Audrey suggested we have Sept. 15, then Sept. 15 again, then Sept. 17. We agreed. But Kinsey protested, laughing. "Hey," she said, "I had to live through your 40th birthday and that was hard for me." "It was?" I asked her. "Well, sure. It's not every day your mommy turns 40 you know." "Okay, okay. But you must take a little longer to turn 7." "Oh Mommy, you're so silly. I'm just growing up. Get used to it." I was washing her long dark hair at the time and thinking about how tall she is getting, thinner too, stretching out as little girls do. So my baby started school this week and turns 6 next week. I am busy planning the best party I can imagine- another trip to Six Flags with some little cousins joining us. She will get another double transfusion of platelets on Friday to be able to ride anything she wants on Saturday.
Her red cells, which have been slowly going down, have slowly started the other direction: 5.3, 5.6, 5.8. Her last CAT Scan was clear and the doctor took her off the big "rocket science" (as Audrey calls it) IV medicine. He also took her off the 15 hours of hydration each day, but today she went back on that because her kidneys were failing again. It's hard to get a kid to drink 50 ounces a day, let alone more than that. The compromise is we will do it only 12 hours a day, most of those while she sleeps. So it just means getting up every couple of hours again for potty trips. Overall- she continues to SLOWLY get better.
We watch all the children around us whom we've gotten to know well. Some are thriving. Some are likely not going to make it. We exchange updates outside the school room or in the clinic waiting room. "Daniel got septic shock and had to go into ICU last week," Brooke's mom told me today, "but he's doing better now." Steve, Kevin's dad, told Audrey, "The doctors said he probably wouldn't make it through the night last night, but he did." I looked at a little girl in a wheelchair with lots of tubes, etc. the other day- really looked at her. Her mom was looking at me, surprised that I had the nerve to look so hard as I am sure she is used to people looking away. I looked at her and smiled and said, "She looks like you." Her face lit up, really lit up. I saw something, noticed something few probably do, something normal.
We are beginning to feel more normal, settle into a new normal routine, accept certain before-unthinkable things as just normal. I told Linda, Kailee's mom today, "Let me pick Kailee up and take her to school. It feels normal to do the kid carpool thing." I shared with Ms. Char that I told Kinsey the other day, "You can't play on the computer until you've finished your homework." Ms. Char said, "Isn't it nice to say something normal like that to her?" It is.
We are living in our new home and even though we have no furniture to speak of and are sleeping on air mattresses for the moment, it feels so wonderful and so much more normal and real. I am fixing up a play area for the girls downstairs. We have not eaten out once since we've been here. I am cooking some (those of you who know me don't faint). Last night Audrey worked and it was my first real duty as the stay-at-home mom. I took the girls to the grocery. They both wanted to push little "shopper in training" carts. Of course, they pushed them into me, into each other, into other shoppers, into groceries. Jillian fussed that it was too cold. I was sweating. They wanted everything they saw and didn't want to go down certain aisles. Three carts full: "I have to go potty!!!! REALLY bad." I kept thinking, "Audrey would be laughing her butt off if she could see me now." But I am truly truly grateful for this opportunity to savor every moment with them and enjoy and learn from this experience. I still cannot imagine being able to work a real full-time professional job that requires thought and commitment. I hope by the time I have to do it, things will be going well enough that I can. For now, I will try to live up to my promise to Audrey: "I'll be like Mrs. Doubtfire; just wait and see." I admit, already it's harder than I thought, but any job I've ever done, I've done well. This will just have to not prove to be an exception.
May
you all have a peaceful September 11. I cannot believe it's been a year.
And it's been 5 months and 22 days since OUR September 11. That, too,
is hard to believe, even though remembering life before March 21 gets
harder each day. Take care of yourselves and those you love. Say and do
what you need to today. Every day.
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