Kinsey has started first grade, and it's been textbook perfect—from the little denim jumper and leather shoes (sale priced $24 combined) she wore on the first day to her newfound ability to rise early happily (she has a never-before-used Pooh alarm clock and uses an American Girl check-off list to ensure she's ready for school on time and in an efficient manner — yes, she is my daughter). She loves her teacher, Mrs. Froiland. She seems to like several of the kids in her class. (She only dislikes one kid and she says EVERYONE dislikes him). She has had to deal with many, many versions of the "Are you a girl or a boy?" question, but she seems to be dealing with it well.
Audrey and I still vacillate between telling her to respond with a simple "girl," answer and move on to telling her to say, "Uh—are you BLIND or just stupid?" No, no—make that "Are you visually impaired or just mentally challenged?" She's worn jumpers, skirts or skorts every day so far—all with SOME pink or flower motif. But, as they say, "These days you can never tell." If that's true, why assume so quickly despite obvious hints to the contrary. I mean, let's be honest here. There might be a few boys who want to wear dresses to first grade. And—let's stretch and say there might be a few moms who'd let them. But what BOY who wants to wear dresses to school would have a buzzed hair cut??? Wouldn't he be more likely to have curls? I don't know. Personally, I've gotten so tired of explaining her haircut (and mine—although, to date, NO ONE has thought I was a boy for the record) that I simply say, "It's a LONG story, but in a word—chemotherapy." While that doesn't get at the direct reality, it gets the point across in a non-exhausting way. Since it was the preparation for chemotherapy that caused us to get our haircuts.
The hair is growing, though. And for me it's like a scar from a wound that is slowly healing. And unlike the wounds beneath where it grows—it's visible and a visible reminder of where we've been, where we almost ventured, and even of the unknown ahead. For Kinsey I think it's just an annoyance strictly due to the gender confusion it causes. I don't know for sure. Of course, she has LOTS of real scars and so many bruises to heal and remind and frighten.
Although, she doesn't seem frightened really. She doesn't seem shell-shocked or different in any significant way. Other than the hair and the small pill she takes daily (not unlike tens of thousands of other "well" kids in this country), there are the bruises but overall she seems to act like a typical first grader. She doesn't eat the fruit in her lunch box but crumbs are all that remains of the cookies.
She got lost on her first day due to a misunderstanding about where she was to meet her friends (and mom). Her friend Rachel from next door said, "Meet us outside Ms. Campion's class" (great idea since it's the class right between their rooms, but Kinsey didn't realize until later that she had no idea where Ms. Campion's room was. I waited dutifully outside the front door (trying to avoid totally embarrassing her by coming into the school and into her room. But when I realized she'd left and I couldn't find her in the front or back of the building—I panicked a little. Rachel's mom was fussing at Rachel (a SECOND grader) for not looking after Kinsey better and we were all yelling and searching. A teacher on the playground said, "Is that who you're looking for?" pointing up the hill toward our house. We said it was and she told us Kinsey had come to her and explained that she was unable to find her friends or mom but that she just lived across the street. The teacher had sent two "reliable" older students to walk her across the street. I began yelling, "Kinsey, Kinsey . . ." but she couldn't hear me. I ran all the way home and grabbed her, almost in tears. She said, "It's all right mom." I had cried that morning all the way home from walking her to school. I just had to resist a STRONG urge to grab her teacher by the shoulders and say, "She doesn't know all the rules and routines like all the other kids. She didn't get to come here for kindergarten except for a handful of days and then she hated not understanding the rules and routines everyone assumed she knew. PLEASE help her and take care of her." Instead, I just asked (for her) where to put her lunch box and backpack and then left to cry my way home.
The night before, I helped her complete her first homework assignment (sent in the mail), a poster board about what she was an expert at. She came up with six things (not one of which was modesty) and we helped her narrow it down to four, hoping Mrs. Froiland was more a "spirit of the law" than "letter of the law" teacher. The four things were: Reading, Travel, Drama, and the Dragon. Well—we collected some magazine cut-outs and selected photos which I'd scanned already. We even took a few new ones. I took one photo of her on a large playground map at the school and we used it to show all the states she'd been to (32 so far plus Mexico). I showed her how to create little boxes on the states with a color-coded key. This was not an easy thing but she got good at it by state 28 or so. She cut and cut and cut with her new little scissors. She selected fonts and typed in the words for banners. She arranged the pictures and sent me back to shrink some so they'd fit.
Then it was —oh my gosh— past her new bedtime. I told her to glue on the first one and I'd finish gluing the rest as sleep was probably more important for her at this point. Now, those of you who know me are probably laughing already, knowing how perfect I wanted this thing to be. Well—I swear to God the child is JUST LIKE ME. It's not only scary, but it drives me crazy. I asked Audrey, "How can you live with one, let alone TWO, of us?" Needless to say, I found myself at 3 a.m. standing in front of a pitiful little man who wanted to exercise the very small bit of power he has in the world. He was on one side of the Kinko's counter and I on the other. I wanted to get the damn thing laminated for two reasons: 1) we'd worked so hard I didn't want pieces to start falling off on the way to school and 2) I wanted to be able to keep it FOREVER and put it in the acid-free "keepsake" box under her bed.
So, this little man (who was probably 6 feet tall) explains that he can indeed laminate my posterboard but it won't be ready until 4 the next afternoon. Now, I ask you—why would anyone go to Kinko's at 3 a.m. if they didn't need something until 4 the next afternoon? I knew that he could see I was an exhausted, desperate mother on the edge and he was enjoying his power over me. I tried to calmly explain that I needed it sooner. He rubbed his chin, gave a big sigh, and in a tone that said, "Okay lady I'm gonna help you out here" said, "I can have it for you by 10 a.m." I stood there calmly weighing the merits of leaping over the counter and clawing at his narrowed eyes (his is serious work you know) and pulling out every hair I could get my hands on OR trying to reason with him once again. Perhaps—I thought—he doesn't understand what I'm asking. So I tried again—"When I've had other things laminated here I've been able to wait for them. I was thinking it would only take about 10 minutes."
"Oh probably less than that," he explained, "But there are customers ahead of you and we MUST take the orders on a first come first serve basis." (Did I mention that I was the only customer IN the store? Did I mention that there was another staff member there—who didn't look all that busy? Did I mention that he had an unfinished bowl of chicken noodle soup on a work station amid some stacks of paper? I didn't—well . . .).
Okay, I thought, THIS is why educated, hard-working, honest, decent people should NOT own guns. The temptation to use them at such moments would prove far too irresistible. "Do you know of any other place in town I might be able to get this laminated BEFORE 7:30 a.m.?" I didn't even bother asking why he'd been willing to spend 15 minutes explaining why he was far too busy with far more important matters to take care of my wimpy little 5 minute job. He sighed again and suggested the other Kinko's about 6 miles down the road. "They probably can't do it any sooner," he warned. By this point, taking up more of his precious time was more important to me than sleep. "Could you call them please and ask," I smiled. "Sure," he said, seemingly oblivious to the fact that his call would take longer than laminating the poster.
He called, and they said they could. I smiled and thanked him and drove the 6 miles to the other Kinko's. I walked in, where I was warmly greeted. The young man behind the counter took my little labor-of-love poster board and disappeared. I looked at my watch, just stood there eyes fixed on my watch. I swear to God—one minute and 46 seconds later he reappeared WITH my poster board laminated. He then graciously listened as I poured out the story of how my little girl was starting first grade in a few hours and just a few short months ago we didn't know if she'd still be alive. I showed him the pictures on the poster board. He asked questions, expressed his best wishes, even offered prayers for our continued good fortune. I paid him the small and reasonable fee and left the store, telling him I'd forever drive the extra 6 miles to come to HIS Kinko's and never again step foot into the one near my home.
I stepped out the door, and then I began to cry. All the way home—10 miles—I cried. I cried tears of joy that my little girl was going to be able to start school. I cried tears of joy that she was alive. I cried tears of joy that Teagan and Jillian were healthy, and Audrey and me. I cried because this new beginning marks many ends (some being the ones all mothers cry about when their little girls and boys start to school and others those mothers' nightmares wouldn't touch). I cried about the uncertainty of the future and the immense fear of what could return or come anew. I cried for Ann and baby Gen and the fact that she'd never cry over her daughter's first day of school. I cried for Kinsey's little friend Kailee in Albuquerque who struggles still with aplastic anemia and has yet to find a donor or successful treatment. I cried for all the mothers and fathers who were at that moment sleeping on green foam beds near their sick children in that place I love and hate: Children's Hospital. I had more to cry about but it was only 10 miles and I was in my garage by then.
I placed the poster board on the kitchen table and started to do some laundry. At 4:20 I stepped out of the shower and heard a soft (unusual for her), "Mommy." Kinsey said she was thirsty and a little nervous—but excited, too. She asked if her homework was done. I said it was and she wanted to see. So we crept downstairs together, took a peek, and got her drink of water. "Wow! It's perfect Mommy. You even got it LAMINATED! You are such a cool mom" Now, no child will ever tell that pitiful excuse for a human being at Kinko's #1 that he's a cool parent. Won't happen.
I tucked her back into bed and assured her her alarm was on as was ours. She wouldn't miss it and it was safe to go back to sleep. The next thing I remember the alarms were going off.
So there you have it—day one of first grade (minus the 8:25 a.m. to 3:25 p.m. part). I have no idea what happened during that time.
Jillian, too, has started school!!! Thanks to our wonderful neighbor Maureen, Jillian was asked to participate in the elementary school's early childhood program. It is for children with developmental or physical challenges and an equal number of "peer" children. Jillian and Becky (her friend next door) along with LaKota (who has a vision impairment) are the only three girls in the small class. The teacher was willing to take an extra child because they lacked girls and the numbers were small. After getting past their independent but same suggestions of "just getting LaKota some glasses," Becky and Jillian are doing great in their peer roles—although as far as they are concerned they're just having fun and learning and eating snacks with all the other kids.
Teagan—who has turned 6 months, has two teeth, and weighs about 18 lbs—is loving the few hours of peace and quiet she gets each day, as is Audrey. I am easing back into work (part time until October 1).
So—if life looks so normal on the outside (minus the two short haircuts), so text-book perfect—why doesn't it feel that way?
Well, for one thing—Kinsey's lab reports on Friday were disappointing. While her white count is up to 2.7 (still well below normal but up), her red count and platelets were down a little—so little that you could almost say "unchanged" but down nonetheless. And while the slightly lower red count is still within normal range, her platelets remain dangerously low. Her many bruises and skinned knee provide evidence of her participation in play during recess and cause her moms to fuss at her daily and grill her "Where did THIS bruise come from?"
Dr. Margolis "isn't worried," Audrey reports. At least that's what Nurse Lynnette reported to Audrey. "What does that mean?" I want to know. (I'm driving home from work). Audrey says it just means what it says—he's not worried. I'm not satisfied with this of course. "Is he not worried because he remains confident her numbers will EVENTUALLY reach normal?" OR "Is he not worried because she has Teagan and he still thinks a transplant will work if needed?" OR "Is he not worried YET, but perhaps discouraged?" OR...
"I don't know Karen. Lynnette just said he wasn't worried." Well my motto has always been, "If Dr. Margolis is worried, I'm worried. If Dr. Margolis isn't worried I'm not worried." BUT—since I'm not sure what KIND of not worried he is, I don't know how to feel about this most recent news.
Then there's just the day-to-day dealing with life after the dragon (or is that life with a sleeping dragon or life with an exiled dragon or life with a dying/mostly-dead dragon). In any case, Audrey and I liken it to returning from war and trying to reenter civilian life. In this analogy, middle-of-the-night flashbacks and sniper alerts apply.
We had debated long about how to celebrate Kinsey's upcoming 7th birthday (Sept. 16). We vacillated between wanting to—well—go overboard or simply treat it like any other kid's 7th birthday. Okay, okay—Audrey will say I tend to go overboard for every such occasion—but the point remains: should this be more special? The 6th birthday party was pretty pitiful. We were in our new house without a piece of furniture and we invited the only two children we knew who were not IN the hospital: Kailee (who was still here then for treatment of AA) and Emily, the then-11 year old next door we'd just met. To fill out the party a bit, we invited a couple of adults from Kathy's House (one, Ms. Laura, who was herself being treated for an eating disorder, came). We had pizza on tablecloths on the floor. We hung a pinata in an otherwise empty basement. Everyone tried hard. Everyone who came was good and kind, but it was not the most festive of events. Perhaps having spent the day at the clinic and being incredibly ill with a life-threatening disease put a damper on it. Then again, we did gather at Six Flags post transfusion and with Aunt Ann, Aunt Dee Dee, (a pregnant) Aunt Tee Cee and many cousins gave celebrating completion of her 6th year another shot. That one was more upbeat, and the hotel had furniture. She was still so sick though and we all drifted through the motions with the unspoken fear: "Will this be her last birthday?"
While we are far from free of that fear this year, it does feel somewhat different. The outlook is certainly far better. Any gambler would say last year's long shot has come a long way and is a likely contender for that prize of a full life—happy, healthy, whole. But I am reminded of my dad's assertion that no one would bet on a horse with Teagan's odds—of even being born and then of being a match. "But it's not a horse I'm betting on dad," I told him when Teresa was trying to get pregnant.
He began to understand then and today, proudly says, "It's a miracle all right that Kinsey is practically well. It's a miracle and the miracle's name is Karen." While he acknowledges the contributions of others (well, sure the doctor played a role), this proud father wants to give credit to a crazy woman who placed some bets on a few l—o—n—g shots like Milwaukee and baby Teagan. But, see, I've never liked gambling. It leaves too much to chance and there is far too little control in it for me. Even nickel slot machines make me uncomfortable.
So I wasn't surprised last night when I had a full-fledged panic attack. I had been catching up on email and read a long one from a wonderful mother of a little girl named Vanessa. Vanessa died of cancer here two years ago. I blank on her mother's name even now as to me she remains Vanessa's mother. Anyway, she was apologizing to many of us who have taken an interest in "Nessa's Project"—an effort to provide some support and outreach to other children and parents who belong to the other Club Med: CHW. She explained first that she wanted to provide her other two children with a good summer since they hadn't had one in 4 years (2 years of Vanessa's illness and treatments, the last summer of her life when they tried to pack everything knowing the end was coming, and then the first summer after her death filled with grief). She also acknowledged some continued difficulty in dealing with Vanessa's death and with continuing the project. While still committed to it, she explained that going into the hospital was still hard and was often followed by days of tending to reopened wounds. She described a recent call from a mother who'd just lost her daughter. The anguish and despair and anger. And as much as she was able to help and wanted to help, this experience must always force her to relive some of her own pain. She wants to make a difference in Nessa's memory, and she can't simply forget that it happened or the place where so much of it happened or the fact that it continues to happen to other families every day. Yet, it is an emotional struggle and 2 years after her little girl's death her emotional roller coaster continues.
I read her words and felt such a connection, as I almost always do with other parents who are longtime members of Club Med CHW (okay there's no beach but the plastic green foam beds are great and you just can't beat the life-saving statistics or bedside manner). We recently visited CHW to see Brooke (another survivor of aplastic anemia; someone asked me if boys ever get this disease—yes, we just don't know any). Brooke had a transplant and her counts remain great. Her dragon is dead. But she still has some problems from complications of the treatment. Two years ago, she was very, very ill, near death, and suffered a stroke. Just now, she's developed a seizure disorder as a result. But she looks great. None of us recognized her. Her face was a mere shadow of it's former self minus massive doses of steroids. And she had hair! Lots of curly light brown hair! Good news is she was going home in a day or two.
During our brief visit, I felt such a mixture of emotions. There were flash-backs to when we "lived" there, tremendous relief at no longer needing to be in and out of there so regularly, and indescribable fear at the prospect of returning. I, too, want to stay connected, never forget that most every room has a light on most every night. The beeps of the machines, the thump of the hands-free sink turning on and off with a tap of the knee, the smell of bleach and coffee, the warmth of the laundry room, the signs reminding all to wash hands and KEEP DOORS CLOSED, and the sight of toddlers and teens and little boys and girls in between—of all racial and ethnic and backgrounds, poor and not, with excellent loving supportive parents and not. There, they all belong to their own club where none of that matters much. But I cannot tell you about that club any more than I can tell you about the 8:25 to 3:35 part of a first day of school. It is a club to which I will never know what it feels like to belong. Kinsey, and Brooke, and Kailee, and Sage, and Kayla, and Gen, and Katie, and Daniel, and Luke, and Teghan, and Ashley, and Cheri, and Ben, and Steve, and Paul, and so MANY others KNOW what it's like. Yet they cannot explain it to you or me any more than I can explain what our club feels like—the one Audrey and I belong to, with all the other mothers and fathers whose false sense of security, whose invalid belief that they could protect their children and actually CHOOSE what clubs they joined got shattered to bits one day. For some that day was the birth of their child (a day when any parent is hopeful and usually optimistic but somewhat nervous about what could be or go wrong), but for most of us the days, the moments came some time later after when we least expected them. I am told those days/those defining moments create strong, compassionate, insightful, wonderful adults out of the children who endure them and actually survive to reach adulthood. I believe that, even though I worry about the scars (mainly the ones you can't see). As for us in the senior version of the club, I have less hope. We are so damaged. But perhaps the great improvements such adversity will bring to our characters just takes a bit longer to emerge. Or perhaps we just need to stop crying or worrying long enough to see them. I don't know.
But I do know that reading this mother's words last night and remembering my own feelings at the hospital a couple of nights before snapped something in me—a warning. KAREN (it said) you must find a balance, a balance between resuming a "normal" life and NOT losing the lessons of the last 18 months. You can't "wallow" in your fears but neither can you pretend you will ever be or feel safe again. You can't go on not working and dedicating yourself full-time to the kids (along with Audrey) but neither can you return to working 50-70 hours a week!
So as for our debate about taking Kinsey to the Wisconsin Dells for her birthday or taking her to the American Girl Place in Chicago, it became a no-brainer.
We had been thinking of taking her to WI Dells for her birthday but American Girl would be a less expensive trip and she LOVES everything American Girl. So we could put off the Dells trip a month, or two. Perhaps we'd go before Christmas or after the first of the year. Rates might be better... We promised Kinsey we'd take her to the Dells more than a year ago "when she got her broviac out." It's out. It's been out awhile. It's possible (though not probable—depending on what KIND of NOT worried Margolis is or isn't) Kinsey won't be able to swim in a month or two or three. I said—with excitement and conviction—to her when she was lying in a hospital bed, "We'll go when you get your broviac out." I had no idea if she'd EVER get it out at that point. It was a cold day, and had the largest waterpark in the world been in Alaska or on Palau—I would have made that promise. So I thought, last night, hell—it's going to cost some money but think how lucky we are that it's only an hour and a half away. Now Audrey will tell you it is precisely that kind of thinking that gets me into trouble (we call it the "for 10 more dollars I could be on the beach" syndrome), but you have to admit there's logic there—somewhere. So we are going next week and NOT for her birthday. We're not even having another dragon slayer party. We're not necessarily celebrating our newfound freedoms or back to school or back to work or Rosh Hashana or the second Friday of the ninth month of the year 2003. Nor do we care that it is the day after the anniversary of Sept. 11. We are going merely because we can, because her broviac is out. It's that simple and should we stay one or two nights? "Two," I said, "because we can't afford even one so since we are ignoring that fact, why not go all out?" (Note: there's that twisted thinking that Audrey hates again). On the other hand: why not stay a week? Just kidding. Gotta save for the Kinsey IS WELL party at Disney World).
Jillian was glad to hear this little family mini-vacation was just as much about her, too—and the fact that she is free of a broviac and therefore able to swim and splash and play. In fact, we may need to have a "This has NOTHING whatsoever to do with the dragon" party soon (with pizza here at home).
That leaves the matter of Kinsey's birthday. Since she needs no more toys or stuffed animals or games and is even doing okay in the clothes department (thank you Aunt Ann and Maureen), we're taking her to the American Girl Place in Chicago—where she will be "treated like a little princess." She'll meet the author of many of the AG books she loves, Valerie Tripp, and then get to tour the exhibits of the girls of many lands as well as the life-size exhibits of the various American girls she's read about, then she can do a little shopping; a few family member's who've asked about what to get her are going to give AG gift certificates, so she should be able to get some of the other books she really wants as well as a diary, theatre kit, or even some doll accessories to go with the AG doll Aunt Ann is providing.
She knows nothing of this surprise trip, but squeals with delight daily about W-I-D-E-L-L-S. (Wisconsin Dells). It's so exciting, she can't just say it. "I can't wait!!!!!!"
I forgot to mention that the Friday following her actual birthday she wants to have a sleep-over party (with about 6 of her newest and closest friends, along with a couple of her oldest and "bestest" friends). For a child who has always been more comfortable around adults than children, we are thrilled she has friends.
One bit of news today-I got a call from the school letting us know her teacher had referred her to the gifted and talented program for assessment. The lady told me some of Kinsey's characteristics (such as preferring the company of adults) were typical of gifted children. She seems so happy and comfortable in the first grade, we've quit talking about any shift into second. We just want her to be happy and challenged, and most of all HEALTHY.
She's in a combined class of first and second graders and seems to just love every minute of it. She has a homework assignment to read at least 20 minutes a day. Well-she has it in her mind that she will read at least three times that amount. There are, after all, she told me, "so many, many books I haven't read." To that end, she read for 100 minutes last night. Her best friend Rachel told me that she'd read her 20 minutes worth last night and she said, "I bet Kinsey read 100 minutes." I asked how she knew that. Had Kinsey told her? "No," she said, "I just figured knowing Kinsey and how she LOVES reading that she probably read about 100 minutes." Like most of Kinsey's friends, Rachel I think better understands Jillian's goal: to have the most shoes of anyone at school (we call her little Emelda). Kinsey would walk out the door wearing mismatched sweatpants and t-shirts everyday if I didn't oversee the process. (Since she is like her mama that way, I put out her clothes at night.)
Speaking of friends, Kinsey has a wonderful new friend named Ashley. She's a penpal who got paired with Kinsey through the Give Kids the World organization in Orlando. Ashley has CF and is the same age. The love writing and emailing back and forth.
One bit of news regarding the financial front of this battle. We have gotten the medical bills and other aplastic anemia related expenses down to approximately $35,000. The total direct medical expenses last year exceeded our total income so the picture this year is greatly improved. And we cannot thank enough those wonderful friends who have helped so much in this arena. A wonderful woman named Carol Kay got together a bake sale at a local bank and raised more than $900 last month! Our dear friends Fran and Kitsie (Red Cross volunteers ARE the greatest!) sent checks in celebration. The doctor who delivered Kinsey and his wife even sent a very unexpected check recently, too. AND-the Waukesha Walmart has agreed to let us come and set up a lemonade stand two Sundays this month: the 21st and 28th. The last lemonade stand raised more than $500 and we were only set up for a few hours! All of Kinsey's little friends were great PR folks. The pitch for donations (lemonade is free) has changed. Audrey said, "What can we say since there's no transplant?" I said, "That she is recovering from aplastic anemia and we are recovering from 18 months of expenses that got her to this wonderful point." The reason we are doing two dates is to raise funds first for medical and related expenses and second for the Kinsey Is Well party at Disney World (this time she'll be able to ride EVERYTHING and not wait to be unhooked from IV meds in the morning and NOT need 3 transfusions before we leave). We're still hoping for Feb. '04 but I guess that depends a bit on Margolis and how NOT worried he is. For all of you who've helped us along this road, we remain forever grateful. From the yard sale and car wash fund raisers to the outright gifts of thousands-we thank you again and again and again.
One bit of news regarding the media coverage of Kinsey's story. There have been, as most of you know, articles in the Milwaukee Journal Sentinel, The Louisville Courier Journal, and the Albuquerque Journal recently. There was lots of local TV news coverage of the "miracle." And the local blood center and Make-A-Wish folks continue to use Kinsey as a spokesperson. We still do not know about the People Magazine article or John Walsh follow-up appearance.
In a rare recent quiet moment, Kinsey asked me if I ever really thought she was going to die. I said, "No, but I was still very, very afraid that I might be wrong about that." She said, "Me, too. I mean I never really thought I would die, but I was afraid of dying anyway."
"Are you still afraid?" I asked her. "Sometimes," she said, "but not really." Are you Mommy? "I'm not really worried about that anymore," I lied. Thank God she didn't ask me what kind of NOT worried.
Karen
P.S. Kinsey was called back
to audition for a play (her role would be an angel). She sang for a large
group and we are waiting to hear if she makes the final cut. We told her,
honestly, that we were incredibly proud that she tried and it would be
fine this year if she did nothing more than the two auditions. Audrey
has yet to get the Jeopardy call, but it's coming.
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