In case you missed this plot point, it’s the most wonderful time of the year! Christmas, that most revered of holidays, is upon us. It’s time for eggnog (yuck) and Yuletide (what’s that?) and lights (multicolored? or white?) and decorations (illuminated fawn, no blow-up Santa), trees (wow, that’s big) and exuberant children. And presents. Lots and lots of presents.
I’ve had Christmas envy my whole life. Growing up, I wanted to be Catholic: There was the beautiful stained glass, there was good music—in Latin!—and there was CCD, that mysterious after-school activity that took out many of my friends every Wednesday. My mom barred me from midnight mass until my senior year of high school, for fear I would convert.
Alas, no such transformation would occur, and many years later, I remain the lame Jew I always was. But through marriage, almost-divorce and now in my new life with child, almost-husband and almost-stepchild, Christmas is alive and well, and living in my house.
To be fair, we celebrate Hanukkah, too. But it’s not the same thing. Growing up, Hanukkah was a holiday to light candles, say a quick Hebrew prayer (poorly), get a nice gift the first night, skip a few nights because you forgot, and get some socks the rest of the nights. It was fun; it was festive. But it was not Christmas. We’ve kicked it up a notch now, and the kids love lighting the menorah. But it’s still not all that big a holiday, and I’m told it never was intended to be.
So now I get to join in all the fun of the big one. And mostly, I dig it. But sometimes I do feel guilty, like an Xmas impostor (see, right there: B, the almost-husband, informed me a few Xmases ago that you really don’t use ‘Xmas’ in cards. And you DEFINITELY don’t say ‘Xmas’. That’s only for labeling boxes. OK.)
When we do our annual pilgrimage to the farm for the Christmas tree, each year I try for the little one in the corner, as if a smaller tree would make it OK, would keep my beloved, deceased Grandpa Ilo from hitting me with a disgusted “Aaaaaach!” from on high. It never works. Real Christmas celebrators always, always want a big, healthy-looking tree on which to hang the tinsel and lights and myriad, often breakable decorations. So every year I am outvoted.
Then there’s Santa. No one told me the rules about Santa, so I kind of winged it. Now I have a personal relationship with the big guy—when E has had issues or questions, I can summon him at will, and I get answers no one else can hear, even this time of year, when he’s super busy. You wouldn’t think an impostor like me would have this kind of access, but maybe that’s just another Christmas miracle.
So tonight we will make cookies and leave them out with a glass of warm milk (I tried to point out to E that the milk won’t stay warm by the time S gets here. She looked at me dumbfounded, like I had five heads. See, I really don’t know what I’m doing here.)
And tomorrow morning, the kids will wake up way too early, see the presents Santa brought, and wake us up, excited beyond measure. And for what will take one-quarter of the time the wrapping did, they will open their presents with unbridled joy.
Tomorrow morning, they won’t be two kids grappling with chronic disease (E) or being on the autism spectrum (K). They’ll just be two happy, happy kids. And tomorrow morning, we’ll be the parents of two happy, alive children, though our minds will undoubtedly slip to those whose Christmases will be altogether different. And we will know how lucky we are.
Merry Christmas to all.
Today is one of those anniversaries you never forget. On December 5, 2009, one month after my 40th birthday, my daughter E was diagnosed with ITP.
To say our lives have not since been the same would not be overstatement. Still not “recovered,” E is so much better than she was when the ER doctor at Vassar Bros. confirmed his “worst-case scenario” diagnosis, her platelet count at an alarmingly low 3,000 (normal is 150,000 to 400,000) and we were rushed via ambulance down to Westchester Medical that snowy evening to receive her first of many emergency infusions.
We’re in a far better place now. E, now nearly nine, for the most part feels and looks fantastic these days. We are optimistic that she will continue to improve and yeah, maybe even beat this thing–or at least live with it on her own terms.
But it’s the anniversary of a very important day in our lives, and so I must reflect. It’s what I do. Writers write. I write about her illness in part for me–yes, it’s supremely cathartic–but also as a way to get some honest thought out there about what it would be like to go through something like this. As I’ve mentioned before, I do not offer advice. I offer candor, a look inside this world. I hope in writing about our struggles, our story is empathetic–to anyone who has or will have to go through anything similar. That is my intent. Sometimes when you put your innermost thoughts out there, it can ameliorate the shame or embarrassment and enable others to express what’s inside them, or at least find peace. I offer these thoughts to anyone who wonders what it would be like if one day, you woke up and suddenly your child was sick. Very sick. Hopefully that day will never, ever happen to you–but if it does, I know you’ll get through it. So I write to offer hope, too. Hope is a beautiful thing–like love, I’ve learned first-hand that we can’t really live without it.
Life-changing events like this, for me, are experienced through three lenses: snapshots (the imagery of vivid moments), time (sometimes slow motion, sometimes fast forwarded, sometimes out of sequence, a la “Pulp Fiction.” Often not linear, because hey, that’s just how I roll) and deep breaths–the moments you step back, close your eyes and try to absorb the salient lessons all of this reality should be offering you.
At two years in, here are some of the visual memories I have of our first few weeks:
1) This day two years ago. E woke up with blood on her pillow. That happened the night before, but not as much of it, and I chalked it up to the dry heat. (We had just started running the heat in the house full force, which had resulted in prior bloody noses. Though not like this.) On this Saturday morning, however, with a flash of horror I noticed unusual tiny pink dots covering both of her shins, along with a series of bruises. I brought B, my now-fiance, over to look at her legs: “What’s that?” I asked him. (He’s very knowledgeable about most things and it takes a lot to freak him out.) He didn’t know, but agreed it was strange and she needed to go to the doctor. The rest of the day was a blur of increasingly horrific details–the karate testing where my little dynamo could barely manage a front kick; the weekend after-hours clinic where the doctor had no idea what she had, but told us to get a blood test at the nearest hospital; the drive to the local ER through the first snowfall of the season, the longest 15 minutes of my life; the four nurses it took to hold E down to take her blood, the horror of her shrieking; the confirmed diagnosis; the hour-long ambulance ride down to Westchester Medical’s Maria Fareri Children’s Hospital, just E and me, the way it would be for so many of our hospital trips; the two days it took to get her levels back up, only to drop again a week later.
2) My solo train ride home. Not prepared for an overnight hospital stay, and needing to get back to take care of the dog and get showered/changed, etc., the next morning my ex took a turn for a few hours as I returned home by train to get a quick break and drive back with the car for my second overnight stay. (His stays at the hospital were far, far fewer than mine, which was partly my choice and partly his desire not to be there. Enough said.) On the platform in Tarrytown, more than 24 hours before my first wave of fear that something was wrong with my daughter, for the first time I allowed myself to cry. Not sob. Cry. Primal, from the gut, unrelenting waves of sorrow. Finally by myself, not needing to be the strong one for E, I let it out–the whole ride back.
3) Eight days later, our return trip back to the hospital. Having now read up on ITP, my hope was that this would go away as quickly as it had come, as it did with many children E’s age. But less than 10 days later, her levels had dropped precipitously and we were back at Westchester for another overnight stay. Little did I know that this would be our pattern for the next six months. The doctor sat me down, informed me that he wanted a bone marrow test, “To rule out anything more serious.” “You mean, you’re checking for leukemia, right?” I asked. “That’s right,” he said. The next morning, she was wheeled down for the test. I was with her, watched as they finally were able to calm her enough to put her out. The nurse–a pretty Russian of about 29–made the mistake of telling her they were going to give her something to put her into a “nice sleep.” E didn’t like that idea at all, made me promise they wouldn’t. When she was finally calmed down and the medicine was administered, I watched her stop mid-sentence, her eyes rolling back. Then I was quickly ushered out of the room to wait. “It won’t be long,” the doctor said–“15 minutes.” Nearly an hour went by–not a process guy, this doctor didn’t get me the buzzer so they couldn’t find me, even though I remained in the waiting room the whole time–and finally I was called in to the recovery room. “It’s ITP, no sign of anything else” the doctor said as he breezed by us. When E awakened, she was mad at me for not keeping my promise and allowing them to put her out.
These are just some of the early scenes we’ve shared these past two years. And while I don’t know what’s coming next, I’ve gone from “not jinxing it” to upholding a decidedly hopeful outlook. She is doing great. And no matter how difficult it’s been, we’ve been together on her road back to good health, determined to find our way back to the lives we once had.
Today, I am grateful. My heart swells with joy as I watch her on the ice skating rink Monday nights–something she never could have done two years ago. Though we can’t say this is fully behind us, where we are is a wonderful place to be. It’s great to appreciate what you have, a lesson I only fully learned from this experience.
“Even more important than the warmth and affection we receive, is the warmth and affection we give. It is by giving warmth and affection, by having a genuine sense of concern for others, in other words through compassion, that we gain the conditions for genuine happiness. More important than being loved, therefore, is to love.”–Dalai Lama