All the cliches about time are true. It marches on, it goes by so fast, it waits for no one. We know it, and yet, as parents we can still find ourselves flat-footed and emotionally unprepared when a big milestone arrives.
Today is one for me. E turns 13 today. My girl’s a teenager now, growing up in leaps and bounds and putting it all together, the world and her place in it. I see an amazing young woman emerging, the shadow of little kid fading away.
I’m proud of who she’s becoming. (Can I brag a little? It’s her birthday.) Oh, sure, I could highlight the obvious things — her talents, her intelligence, etc. I’m proud of her accomplishments, as any parent would be. And I’m quick to get weepy (and thus mortify her) at her all-county concert or her big ice skating show. This June, she’ll be doing her first skating solo! Cue the waterworks. And the photos.
But I’m most proud of how she is on the inside, the stuff that makes her “a cupcake in a world of muffins,” as Maddie, one of her favorite camp counselors, described her:
She’s tender-hearted. She’s kind and empathetic, a loyal friend and supportive peer. Last year at her recital, after a boy she’d never met before who was socially awkward and shy played his piano piece, she tapped him on the shoulder and offered an emphatic, “Great job!” She thinks to do those things. (She’s not always this way at home, truth be told. But this is how she is in the world, and it makes me happy to know and witness it.)
She cares . . . a lot . . . about the world. From animals to preventing climate change, E has shown great interest in learning about the world her generation is inheriting and finding ways to make it better. This fall, when considering the option of getting solar for our new home, I asked for her input. I explained we’d need to make a choice, as we couldn’t afford both: Either get the panels now and delay her long-awaited dream vacation to Paris another year (or more), or forego the panels in favor of taking the trip. Without hesitation, she replied, “Get the panels!” (We did.)
She’s fun . . . and so funny. From her infectious, staccato laugh to her funky interpretive dancing to her off-the-cuff quips, her sharp sense of humor continues to grow in unexpected ways. And so far, self-consciousness hasn’t held her back. I hope this continues and her light isn’t dimmed by teen angst.
She’s a fighter. I’ve written about this a lot already, but I am so grateful for how strong and brave she is. Turning 13 marks the age at which she’s spent literally half her life grappling with two serious medical conditions: first, ITP, a rare blood disorder, and now, Crohn’s disease. We’re hopeful she’s conquered the first, with the help of an amazing doctor and the latest treatments. Unfortunately, this victory was immediately followed (shortly after turning nine) with more troublesome news, that there was an incurable underlying condition entering center stage. Her tenacity and pluck have been pushed to the limits, but they’ve never wavered. I wish it never happened; that she never would have had to call on these strengths to get through dozens of hospital trips, visits to the ER, invasive procedures, pain, medications, steeling herself for test results, and having to comply with the poking and prodding of a host of doctors and nurses. But we’ve learned that while attitude isn’t the whole battle, it is a huge part of it; that you do still have a choice—you can succumb to despair, or you can try to get past it. She’s a silver linings kind of girl. She has fought hard to live fully, and not allow her physical issues to define her. And they don’t! She’s done that for herself. That’s all her.
My girl is fierce, in the best possible way. She challenges me to be my best self for her, and it hasn’t always been easy. But it’s always been worth it. So happy birthday to my cupcake, my teenager! You make me proud, every day. And I love you more than you could imagine.
Eleven years ago today, she came into my life and it’s never been the same.
E, you’ve taught me so much. I am so grateful for you, every day. Your courage, humor, warmth and indomitable spirit inspire me to be better. You fight so hard to live your life fully, as if nothing ever happened to you–no parents divorcing, no chronic illnesses, no pain to contend with. And you succeed! So brilliantly.
Look at you. A young lady now. You’re everything I hoped for and more in a daughter: kind, effervescent, smart, clever. Beautiful inside and out. And so funny. You make everyone laugh. You have many talents, but you’re not boastful about any of them, because you don’t see yourself as better than anyone else. Many years ago, I told you the lesson about how to have a friend, you have to be a friend. You got it immediately. You are such a loyal, loving friend. It makes me proud to hear you with your friends, how encouraging you are. How you listen to them. You care so much about the world and you want to make it better with your whole self. I love what you said recently to me: “Mom, when I grow up, I want to make a million dollars, so I can turn the whole town solar.” You care deeply about the earth and animals and what’s going to happen to all of us. I love that so much about you. And your sense of fairness–you never want to be treated any differently, no special favors, despite all you’ve gone through.
And most of all, I love that you’re such a fighter. Nothing will stop you from living a full life, because you’re so, so strong. My brave girl. You make me want to be stronger, to be what I need to be for you. I love you, my tenacious Miss E. Happy birthday.
Early January is a notoriously depressing time of year. There’s the post-holiday mood dip; the lack of warmth and sunlight; and the get-back-to-work frenzy, none of which spell joy for many of us. I, for one, hate winter. Always have. This time of year, I have to remind myself I live in a Northern town for the other three seasons, all of which can be spectacular. I don’t partake in many winter sports, except occasionally ice skating, mostly because of my iceberg feet. They won’t fully warm up until June, which I am eagerly anticipating.
In my mind’s endless dance between realist and optimist, I take solace in the fact that the days are getting longer, that in a little more than two months’ time, the first signs of spring will emerge. I try to get outdoors and take nice walks with my dog, Nadine, when it’s not too frigid out. She has always preferred this time of year; with her furry, black coat, she bakes in the summer sun. My “Winter 2014” Spotify list alternates between sad and upbeat tunes; the sad to immerse in the winter vibe, the joyful to snap me out of it. These tricks work only so well to keep the melancholy at bay, but they’re better than sticking my head under the flannel sheets until someone wakes me up to tell me I made it, it’s April. (Not that I could do that, anyway. But sometimes I’d like to.)
Always this time of year we think about the year that was. For many of us, 2013 was a hard one. For me, too. I lost an old friend, quite suddenly, in June. He was 45. Aside from the grief of this loss and feeling for his family and closest friends, it was yet another reminder that none of us has a guaranteed shelf life. His mass card sits by my computer now; his spirit—loyal, funny, always cheering his friends on—a reminder to believe in myself, because that’s what he would say to me right now, if he could.
Work progressed on my impending divorce—now nearly six years in the making. Lawyer 2.0 got things moving and convinced the judge to rule in my favor. It took three hand-wringing court dates to get there, and too much paperwork, but I got what I wanted: custody and child support. But it is still not final, we still need final judicial review/approval. I’m told that will happen by the end of January.
E’s pain reemerged, and her second colonoscopy revealed the continuing presence of widespread inflammation. A major change in treatment was needed, and we were able to take action immediately without changing any of her summer plans. This worked, but only until September, when the pain returned with a vengeance, just in time for the start of school. She lost nine pounds and missed the whole first week, only to return anxious that she would not catch up. (Of course, she did. Kudos to E and to her teacher, who was able to calm E’s nerves and get her into the mix immediately.) To stem the tide, a 20-day, low-dose course of the dreaded Prednisone was added—my last resort. Meanwhile, the doctors rejiggered her treatment plan. By December, E was much improved physically and emotionally. The trial and error of the last few months had paid off.
As I look back to 2013, there was pain. There was frustration. And worry. And sadness. But there was also progress.
I miss my friend, and am sad we didn’t get to see each other these last few years. But I will not forget him, and I’m choosing to use his memory to inspire me to be the best me I can be: empathetic, kind, capable, fun.
I am nearly divorced now. It is a matter of weeks. Now I can focus on my future with B. We hope to be married soon.
E is getting better. There’s a chance that this new course of treatment will keep her in remission for many months, perhaps even years. I toe the line between hopefulness and realism, while continuing to educate myself on what else can be done to keep her healthy. And fundraising for a cure. I dream that within her lifetime, and maybe even in the next decade, Crohn’s disease will be curable. It could happen.
It’s January. A time of year I truly despise. But after a hard year of challenge, change and progress, the fog is lifting. Icy toes, polar vortexes, dirty snow—they’re not bringing me down. I’m looking forward. Maybe all my dreams won’t happen in 2014, but we’re getting closer.
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.
. . . my daughter, E, then age six, was diagnosed with ITP, a rare blood disorder. This photo was taken that night, as she was wheeled from our local ER into an ambulance that would take us to Westchester Medical Hospital, our home away from home for the next seven months. Three years, dozens of hospital visits and overnights, a plethora of medications, and several doctors later, her ITP has stabilized. But before we had a chance to fully celebrate this news, this past spring, an underlying condition, Crohn’s Disease, has emerged as the bigger threat to her return to good health.
Before December 5, 2009, I never understood how people who experienced a life-threatening illness—either having it themselves or being caregiver to an afflicted loved one—would say they were grateful for what it did to them. Now I do.The hope is that when something really bad happens to you, you learn from it, and hopefully evolve into a better form of you. I think we both have.
Here’s what I’ve learned from all of this:
1) Life has lots of good and bad. Life is not about fairness. Or God, for that matter. God didn’t do this to E. Sorry, I just don’t buy it. If there is a God, she doesn’t micromanage. Shit really does just happen.
2) If you get stuck in the “Why?” you can never get to the “What do we do?” That said, it’s important to take the time to grieve and process. But not live there; move on.
3) The Caregiver’s Guilt–why couldn’t I take the hit instead of her?–serves no one. The caregiver’s job is to be strong.
4) You can’t dig yourself out of a hole if you can’t get past the hopelessness. If that’s where you are, get help. As my doctor said to me,”The mind is not equipped to handle this much stress for this long.” And yeah, sometimes that means meds.
5) Caregivers need to do whatever it takes to heal themselves, sans guilt. In my case, it was a few months of happy pills, followed by continued practices like therapy, acupuncture, hiking, deep breathing/yoga, blogging/other venting via social media, and time with family, friends, and B, my partner in love and life.
6) Celebrate the good moments. Nothing like a health crisis to teach you that you can’t take life for granted, and that every pain-free day, every joyful new experience, is a reminder that life is about the now. You get through the bad days so you can have better ones. And then relish them.
7) It’s an honor to be the caregiver. Having someone trust you with their life, their well-being. I wouldn’t want it any other way.
8) Love is everything.
Today is the first day of fall, and I’ve been looking forward to the change of season for a while now. Summer is usually my favorite season: I love all of the opportunities to swim, hike, be outdoors for hours on end and wear dresses without feeling cold. But this summer—I guess the best I can say is we got through it OK. Overall, it was a rough go.
It started off badly and got worse, then somewhat better. By June, my daughter, E, was having acute stomach pains, and despite two rounds of tests that said she was negative for IBD, her inflammation marker was very high. The last two weeks of school were torture. I called the doctor and moved the colonoscopy/endoscopy up a week. E got through the tests like a trooper but the news wasn’t good: Widespread inflammation indicative of Crohn’s disease. She was put on a host of meds; for several weeks, she only marginally improved. After fighting to avoid steroids but seeing little improvement, I relented. It was back to the pred again–a four-week stint, less than she’d had in the past for ITP, but the last thing I wanted. Friends in-the-know told me not to fear it this time. They were right: E started feeling better after a few days, and was virtually symptom-free for the last weeks before school. Our last visit to her GI in early September brought more good news: Nine days after going off steroids, the inflammation dropped to normal levels. All was looking up. We took her off another medication.
But in the past few weeks, the pain has returned. So we’ve added another medication. And completing a new round of tests. And she’ll be having an MRI on Columbus Day. And she may still need to see this world-renowned immunologist to rule out anything worse (as if two chronic autoimmune diseases, one of the blood, the other of the intestines, weren’t enough). I feel like a stranger in a strange land: GI-Ville, where little is known but much is tested. I wish I knew how to get us to a better place, but right now it feels like we’re walking down an unfamiliar road in a place we’ve never been—in darkness.
It’s not all gloom and doom, though. When I step back, I can see we’re holding our own, able to enjoy the good days without globalizing the not-so-good. We’re still having fun. We still laugh a lot. But I’m finding it exceedingly difficult to maintain a state of calm. The worry is incessant, like the ocean tides. Sometimes it’s low, sometimes high–but always there, reminding me that something just isn’t right. My child is sick. Again. And being like this for so long now, I’m starting to question whether I’m able to see things straight anymore. The rawness of it makes me question my ability to get a good read on things; I question how my emotions are skewing the picture. Am I overreacting too much? Am I turning what used to be minor annoyances into small-scale catastrophes? Am I fighting to be right instead of leading with kindness (my mantra to E)? I hate the drama of it all.
I’m hoping the change of season will reveal whatever our new normal is. Maybe then we will enter a new chapter of understanding, acceptance and peace.
With her ITP in remission, this new news is a huge setback to E, who, more than anything, wants to just live her life like a normal nine-year-old, without pausing for things like medications, blood tests, hospital visits, and worrying about whether her stomach will cause undue embarrassment for her at the worst possible moment: in front of her peers at school or camp this summer.
As before with health crisis #1, my parenting m.o. is to return her back to living a full and mostly uninterrupted life as soon as possible—or as soon as her body will allow it. Determined sorts, philosophically we are in accord that she will not be defined by her condition(s). I take her lead on how much (or how little) she wants to talk about it, and with whom, with the caveat that as before, I must tell anyone who is taking care of her (teachers, camp counselors, school principal, school nurse, etc.) what’s happening so we can set up protocols for her care and well-being, and they have a clear sense of what to do if something happens.
Though I’ve never done any time on the trapeze (and probably won’t. I don’t dig heights. Though I did hike Bonticou Crag: http://www.nynjtc.org/hike/bonticou-crag, so I guess anything is possible), parenting a child with a chronic illness seems a lot like what I imagine navigating the high wire would feel like. On the one side, you need to be supportive, empathetic, present. Nothing like a health crisis to remind you about who and what comes first. On the other, there’s the need to keep in place all of the expectations and limits that a high-spirited almost-tween needs. In her less than stellar moments, I often remind her that as her mom, my job is to raise a human being, not a beast. And while she does an admirable job holding it together for others, she can, at times, be a total pill with her close family.
Some of that was directed toward me yesterday afternoon, and I called her on it. After apologizing begrudgingly, E replied, “But I’m angry. I don’t know what to do with that.”
OK. No one likes being dumped on, but I take a step back from our mother-daughter fracas to appreciate her comment. No, I don’t like the behavior. And no, I don’t deserve it. But I am very grateful that my kid is so in touch with her feelings and able to express them. She’s always had a lot to say, and never had a problem saying it, often incisively. I have faith that her ability to identify and articulate her feelings will help her in this second-round fight back to better health.
Over the past few days, we’ve had an ongoing conversation about other things she can do to help her heal herself. She asked me what I do to stay in good health, so we discussed some of my go-to remedies. We talked about going to a doctor who she can talk about her feelings with. “Can we go Saturday?” she asked me. She’s eager. Yoga: Bored of downward dogging at age 5, she now says she’s willing to hit the mat again. We talked about acupuncture. E has witnessed me ‘get needled,’ and vehemently opposed it before. She’s now willing to try it. Like me, when faced with an acute health issue, she is game for the kitchen sink approach . . . don’t just do one thing, do many things. Then figure out what works.
So another chapter begins, the one where we learn through trial and error what works best to get her back in balance. In the meantime, I’ll stay up here on the trapeze and do the best job I can to not fail her. There will be no perfection; I expect to fall, maybe often at first. I am counting on those nets beneath me. But every day I’ll get myself back up there and keep trying. I owe her that.
“Life to you is a bold and dashing responsibility,” E’s fortune cookie, June 23, 2012
Since my last post, E has been symptomatic and often in pain for several weeks. When I called her GI doctor, Dr. S., early last week, they informed me that there was a cancellation; so instead of waiting another 10 days, we were able to move up E’s colonoscopy and endoscopy to last Thursday (the 21st). We mobilized quickly; did the prep (I think childbirth was easier); and showed up early Thursday morning. At this point, I was prepared to hear that she had IBD, but was hoping that it was an “early” case, that only slight to moderate inflammation would be found.
After a quick visit to her hematologist, we learned that her platelet count was well within normal range. All good there.
Then up to the outpatient surgical center. After a seemingly endless wait and several rounds of paperwork, E was finally brought in to the operating room. She counted down from 10, getting to two before the anesthesia did its work and I was ushered out of the room, her beloved Eeyore in hand.
Fellow parents, if there is one sight I hope you never have to witness, it’s seeing your child be put under. The horror and heartbreak of this visual—words cannot adequately describe it. This is my second time doing this, the first being her bone marrow test when she was 6. And despite the fact that she did it willingly this time—cheerfully, even, with a chipper “bye bye!”—it wasn’t any easier.
Deep breath. I regrouped. And then the wait. A little over an hour later, Dr. S came to get us (my mom was with me) and silently brought us back to the recovery room. I could tell from her expression that the news wasn’t good. Over the past few years I’ve learned it’s never really a good thing when the doctor looks troubled.
She told us she saw a thick wall of inflammation covering E’s colon, with inflammation in the upper tract as well. It sounded like she was surprised, too, by the severity of the disease. Signs were pointing to Crohn’s, but we would know more once the biopsy results were in, in about a week.
When E woke up, as promised, her first word was, “cookie.” (She hadn’t had any solids for a day and a half, and, as with all hospital trips, there was her favorite black-and-white cookie purchased from Lenny’s waiting for her.) She was in good cheer and happy to have the big test over with. After I tried to briefly explain that they saw some inflammation, she quipped, “My insides are a bouncy castle!” I let it go, happy she was happy it was all over with.
But in the days that followed, her stomach pain worsened. And on Saturday she could barely move. After speaking with the on-call doctor, we ended up spending a very long night in the local ER, where they did more blood work, gave her IV fluids and a CT scan to make sure there weren’t further developments or complications from the procedures. Luckily, there weren’t. Yesterday, I met with her Dr. S who confirmed that all signs are pointing to Crohn’s: another serious, potentially life-threatening lifelong condition E will have to deal with, just as we’re finally in a good place with the first one (ITP). It wasn’t unexpected, but it stung just the same.
(Note: I could succumb to a Nancy Kerrigan “Why us?” moment, but I don’t really believe in any sort of grand design determining this or any other outcome. So while that thought crosses my mind sometimes, like a pesky fly, I swat it away. I have no place for it.)
So, the news is not good. We have a plan, though, and great doctors who really care about E and getting her better. We have a wonderful support system, family and friends who helped get us through last time and I know will be there again for this. I’m confident we’ll get through this and get to a better place.
But right now . . . the part that’s most difficult right now is that my kid, my plucky, amazing, tough, resilient kid, seems resigned to her fate, which is so heartbreaking. From all I have witnessed as her mother, in everyday moments and as the one at her bedside, I can tell you that she is the bravest person I know. But right now, I’m not seeing the fight in her. Pain, lethargy, the gradual resignation that she once again is a “sick kid” are taking their toll on her, physically and emotionally.
I want my tenacious, vivacious fighter back. I’ll do whatever it takes to get her back. She’s too strong to go down with this blow. And hopefully I am, too.
The incomparable words of Alfred E. Neuman are quoted fast and furiously over our long blended-family weekends. His Pokemon phase gloriously fading, K, my soon-to-be stepson, now can’t get enough of MAD TV. And while I much prefer this obsession to the last one—have you ever tried to watch a Pokemon episode? There’s 24 minutes you’ll never get back—these days his looped repeats of “What, me worry?” seem to mock me at every turn.
In February my daughter, E, reached a milestone: Four weeks off her weekly shot, N Plate, her platelet count stayed within normal range. At the hospital visit with her doctor, to whom I give all the credit for her progress, I asked him how important this number was. “It’s huge,” he said.
Huge is a huge word to a mother’s ears, and not one Dr. B had used before. E’s case, while not the toughest he has faced, has been no walk in Prospect Park, either. When we came to Dr. B, the final stop for many of the toughest ITP cases, we were at our wits’ end, child puffy and steroid-riddled, mom depressed and holding onto the last thread of hope that this doctor would have the answers. After logging in two months of overnights at Westchester Medical Center, the specialists who were treating her there threw up their hands; they were out of tricks. Their next move would have been splenectomy. So in April 2009, five months after her diagnosis, off we went to our second-opinion doctor, one of the world’s leading blood disorder specialists. He was our last hope.
The promise of N Plate, the drug she was just weaned off of, took nearly four months to be realized. And we had to add a pill to supplement it, which I initially resisted. But in late July 2010, it happened: Her numbers shot up, well within normal range, instead of taking their usual roller coaster dive. From that point on, she said goodbye to steroids and IVIG treatments. The new course was working. The following March, we started slowly reducing her N Plate dosage–her numbers were comfortably in the normal range now, and had been for months. By last fall, she was only receiving a tiny dosage and still maintaining healthy platelet counts.
So in January, it was time to see what her body would do without the medication that had stabilized her. A month later, we were hopeful that she would hold her own, but as with any chronic autoimmune issue, even the best specialist can’t fully predict the outcome. Every patient is different; there is no one path to recovery.
Yes, February15th was a “huge” day, the day we started to believe that E may, in fact, be in (dare I say) remission. What a huge relief. And four weeks later, just this past Monday, her platelets were at a very healthy 280 (that’s short for 280,000. A normal platelet count falls between 150,000 and 400,000). I should have been ecstatic. And part of me was.
But the other part was crippled by a new fear: another health issue E was grappling with, this one of a gastrointestinal nature. Could it be Inflammatory Bowel Disease (IBD)–a la Crohn’s or ulcerative colitis? Celiac’s? Or possibly just a passing gastrointestinal virus? (I am doubtful of this, as are both her pediatrician and Dr. B., but E’s dad—always eager to find the easy answer—is convinced that’s all it is.) All will be revealed–next week.
The three rounds of tests now in the lab, this is the “waiting week.” And despite hitting the mat every morning, there’s no amount of Zen that can make this less worrisome. E is feeling it, too. When I implored her to “try not to worry” a few days ago on our ride home from school, she quipped back, “Too late.” Yes, we’re all worried, and not ready for another health battle on the heels of the first one. Whatever it is, though, we’re getting prepared to fight if we need to.
More than a less-favorable diagnosis, dealing with more doctors, experts, symptoms, treatments, and uncertainty, my biggest worry is what another chronic condition would do to E’s childhood. She’s a good kid. She’s suffered enough. So, I’m putting this out there to the universe: Isn’t it time to let her be a normal kid again? That’s my wish. And then maybe I’ll be able to agree with Alfred, that it’s really just madness to worry at all.
The aspirational “Most Wonderful Time of the Year” is upon us and I, lame Jew of little knowledge, once again find myself in regular talks with The Big Guy in the Red Suit, aka Santa.
It’s a curious situation, one I fell into on happenstance with little preparation or knowledge. Growing up with my mom and brother, ours was a Hanukkah-only home, where we lit candles when my mom remembered (typically five or six of the nights). The gift-giving went like this: The first night you received a nice present, the next night you got a book or album, the rest of the nights you got . . . socks. Needless to say, I always had Christmas envy, and not-so-secretly longed to be Catholic, because then I could go to CCD with my friends on Wednesdays, and I loved singing in Latin and always found the stained glass/candle combination to be pretty in a mysterious kind of way.
My mother worried about my impending conversion so much that I was forbidden to attend Midnight Mass until my senior year of high school. I’m not sure why she thought the Catholic Church would be interested in adding me to their roster, but when I was 17 she relented, my era of impressionability seemingly expired. She no longer was concerned that I would succumb to the pressure of Father Rob at St. John’s, the church down the block where many of my friends attended, in whose rectory I smoked my first cigarette at age 12.
Fast forward to 2003. Now 33, I became mom to a child who would celebrate Christmas and yes, believe in Santa Claus. My relationship with Santa–though relatively short-lived–is an intense one. You see, I have been bestowed with the mystical powers of a telepathic connection to SC, even in December, his busiest month. I know not to overuse this power, as he has a lot of lists to read right now, and is overseeing multiple elf-filled production lines to check them all off. Santa’s got a hard deadline, I’m well aware. So I keep it brief, these conversations.
It does come in handy, being able to talk directly to The Man and hearing his quick responses, always of the reassuring kind. You see, my Santa is a New Testament kind of guy. He forgives most kids their trespasses, as long as they’re good most of the time and they try really hard to be kind to others, even their almost-step-brothers, and don’t leave all of their doo-dads all over the house. The threat of coal-filled stockings is not one my Santa uses often. That’s saved only for truly evil children, and I know none of those. Truth be told, my Santa is a softy, a wise friend, a green lighter of wishes large and small. He offers constructive criticism but his overarching theme is being pleased with the progress. He’s an affable, big-picture guy.
While Santa came to me through marriage, after we split up, I was left in the dubious position of winging it with the Santa rules. Kind of like when you get a surprise essay test and try to psychobabble your way through it, not realizing that the more you write, the larger the hole you dig for yourself. This is all fine and good until your child reaches a certain age where they start to compare notes. Or when you end up in a blended family where your partner has more definitive rules (and scoffs at your made-up ones). Then you find out other protocols, such as:
- The aforementioned almost-stepbrother who, once a year, receives a phone call from Santa. This led to a heated discussion on cell phone reception in the North Pole. [I suggested that Santa came down to the U.S. for that call, which he does occasionally for test runs and to map out his route. This explanation was met with befuddlement (the boy) and affirmation (the girl).]
- The letter from Santa, all in cursive, that E’s friend received (who complained it was too long. Obviously not my child.)
- In my ex’s family, under “From” on the adhesive tags, it would read, “Santa, Mom and Dad.” Except for the big presents–those would just be from “Mom and Dad.” They didn’t want the Big Guy to get sole credit for any of it.
- In my fiance’s family, however, most of the gifts are from Santa alone; only one or two of the big ones are from us, with no Santa involvement whatsoever. We continue to negotiate our way around this sticking point.
- In fact, I’ve only uncovered one “universal” rule in all of this Santa-lore: Always leave the cookies out for him–and make sure he takes at least one bite, because there’s no better proof that The Big Guy was there.
Now that my daughter is almost nine, though, she may be onto some of my tricks. When she noticed some Amazon packages delivered to our door, she was quick to accept my lame explanation that some things are just too heavy for SC’s sleigh, what with all of the other presents and Donner having back issues lately. So he has them delivered. She also suggested we get wrapping paper, under the guise that since the elves are working 24/7 now, sometimes he asks me to finish the job. Seems my early fear–that she would one day be traumatized and angered by all of this mythology and deception–is being proven unwarranted. If she knows, she’s not letting on, because the payoff of believing–or seeming to believe–is just too good.
This would all be OK except for one complication: K, her 10-year-old almost-stepbrother who lives with us half the week, is a true believer. So Santa–with all of our conflicting protocols–remains a key part of Christmas. At least for now.
Before all that, though, comes Hanukkah. Today I will resurrect the menorah from the basement and vow to light the candles at least 60 percent of the nights, as I was taught long ago. E likes Hanukkah, and she likes socks, too. On some level, she knows she has it good, especially this time of year. Her only complaint came last week, upon exiting the school bus: “Mommy,” she implored, in that tone of half-annoyance that eight-year-old girls seem to master, “Why don’t we celebrate Kwanzaa?”
Happy Hanukkah. Merry Christmas. Happy Kwanzaa. And a Happy and Healthy 2012.
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