What happened when I was busy making other plans.

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Trapeze Parenting

So here we go again on our journey back to good health. Two and a half years after being diagnosed with ITP at age 6, my daughter, E has now been preliminarily diagnosed with Crohn’s Disease.

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.

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Bravest of the Brave

“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.

Keeping it at Bay (or trying)

I’m long overdue for this catharsis, so hopefully this won’t be too arduous or too heavy-handed, but as the saying goes, here goes nothin’.

Our last hospital visit, nearly three weeks ago, brought good news and the promise of bad. First, the good: E’s platelets were once again at a very healthy level, leading us further toward the conclusion that her ITP may, in fact, be in remission. Two and a half years after diagnosis, this should have been cause to celebrate. But at its heels was the not-so-good news: Despite the fact that the past round of bloodwork testing for intestinal disorders such as colitis, Crohn’s and Celiac’s all came up negative in March, the pediatric gastroenterologist, Dr. S., believed that E does, in fact, have Crohn’s. (Apparently a fair number of her Crohn’s patients also tested negative on the bloodwork but still had it. In the wide world of medicine, they call that a false negative.) We were sent off to do more at-home tests and, depending on those results, the high likelihood of an impending colonoscopy.

This happiness was followed by our looping back to E’s hematologist, Dr. B. After she left the room I asked him, point blank, “Is this going to suck as much as ITP?” to which he replied, “It’s probably going to suck even more.”

Gasp. 

The last at-home tests confirmed the need for a colonscopy. But the doctor’s first available morning appointment isn’t for another three weeks. And so we wait. And, as I have for the past two and a half years–since December 5, 2009, to be exact–I try to keep things as normal as possible.

The good part is, this time of year we’re almost too busy, it being high season with my work (mostly conferences) and E involved in an upcoming variety show, her ice skating show, and B just getting elected to the board of education and now gearing up for that. It seems like spring and fall explode with activities and not enough time to do them all–and I welcome all the distractions.

But in those quiet moments, in between A and B, I’m left with my thoughts. And though I fight every day not to live there, I feel like worry is my undercurrent–always there beneath the surface, ready to bubble up.

The rational mind says, “There’s no point in worrying. Worry when you have to.”

Dr. B. says, “Promise me one thing. DO NOT go online to research this until you know exactly what you’re dealing with.”

My friends ask, “How are you doing?” They want to know what it feels like.

I try to keep the worry at bay. I know—having been on both sides of it, the jinxing side and the optimist’s side—that you’re much better off saving the worry until you absolutely need it. But the truth is, it’s there. It can be diverted, but it cannot be denied.

My child is beautiful and full of life. And we have many happy moments full of laughter. And we try to make the best of things and enjoy the good moments. But at least two times a week, she complains of crippling stomach aches that stop her in her tracks. She’s had worse symptoms, too. There’s something to it—I fear the diagnosis of another chronic condition, promising more hospital visits, pain, and suffering; more to take her away from just being a kid. It feels unfair: Couldn’t she just get a break and be able to say she’s healthy, and know it’s the truth?

I’ve told her the basic facts, without embellishment. But knowing the contagion of moods, I have tried very hard to keep my worry as far away from her as possible. Perceptive and inquisitive, she probably senses in part what’s going on, though. I am not that good an actress, and she’s too good an investigative reporter.

And so we wait. And will face whatever it is with realism and, yes, a good dose of hopefulness. Because that’s just how we roll.

“What, me worry?”

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.

Those Stolen Moments

My daughter, E, nearly nine, is growing up. It’s her job, and one she takes very seriously. I respect that and do my best not to get in her way, and to honor the young lady that she’s becoming.

This is a beautiful and startling age–and since she’s my one and only (aside from my almost-stepson), in many ways all of her stages are as new and fresh to me as they are to her. Now in third grade, E and her friends are growing in so many ways, and dramatically. Seems every time we turn around they look different, have edged up another two inches, their faces now showing real signs of what they will look like when they are older. At this age, they’re picking up information about life, culture, society and assimilating it with astonishing vigor. They’re able to absorb it with a new level of depth and understanding, allowing for deeper, more nuanced discussions about matters large and small, from what it means to be a good person to whether I like blue more than green. (It’s a tie.) They are growing ever more sophisticated and are demanding that we treat them as the young women they’re turning into before our eyes.

I respect that and feel it’s my job to acknowledge and celebrate the big girl she’s becoming. As her mom, though, that doesn’t mean it doesn’t hurt a little. This past summer, driving home from camp one afternoon, E asked me if it would be OK if she called me “Mom” from now on instead of “Mommy.” Gulp. Did she hear that in the back seat? I wondered. My mind said, “She’s growing up. You have to let it happen. Can’t hold her back.” My heart said, “I’ve been demoted!” Were the mushy years behind us? Wow, that went quick. Of course, I agreed–suggesting that if she wanted to call me “Mommy” in private sometimes, or if she just so happened to slip and called me “Mommy,” I was totally OK with that. (Had to get that in.) But if not, “Mom” was fine, too.

Some of the mushy moments we used to have are now being replaced by my awe of all she’s able to do now. On Monday nights, I revel in watching her at her ice skating lessons–not only because of how quickly she’s learning the moves and the excitement and energy she has on the ice, but also because I’m reminded of how far she’s come these past two years, since she was diagnosed with ITP, a rare blood disorder. After her diagnosis in December 2009, for many months she was not allowed to ice skate, participate in physical education, or recess. The risk of injury was too great; any sort of head injury, in particular, could have been life-threatening. Now when I see her zooming around on two blades with abandon, my heart soars as I reflect on how far she’s come and what a big girl she now is.

But the truth is, I don’t want the tenderness of early childhood to end fully. And what she’s teaching me about this age is that those moments may be more fleeting now–and sometimes they seem like stolen moments from another time–but they’re still something we both need and want from one another. I hope that never changes.

This morning at the bus stop reminded me of this evolution. There we were, embroiled in our typical hair-brushing power struggle, she running away from me, me offering her three options: 1) Let me brush the knots out of your hair; 2) You brush them out; or 3) I will make an appointment for a haircut to end all of this fun. (I notice the calmer I say #3, the least-preferred option, the more results I get. Today I was calm, so she came back willingly and brushed her own hair.)

Then, a block away we saw the bus. We had only one minute. This is when I usually would give her a staccato kiss, saying something like, “Quick! Before anyone sees!” Humorously, but acknowledging her desire that this be a private moment. So we did that. But then, just as the bus arrived, in full view of her friends, she gave me a big, long, mushy, impromptu hug.

Smile.

The Santa Chronicles

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.

Time Is a Funny Thing

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.

 

E being wheeled to the ambulance to Westchester Medical: December 5, 2009

“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

Between Two Worlds

Much like a comic book heroine, these days I operate in two different worlds with two distinct identities.

In the first frame, I’m much like many other working moms you know: juggling the hectic schedule of an active eight-year old with demanding clients, deadlines, conference calls and meetings. Some days, the circus culminates in a semi-comic frenzy of small details suddenly remembered, mishaps narrowly avoided, the denouement a later-than-preferred bedtime, 9:03, not nearly 8:30, a sigh of regret but then another acknowledging all of the balls not dropped, relishing the sweet goodnight of a content child. A good day. Others are more calamitous: the client who needs curbing; the child who needs deprogramming; the dinner not yet thought about, much less made; the bag for 6am trip tomorrow not yet packed (and it’s 10pm); the e-mails requiring answers filling up my in box. Not enough hours in the day, and not enough energy to tackle it all. The contagion of stress not escaping our goodnight rituals. A sigh of resignation, exhaustion at not being able to handle it all–at least not well. These are the flip sides of the world I’m mostly inhabiting these days.

But then there’s my other world: The one where I’m the mom with the sick kid, the one who dropped that first world to live fully in a completely different one–one with doctors and twice-a-week hospital stays and overnights and blood tests and medications and consultations with other doctors, therapists, and healers. Two weeks after contracting H1N1, my daughter, E, was diagnosed with ITP, a rare blood disorder in which her body’s antibodies kill off its platelets in alarming number and voracity. So in December 2009 I unwittingly got a new job: full-time caregiver. It’s the hardest job I’ve ever had–even more challenging than parenting (that’s #2)–but one I wouldn’t have outsourced to anyone.

It became my mission to help E find her way back to good health, and nearly two years later, the prognosis is much more promising than ever. I’m ready to quit this job for good–and her progress has made that seem plausible now.  But as with many autoimmune diseases, there is no one, sure path to recovery–in fact, her doctor won’t even use that word, since most chronic ITP cases at best go into remission vs. a full recovery, only to come back weeks, months or years later, sometimes inexplicably. So while her results have been excellent, surprising even, it will be years before we’ll know whether this return to good health signals an end or just a pause in a longer tale not yet written.

These days, though, I spend most of my time in the first world with brief forays in the second. Once a week I take E for her shot at her pediatrician; every night I give her a pill; at the recommendation of a different doctor, I mix vitamin D and acidophilus into her milk; and once a month we go to the hospital where her levels are checked, medication is adjusted, and I discuss her progress with her specialist, an amazing doctor who deserves the credit for her dramatic turnaround. And there are the consultations with school, discussions with friends and colleagues inquiring about her progress, and other moments where World #2 meets World #1. At these times, I recall that there’s something different about E, and I feel the dissonance of being between two worlds, the regular-working-mom world and the caregiver-with-child-with-chronic-illness world. It feels dizzying, a confusing array of facts and priorities and opinions and conflicting obligations–and sometimes I have trouble reorienting myself to get back to my center, the place where I can easily navigate what matters most and what my next move should be.

Undoubtedly, to a significant degree I have set the spinning in motion. Very early on in her treatment, I advocated that E be treated like every other kid as much as possible–a reorientation, too, from her first year with the disease. It’s not a denial–it’s more of a steadfast sallying forth that I’m advocating, for both of us. We cannot, will not, let this stop us. She cannot, will not, succumb to defining herself as a “sick kid.”  Much of second grade was spent recalibrating her behavior–dealing with the psychological aftershocks and raising the bar on expectations so that she would be held accountable for her actions, just like any other kid her age. While I believe this is the right approach, there are times when my worlds collide and I’m left wondering which world I’m in and who I will need to be tomorrow.

Who Cares for the Caregivers?

A few weeks ago, on the way home from a day of meetings in New York City, I got a text from my fiance, B: “Just got off the phone with my mom. Dad is in ICU. Doesn’t look good right now. I am going to start looking for flights.” The next day we were off to Orlando, and the next two days were spent mostly in the hospital, where he was suffering from congestive heart failure and pneumonia.

That wasn’t the way I had wanted to meet his parents. But it is becoming increasingly apparent that life has a way of doing its own thing, often without your consent. There was his dad, sedated and hooked up to a ventilator and a plethora of machines monitoring heart rate, blood pressure, oxygen levels. And there was his mom, at his side, where she had stayed for nearly two days since he had coded and it took nine minutes to revive him.

I’ve spent quality time in hospitals these past few years. Any fear that I may have had before has long since disappeared since December 2009, when my daughter, E, was diagnosed with ITP, a rare blood disorder in which her body’s antibodies attack its platelets. For nearly a year we spent at least one day a week at one of three different area hospitals. In the first six months of her illness, there were many, many overnight stays, as sudden drops in platelet counts require immediate attention that goes beyond day- clinic hours. So when I came to see B’s dad, I was thinking as much about his mom and sister as I was his dad’s condition. I know how it feels to be the one sitting by the hospital bed. Waiting. Hoping. Praying. Trying to be strong.

Who cares for the caregivers? Somebody has to.

Here’s what I learned from being the one on the front lines: 1) A friend once told me, “People want to help you so let them.” I have always had a hard time taking from others–I’m a chronic giver, to a fault (see blogs on failed marriage)–so this idea is innately difficult for me. But exhaustion has a wonderful way of wearing down your pride. I accepted kindnesses from friends and family. I leaned heavily on my loved ones in all ways: B, my mom and brother especially. I was lucky–there was no shortage of support for me or E.

2) Replenish yourself. I have custody of E so we are together most of the week. But Sundays she is with her father, and this was my day to regroup. I overcame my guilt that I was supposed to be by her side 24/7 and took time for myself. Many a Sunday B and I would go hiking, go out for brunch, go swimming in a nearby lake, take the dog out for a walk. Sometimes I wouldn’t talk about E and her illness, sometimes it was all I could talk about. Our Sunday rituals replenished me so I could continue to be strong for E and whatever the next week would bring. (Side note: There’s nothing like a life-threatening illness to test your relationship. Our bond only strengthened; at long last, I had picked a great guy who was willing to stick with me no matter what.)

3) Get help when you feel you might be slipping. Some people like support groups, and I’m sure they can be very healing. In my case, since E’s illness is rare, the only support groups were online. I tried it, but reading about other people’s experiences was disconcerting, often discouraging to me. I saw a therapist, which helped for a while, though as time went on our bi-monthly sessions increasingly devolved into cry-a-thons.

After five months with little progress and no clear path toward recovery, I knew I was slipping into depression when her former doctors mentioned splenectomy and part of me thought, “At least then this might end.” Suddenly my mind wasn’t thinking clearly anymore. I went to my doctor instead, who confirmed that I was, in fact, suffering from depression. He explained that the human mind is not equipped to handle constant stress for more than a few months. After that, it breaks down. I was put on a three- to six-month course of antidepressants, which lifted my mood enough for me to get off of them after three months–my goal. (I’m an anti-pill sort by nature.) But they allowed me to think clearly again and regain a more hopeful outlook.

Who cares for the caregivers? First, we have to care for ourselves. But then we need to reach out and get the help we need so we can keep giving. And one day, if you find yourself in this role, reach out to me. I’d be so happy to help.

Taking the Plunge Into Parenthood

I had dinner with a friend a couple of weeks ago. She has a highly successful career, a great relationship with her husband and, in the 13 years in which I’ve known her, has vehemently denied any interest in having children. Now 37, she finds herself suddenly on the fence on this issue. She knows that if she and her husband do, in fact, decide to take that never-going-back plunge into parenthood, they can’t wait much longer. But she’s not sure whether they should. She quipped, “No one who has children will ever tell you they made a mistake.” True, that.

To Parent or Not to Parent. Obviously, their choice, not mine. I was not about to weigh in on what would likely be the biggest decision of their lives. There is no “right” answer. It’s what feels right to them that matters.

So I had no answers for her. But this made me think about the choice of becoming a parent. For those of us who had children later than when our biology may have liked us to, this is usually a conscious act. I had my daughter at 33 — like early November foliage in the Hudson Valley, a little past peak (which, if you went by the egg donor ads Sony Theaters used to run, is 18 to 32.) I took the leap after losing my job and deciding to become a freelancer. The time seemed right, the dog wasn’t quite cutting it anymore, and I felt ready — or as ready as I ever would be. My heart told me what I needed to know: I wanted to be a mother.

Split screen now to younger parents. I often wonder if they feel the need to soul search as much as those of us who waited longer. Does it feel like quite the same leap to a 23-year-old mom as it does to a 37-year-old one? Does age add complexity to what could just be seen as a natural next step, after finding a suitable mating partner? My hunch is that with younger parents, there is more action, less thought. Which makes sense: They haven’t had all of those years as adults without children, so there’s not the same basis for comparison: Life Before vs. Life After.

And when I think about my friends who took the plunge later, as I did, it brings me back to my journey with my daughter, as she fights her way back to good health. When I’ve relayed the story to fellow parents, many times they respond, “I can’t even imagine what that must be like.” Except here’s the thing: I think they can. When you’ve taken that conscious leap into parenting, having a child who gets sick — life-threateningly sick — is a scenario you’ve played. It stays in the back of your mind, in the “But what if?” part. You keep it back there for good reason — it would consume you if you brought it to the fore. We all have these fears, either the moment we choose to become parents or later, after our children are born.

And here’s the answer to that “What If?”: If that happened, you would do everything you could to make your child healthy again. Would that make you heroic? Brave? Not especially. It would make you what you already are — a parent. No matter what, I feel grateful and fortunate to have taken this plunge. My life has never been the same, and I mean that in the best possible way.