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.
“I am not what happened to me. I am what I choose to become.” —Carl Jung
I have a lot to say right now but not much appetite to say it. Thoughts swirling around like mini-maelstroms, some helpful, some not. Like a turtle my M.O. has always been to suck myself back into my shell when times are tough. I don’t want to be seen as anything less than plucky, hopeful, a fighter. I don’t want people feeling sorry for me, or us. But I feel compelled to poke my head out and say it right now. The writer in me won’t let me go it alone.
It’s been a few weeks since learning that my nine-year-old daughter, E, who just recently went into remission for a rare blood disorder, ITP, now has been diagnosed with another serious, chronic lifelong condition: Crohn’s Disease. Ever since, we’ve been dealing with the immediate crisis of getting her over this flareup. The interim plan seems to be working: The inflammation was down somewhat last week, and she seems to be having fewer bouts of pain and they are of less severity.
All promising. But it’s not helping much with the crushing blow of having something else to contend with, getting in the way of just living a normal life (whatever “normal” is, still not clear on that). A carefree childhood, I guess, is not in the cards for E. And maybe it’s not in the cards for too many children these days. But I still can’t help but lament the fact that E’s path has been so difficult—downright treacherous at times—even for a tough kid like her. At what point will her mind say, “Enough!”?
We’re back to taking it day by day. And it’s going OK, I guess. Though it often doesn’t seem that way. Exhausted all the time, I’m having trouble focusing on things like work, completing errands and finishing household tasks. Like laundry: I get to the last mile but then can’t seem to put it away, so there are piles of clean laundry sitting in baskets for days. Mocking me.
So I carry on and try to accomplish the important day-to-day tasks as best I can. And I try to pepper our days with things to look forward to. And I try to find funny things to laugh about, because life is still funny no matter what. But it’s a struggle.
I know that this is hard and it will get better. But I just want this part to be over with.
My therapist says, “It’s OK to feel devastated by this news. Allow yourself to do that. It’s devastating.”
E says: “I don’t want to take all of these meds. They may help my body, but they’re not helping my spirit.”
Tuesday night E has her first appointment with a child psychologist to help her grapple with her feelings. I’m hoping this will help her. To my mind, she’s a therapist’s dream: articulate, in touch with her feelings and willing to express them, and in need of the kind of help that goes beyond what any parent can do.
Meanwhile, every day I learn of someone else who either has or knows someone with this disease, which I appreciate—we need the support, clearly—but I’m still in that overwhelmed phase where I can’t process all of this. Part of it is culture shock, because we now have gone from the land of the rare (ITP, 1 in 30,000) to the land of the many (Crohn’s, 1 in 200). I’m used to people not knowing anything about E’s condition and having to explain it. I even have a long and short version of that explanation (the short one is about 45 seconds, skyscraper elevator-pitch length). With Crohn’s, seems like everyone knows someone or knows something about it. But not all of the input is especially helpful. (Note to the seemingly well-intentioned: If you want to tell me about your family members who have had this, in the future, please refrain from mentioning that, in fact, one died of it.)
Retreating back to shell: Please forgive this self-indulgent pity party. And my need to get this out there. But maybe it will help get us to a better place.
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.
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.”
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.
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.
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
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.