. . . 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.
“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.