The Tenacious Miss E
Eleven years ago today, she came into my life and it’s never been the same.
E, you’ve taught me so much. I am so grateful for you, every day. Your courage, humor, warmth and indomitable spirit inspire me to be better. You fight so hard to live your life fully, as if nothing ever happened to you–no parents divorcing, no chronic illnesses, no pain to contend with. And you succeed! So brilliantly.
Look at you. A young lady now. You’re everything I hoped for and more in a daughter: kind, effervescent, smart, clever. Beautiful inside and out. And so funny. You make everyone laugh. You have many talents, but you’re not boastful about any of them, because you don’t see yourself as better than anyone else. Many years ago, I told you the lesson about how to have a friend, you have to be a friend. You got it immediately. You are such a loyal, loving friend. It makes me proud to hear you with your friends, how encouraging you are. How you listen to them. You care so much about the world and you want to make it better with your whole self. I love what you said recently to me: “Mom, when I grow up, I want to make a million dollars, so I can turn the whole town solar.” You care deeply about the earth and animals and what’s going to happen to all of us. I love that so much about you. And your sense of fairness–you never want to be treated any differently, no special favors, despite all you’ve gone through.
And most of all, I love that you’re such a fighter. Nothing will stop you from living a full life, because you’re so, so strong. My brave girl. You make me want to be stronger, to be what I need to be for you. I love you, my tenacious Miss E. Happy birthday. 
Be Brave
“Before I knew you, I thought brave was not being afraid. You’ve taught me that bravery is being terrified and doing it anyway.” — Laurell K. Hamilton, Blood Noir
That’s it. Exactly. Since E was diagnosed with Crohn’s Disease last June, the near-constant din of worry and fear has stayed with me at varying volumes and intensity. Right now, it is my music.
Last week, E’s doctor informed me that E’s latest test results revealed lower-than-optimal drug levels. I was told to be on alert for any renewed symptoms and to report them immediately, at which time the doctor would likely add a medication. Despite my frequent inquiries about how she’s feeling, E didn’t let on that the pain has returned. Until Monday night, when she spilled the beans that she’s been in pain off and on for the past week, and increasingly so.
“Why didn’t you tell me until now?” I asked (calmly, because I am well aware of the contagion of moods, and the last thing I want to do is to raise her anxiety level).
“I wanted to make sure that’s what it was,” E said (as in, not just a passing thing).
I get it. (Though I wish she’d told me sooner. We’ll have that conversation another day, when she’s well enough to hear it.) She doesn’t want to take more drugs. I don’t blame her. I’ve been pushing the doctors to get her off whatever we could as soon as we could, and it’s worked pretty well since the summer, where her flare necessitated multiple meds and, as a last resort, a four-week course of steroids. Her admission must have felt like a failure; like we’re taking backwards steps. Are we too late to stop it from a return to last spring’s debilitating symptoms? Or will she start feeling better soon? In my research and conversations about Crohn’s, the stories run the gamut. There is no one typical path. So we don’t know which road we’ll be on, which makes uncertainty our reality.
Uncertainty is hard for everyone, especially a planner like me. But when you just don’t know what your tomorrow is, it reminds you to celebrate today. Today, E is home. It’s not a great day–she’s not feeling well, nauseated and exhausted. But here’s the flip side: I get to spend the day with her. I get to be the one who tells her it will be alright. More than anyone, she trusts me with her care. And I will not let her down.
E inspires me with her innate bravery, her fierce determination to live her life fully and be like every other kid. But I need to be brave, too (these bracelets–called Bravelets*–remind me to be strong for her). I’m here to shoulder the brunt of the worry so that she doesn’t have to.
“It’s not the size of the dog in the fight, it’s the size of the fight in the dog.” — Mark Twain
*Bravelets are wonderful bracelets where $10 goes toward the associated cause per bracelet. They all bear the “Be Brave” motto and come in different colors depending on the disease/disorder/cause. (For the ones I wear, the $10 goes to the CCFA, the Crohn’s and Colitis Foundation.) There are bravelets for cancer, autism, heart disease, and many other diseases and disorders. http://www.bravelets.com
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
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.
Running in Crocs 