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.
It’s been awhile since I’ve hit the blog, and not because there wasn’t much to say. This summer’s been chock full of drama and reflection and some disappointments.
In early June, I learned of an old friend’s sudden passing—way too soon and heartbreaking for anyone who was lucky enough to know him. I think of his family often: his wife, and the way they would huddle close in conversation. She was his true north, he, her biggest cheerleader. And his kids: I didn’t get to know them, but I have no doubt that he was an amazing dad, infusing their days with empathy, laughter and his infectious joy for being alive.
His spirit is another reminder of how I aspire to be, reminding me of one of my most-often-used parenting mantras. Since she was little, and even before she got sick, I would tell E to try to “be Piglet.” Funny, in a way, because her favorite stuffed animal—the one who has joined us for every hospital visit and is by her side every night—is Eeyore, whom I’ve always loved and, in fact, this Eeyore used to be mine. There’s something so irresistible about that sad-sack donkey. Her hand-me-down Eeyore is pretty threadbare now, and I long ago lost his detachable tail (bad Mommy), but he’s still holding up pretty well considering. I think it’s all the love.
Why Piglet? He’s little, but he doesn’t let that stop him. He’s feisty, he’s capable, and he’s got a big heart. He loves his friends, and he works hard at things. Sometimes, he doesn’t always know his limitations. Sometimes he frets. Sometimes he makes mistakes. But overall, it’s his attitude that makes him the one to emulate, especially in the more trying times.
More specifically, there was a Winnie the Pooh story I often read to E when she was little. Piglet was inviting all of his friends over for tea and special cupcakes. He had a new recipe and was very excited to bake for them. But he made some sort of mistake in the mixing, so instead the cupcakes became one massive, doughy pile. When he saw it, he was at first distraught. But then he took a deep breath, regrouped and said, “I’ll just call this my ‘Make-the-Best-of-It Cake’!” So he decorated it. Soon his friends came over, they had a great time and complimented him on his baking achievement.
Be Piglet. Make the Best of It. That’s what I always tell E to try to do. Life is not always perfect, and sometimes it’s hard. Hers has had many challenges, for sure. But we have no other choice than to make the best of it. So when we got disappointing news at the end of June—the endoscopy/colonoscopy still showed widespread inflammation, meaning her Crohn’s was still active—we dealt with it. It was not good news. She needed to change medications immediately, but we worked with her doctor to schedule the infusions around sleep away camp, which E had been anticipating for months. She still has pain, which is not optimal. But it’s not debilitating (a four or five on the 1-to-10 scale), lasts about a minute or two where it used to last much longer, and has lessened to 1-2 episodes a day. Overall, she’s having a surprisingly good summer, considering how it started.
E really is making the best of it. I’m proud of her. Now I’m trying to remind myself that I need to be Piglet, too.
“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
Three years ago today . . .
. . . 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.
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.