It’s funny. So many times in my life I couldn’t wait to get to the end, thinking that would be the good part, the part where the satisfaction of a great accomplishment would be fully felt. There were all those self-imposed deadlines: finishing college in four years (tuition was steep), getting my first big promotion in my twenties (29), walking down the aisle before 30 (29 1/2), becoming a mom by 35 (33).
Lo and behold, the finish line wasn’t nearly what I expected. All too often, the sense of fulfillment I anticipated was replaced by a longing to achieve the next big goal. Not just arbitrary, those deadlines were downright damaging. They kept me from acknowledging my present, which meant that I couldn’t see what was right in front of me: an unhappy life.
A few years ago, a culmination of events shook me off the “what’s next” treadmill and enabled me to take a long, unflinching and uncomfortable look at my life. I started examining myself, my feelings, what and who mattered. I listened to my heart and found a path to the journey I wanted to take. A casual student of Eastern philosophy for several years, the abstract was finally resonating for me. I wanted to pay attention to every moment and try to enjoy what was happening right now versus what could happen in my future. I was on my way.
But then, my daughter, E (now seven), got sick. And our year of horror, now just behind us, left me humbled and more grounded than before. I learned more life lessons. First off, love really does trump all. If you have love and support, you can get through almost anything, even things you’d never imagine or wish on another human being. I learned to ask for help and to accept it when it was offered–and that people really want to help so let them. I learned to be strong in front of E, holding back the tears just long enough to get out of the room (and to always take tissues on cafeteria trips); to celebrate the fun times (some manufactured, some spontaneous); and to acknowledge the abject suckiness of it all but not be overtaken by despair.
So now I”d like to get back to a more Zen-like way. For seven months now, we’ve been able to manage her condition out of the ER and without the use of steroids or IVIG. Her doctor is one of the top hematologists in the world. He has been both savior and friend to us; I cannot adequately express the gratitude I have for him and his staff. The medication she takes now, the latest product from the biotech industry to manage platelet disorders, seems far more benign: By all appearances, E looks great; she’s lost the steroid puffiness and extra weight, has grown four inches since the summer, and has the energy of her old, healthy self. But before I can fully immerse myself in this much-improved present, I find myself replaying the flashbacks. Like a bad horror movie, the scenes just won’t go away:
At the ER at Westchester Medical, one of the residents put an IV in her artery instead of her vein. E complained her hand was cold; my mother then noticed it was turning blue and called the nurse in, who fixed the problem. The resident–a cocky sort–was too embarrassed to acknowledge his mistake, leaving the room mumbling excuses. But E forgave him, saying, “He didn’t mean to. It was an accident.” I was so proud of E for her empathy that day. She was a better person than I was.
Easter Sunday. Her father, having been five minutes from the hospital and noticing that she was showing signs of bleeding, made the decision to bring her back home, an hour and a half away, instead of taking her in for treatment. By the time I saw her, she looked terrible; her signs were multiplying. The laid-back doctor on call told me to bring her to our local hospital first thing the next morning where she could be treated; I brought her in at 7am, found out her levels were at an extremely low 2,000, and that he was wrong, she couldn’t be treated there. I had to get her down to Westchester. We arrived around noon. There, I begged the ER nurse to try to get the IVIG as soon as possible because she was so low; he brushed me off with a “We see this all the time.” Angered but determined, an hour and a half later I implored the new resident to try to hasten the process. I don’t know if she was incompetent or just disinterested, but I was met with deaf ears again. E did not receive treatment until 9:30 that night. The only small comfort was we were assigned our favorite night nurse, Crystal, who seemed as appalled as I was at the chain of events that had occurred and the lack of response from her colleagues. As she finally received her medication, my inner thought bubble recited, “This is bottom. It’s only up from here.” Of course, I didn’t know that for sure, but thinking that this could be the toughest moment helped me get through it.
Soon after, her former doctors threw up their hands and declared her a chronic case. They had exhausted their arsenal of ideas; the four-week chemotherapy drug didn’t work, so all they could do was continue to temporarily boost her with heavy-duty IVIG and steroids, sending us on the psychotic roller coaster yet again, just to return a week later needing more. My beautiful girl was unrecognizable to me now; she looked and felt awful much of the time. It was becoming obvious that their temporary fixes were almost as bad as her condition; the only other potential solution they could offer was a splenectomy. I knew it was time to defect.
Truth is, there were a few times where she could have died: Three percent of children with ITP die from bleeding out. According to the head nurse at our local hospital, E was the worst case she’d seen in her 17 years there. While we were going through this, I was so focused on getting through those difficult moments that I wouldn’t let the fear cripple me. Now I realize it is scarier from the rear-view mirror, when I can fully acknowledge how close we came. I now have a deeper empathy for what other parents with critically ill children experience. I wouldn’t wish it on anyone.
In the Bible, there’s the story of Lot’s wife. They are leaving the fiery ruins of Sodom, their hometown. Lot warns her not to look back. But she just can’t help herself. She can’t help but take one last look at the disaster, even though she knows no good would come of it. It feels a little like that for me right now: I can’t help but look back at what we’ve been through, even though I know what’s there and it’s not pretty. And I know that’s not where I should be looking.