What happened when I was busy making other plans.

Archive for January, 2011

What You Get to Choose

The past year and a half has been a time of extraordinary challenge and change for my daughter and me. And like anyone who has either experienced or had a loved one go through a life-threatening condition, invariably when you are able to take a step back you reflect on what’s happened. That’s human nature, and it’s why you hear cancer survivors like Lance Armstrong say they are thankful for the illness because it made them who they are today–people who are better able to appreciate their lives.

In my last year of high school, the senior play was “Our Town.” I played Mrs. Webb, Emily’s mother. One of my lines stuck with me, all these years later. After she scolds the precocious Emily for reading books at the breakfast table, Mrs. Webb explains, “As for me, I’d rather have my children healthy than bright.” (Haunting, given that Emily ends up dying in childbirth in Act Two.) Then, I didn’t understand that sentiment. I thought she sounded cold and sort of foolish. Who wouldn’t want a smart child? But now I do. Without your health, you really don’t have anything, do you?

My mom always said there’s nothing more important than your health, but this was just a catchphrase until one day my daughter woke up and didn’t have hers anymore. Months of good, bad, and horrible moments followed–far too many spent in hospital beds, too many needles, infusions, drugs, and far too much bleeding. Our Magic 8 ball, stored in our at-the-ready overnight bag, was little help: It offered as many positive as negative answers to our frequent queries about what would happen next.

Did we choose this reality? Of course not. It just happened. Or maybe it was meant to happen, to make us both stronger, better people. A “devout agnostic,” I don’t rule out the possibility of God or some sort of higher purpose, but I am not confident enough to tell you with certainty that there is a higher plan. Or maybe it was karma. I have tried to be a good person, but like anyone, have made my share of mistakes. Did I wrong someone so much that this was my payback? I didn’t think so, but did not completely rule out the possibility.

When something really bad happens, even a devout agnostic has to wonder about the grand design. There were weeks, early on, where the question that wouldn’t take leave of my thought bubble was, “Why?” or “Why is this happening to her/us?” Or the maternal version, “Why couldn’t it happen to me and not her?” I would have gladly taken the hit if it meant she wouldn’t have to. It was the sorrow and anger before the acceptance, the first few stages of grief that accompany a sweeping trauma.

Or maybe it was nutrition. My thought bubble filled with food items on dinner plates. She ate reasonably well; like many kids, E was a picky eater, but she also had a penchant for obscure vegetables and fruits like hearts of palm and currants. But perhaps she was lacking in some essential vitamin or mineral. It was true that I had yet to find a vitamin that she would willingly take, but I tried to make sure she had a well-balanced diet of good, often organic and local foods. And she had yet to step into a McDonald’s or drink soda. So while there was room for improvement, her diet was probably a B/B+ overall, I surmised.

It now seems clear that my daughter’s illness did not come to us because of God’s will, karma, or any preventative measure I failed to take to ensure her well-being. We all strive to be healthy and have robust, rosy-cheeked children who say “please” and “thank you” without so much as a knowing glance, but when the scales tip decidedly toward “sick,” the truth is, there is often little we could have done to prevent it. As a parent, this realization, while letting me off the proverbial hook, was disconcerting; we want to fix what’s broken, and up to that point, I was under the delusion that I had special powers to make almost anything disappear. But this was not my choice, and there was no quick fix to make it go away.

How, then, could I make it better? What did I get to choose? I flash back to a time long before mommyhood. It was early on in the fall semester of my freshman year at Syracuse University, an otherwise-wonderful place with far too much snow. (“Lake effect,” no less. Yikes.). I remember one crisp afternoon in September. I was walking across the Quad, returning to my dorm after my last class of the day. It was one of those mostly sunny postcard days where everything feels good and everyone seemed joyous, well before mid-terms. I took a deep breath and thought to myself, “I get to be the person I want to be here. I can start fresh.” And then: “I will choose to be positive. I will choose to be the fun person I can be–I will try, at least. I will not be a whiner. I will not bring others down with negativity.” That was the K of old–the high-school version, a typical teen suffering from complacency, big hair (It was New Jersey in the 1980s. Need I elaborate?), and a shortage of confidence. (In hindsight, those last two may have been related. But I digress.)

From that September afternoon on, I have tried to find the possibility, the good side of most situations, to be a person who offers a sense of hope to others. I’ve found that even when something bad happens, there are still helpful outcomes, even if it’s a sad but well-earned life lesson. (The following year, when 35 S.U. students were killed in Pam Am Flight 103, the prequel to 9-11, we learned that life is not fair, and can be fleeting, tragic, and unpredictable. And that bad things can–and do–sometimes happen to good people. But we also learned that we were together in our grief and that being part of a community of people who care about each other can be enormously powerful and healing.)

I am not blind to the negative. I, too, feel the need to vent about bad days or boneheaded things certain people do or say. (Whomever could I be thinking of? Hmmm . . .) These days, though, I just choose not to live there. I choose a different lens with which to color my life.

So, when faced with the challenge of E’s faltering health, I was determined to keep our spirits up, to fight for the best possible care, and to find a way out of the ER. Despite the fact that, according to the head nurse at our local hospital, E’s was the worst case of ITP she’d seen in her 18 years there, my daughter was going to get through this and get better. And, with a lot of help from my family and friends, I was going to do everything in my power to make it happen. And it started with staying positive.

And will she get better? These days, according to our Magic 8 ball, “It is decidedly so.”  Maybe this positive thinking thing is contagious.