“Here is where you need to go. I’ve called them and they’re expecting you. You need to leave as quickly as you can”. Numb and silent, I looked at the piece of paper the pediatrician had placed in my hand. It had the name of the pediatric cancer center at a university hospital about thirty miles away, and the name of a doctor who was waiting to see us and our seven-year-old daughter, Embree.
So began a journey that changed our lives forever and that continues to today. That afternoon the specialists diagnosed Embree with leukemia. Twenty-eight months of chemotherapy, 11 hospitalizations, and countless trips to the cancer clinic and the emergency room later, she is healthy, happy and thriving. Periodic visits to the cancer clinic for bloodwork raise our stress level, and will continue to do so for several more years. Fortunately, her prognosis is good and we have every reason to hope that she will live a normal life, although she will always be under the care of an oncologist.
Before that day, a little over three years ago now, my “mom life” was like that of many other people who are fortunate enough not to be worrying about where the next meal is coming from, or about access to medical care for their families, or, for the most part, about violence in their neighborhood or school. We have three daughters who are spaced far apart, and I wasn’t working outside the home at the time, so my days flew by in a blur of drop-offs, pickups, carpools, dance lessons, math tutors, play rehearsals, naps (for the baby, and, when I was lucky, for me, too), cooking, volunteering for various school and church activities, trips to Target and Harris Teeter, trying to stay connected to my husband, exercise (in the words of Woody Allen, just trying to stave off the inevitable decay of the body), and soul-feeding acts like reading (which I mostly squeezed in while waiting at the dance lesson or the math tutor). Plus, interwoven into each day, I was struggling to tell my girls things and model certain actions and habits that I wanted them to have…I was trying to raise good people in the midst of everything else. I loved my life, but sometimes I just felt plain tired and, frankly, lonely. It wasn’t that I was alone…that rarely happened! It was more that, in powering through the to-do list and the schedule every day, I sometimes craved a real conversation, a real interaction with people around me that went beyond a quick report about how the day or week was going.
I didn’t lack loving friends and family. I’ve always been lucky in that way. I have people who care about me and my family and want to connect on a deep level. It was more that I felt propelled by the calendar and days and weeks slipped by when it felt like we were going from one event or obligation to another without much conscious thought. It felt isolating at times, and most other people I knew were doing the same thing. And then Embree got sick. Things changed really quickly. Our lives became all about getting her well, and most other things were pushed away, at least temporarily. The leukemia sucked us into the world of the children’s hospital, of chemotherapy and the attendant side effects, of keeping Embree safe when the chemo ravaged her immune system, and of educating ourselves about her treatment. We learned how to get vile-tasting liquid medicines in her. Then, we learned tricks to help her swallow pills. We became adept at doing home infusions of chemotherapy. We debated about when and how to tell her that she would lose her hair. We were always looking about two weeks ahead, but otherwise we didn’t think much about the future.
There was another huge change. For my husband Dennis and for me, carpools, volunteering and cooking mostly disappeared as people stepped in to help. It was astounding. I didn’t cook for months. I didn’t drive my other two children anywhere. People quietly took over commitments I had made at church and at school. We even found cash in our mailbox more than once. It actually felt, physically, like hands and arms were around us, holding us up, as we slogged down this hard road.
Dennis at first had a hard time accepting help. And certain things were embarrassing. The day we left in a blur for the hospital and ended up being there for about a week, I left the house a total disaster area. Friends mopped the floors and cleaned out the refrigerator! (I don’t even want to know!) But we really didn’t have a choice. It was taking more than two adults to keep the train on the tracks. It was very primal – we were single-minded and incredibly focused. Our lives were stripped down: our purpose was to get this child well, committees and work and church and dance lessons be damned. I know our two other girls suffered. We were doing our best with every breath we took.
A really beautiful thing about this whole period was how, in their efforts to help us, people revealed those deeper connections that had probably always existed but which can get lost in the daily hustle. When I was in the hospital with Embree, I would often spend time looking through emails, text messages, and notes, or sitting and talking with people who visited. In those communications, people were willing to share their own experiences and their own pain and their own sorrows, and to bear witness to ours. In doing our laundry and cooking our meals and taking care of our children, they were putting themselves on the road with us. We didn’t have to face the task of getting our family through this crisis alone.
In spite of all the help we had, I thought more than once that chucking the to-do list wasn’t all it was cracked up to be. If, at any moment, I could have gone back to the busyness, the bustle, the overscheduling, the time in the car, the barely-getting-by-ness of our lives “before”, I would have done it. Oh, to pick up my healthy daughter in carpool! Oh, to wait in the parking lot of the dance studio with the baby while Embree danced! Oh, to go to the Harris Teeter and negotiate with the girls as they made their cases for what should go in the basket! There is value in paring down, to be sure, but there is also value in the zillions of little things that make up our busy days. Those hectic days made up the life and stories of our family and my hope was always to return to them.
But what to keep? What, in today’s common parlance, was the take away from this hard time? My fault in those crazy “before” times wasn’t necessarily in having a busy life…it was more in not noticing things and people and situations around me and not always being truly present to my friends and family because I was so worried about getting things done. Now, in the “after” time, our lives are again on the crazy side. My goal, though, is to live in the crazy but not to be crazy. I want to be better about interacting with others with thoughtfulness and intention, and to try to be to other people what so many people were to us. Every life has stuff, to put it nicely. Let’s get each other through the stuff. Let’s allow ourselves be seen in our fear and our need and our embarrassment and our shame. It’s hard, but it’s got to be easier than getting through the stuff alone.
A few weeks ago Embree told me she wanted to start taking dance lessons again. She hadn’t taken them since she was sick. She got into a class mid-year and is preparing for the upcoming recital. Last week her teacher invited her to be in her elite “company” for next year. She gets a special warm-up suit with her name on it. We’ll keep dancing, but now she’s dancing for a much bigger audience, an audience of people who were willing to make her story a part of their own story. I better buy a lot of recital tickets.
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