‘Clear Path’ Led Lawyer to Charity That Helped Her Cope
June 15, 2006 | Read Time: 7 minutes
When I graduated from college with an English degree in the early 1970s, I didn’t have any big career aspirations. I was engaged at the time, and my husband-to-be was going to law school. I’d also briefly thought about going to law school, but it just wasn’t feasible for us both to go simultaneously.
I ended up working at a book- publishing company in New York. I enjoyed it and discovered I had a head for business.
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After a few years, I went back to school, at the State University of New York at Binghamton, and got my master’s in business administration. Soon after, my husband and I had our first child, Amanda, and a few years later, our second, Elyssa. I spent the next few years being a mom and teaching business classes at a local college. My husband was thriving as a lawyer for IBM. We were your typical young, happy family. Life was good.
But then came January 10, 1985. Amanda and Elyssa were 6 and 3 years old, respectively. They’d both woken up with the flu, but as the day progressed, while Elyssa got better, Amanda got sicker and less responsive. By 4 p.m. I knew something was terribly wrong. I called my husband to meet us at the doctor’s. The doctor took one look at Amanda and sent us immediately to the emergency room.
It turned out that Amanda had a severe brain tumor and she’d almost died that night. It was just the beginning of what would become a year-and-a-half-long nightmare.
Compared with other families dealing with such tragedies, however, we were actually quite lucky. We had lots of friends and family nearby, and we had the resources to pay Amanda’s medical bills.
But at some point it all became too much emotionally. We needed to talk with someone who really understood what we were going through, who could give us practical advice about things like how to talk to our child about what chemotherapy is and why it was making all of her hair fall out. A friend told me about Friends of Karen, an organization that provides emotional, financial, and advocacy support to children with life-threatening illnesses and their families. I gave them a call.
In April 1986, after several rounds of chemotherapy and experimental treatments, it became clear that nothing could cure Amanda. The Friends of Karen staff and volunteers talked with us caringly, but frankly, about how to prepare for our daughter’s impending death, and how to talk with both our kids about what was happening. We could ask them the hard questions and get honest answers without ever feeling judged.
We knew the inevitable was coming, and when it came, we wanted her to be at home. At that time there weren’t any organizations in our area that set up home hospices for children, and we couldn’t find anyone willing to rent us a hospital bed. We spoke to the founder of Friends of Karen, Sheila Petersen; a few hours later, she was on our doorstep with a hospital bed.
Friends of Karen became an integral part of our lives for the next couple of months. I remember during that time Amanda asked me to buy her a doll called “Baby So Real.” I couldn’t find it anywhere, but Sheila somehow found it, and you should have seen Amanda’s face when she brought it to her. It was the ugliest doll I’d ever seen, but Amanda was just thrilled.
Amanda died on June 10, 1986. Friends of Karen was among the first places we called, and volunteers came over that day to help us make phone calls and arrangements for the funeral. Over the next few months, my husband and I attended their monthly bereavement groups.
About three months after Amanda’s death, I went back to work. I got a job as a securities analyst, but it just didn’t interest me, and my mind kept wandering. In order to move on, I felt like I needed to make a major change.
I decided it was time to finally pursue my interest in law. I applied to many schools, but when I got into Harvard, I knew I had to go. Elyssa and I moved to Boston while my husband stayed in New York; we commuted back and forth on weekends. It was hard being separated, but we realize now that it was something we had to do as a family in order to move forward, so that we weren’t living our same old life with this big hole in it.
When I graduated law school in 1990 and moved back to the New York area, I reconnected with Friends of Karen. When I wasn’t working, I volunteered as much as I could. I eventually joined the board of directors and became the charity’s general counsel in a volunteer capacity.
I loved being a lawyer, but I found that over the next 15 years my interests started to focus more on Friends of Karen and less on my day job. With anyone I met, I’d talk about this wonderful charity and what we did.
In April 2005, the organization’s leader retired, and the board asked me if I would be interested in taking the helm. I knew the transition from big-city lawyer to nonprofit leader would be a big challenge, but I wanted to give it a try. My firm gave me a temporary leave of absence, but after four months in this new role, I knew it was the right move. I left my law practice and was permanently appointed executive director last September.
When I look back upon my career, I see a clear path leading me directly to this point. Being a lawyer taught me how to be organized, to be focused, and to be an advocate. It also taught me how to listen to others’ concerns and to be flexible in my thinking.
For instance, when you’re giving an oral argument, you always have a presentation prepared, but if the judge is worrying about something else, you have to pick up on that and address his concerns. Similarly, when I go to speak to potential donors, I listen very carefully to what they say they need in order to feel comfortable giving to us so that I can figure out a way to alleviate their concerns.
My business background also serves me very well here. I am comfortable reading balance sheets and other financial statements, I can create and manage budgets, and know how to write business plans. I’ve discovered that, when you’re running a nonprofit, it definitely helps not to be afraid of numbers.
Perhaps the most important lesson I’ve learned in my life, however, is that there are no guarantees. No matter who you are, what your socioeconomic class is, or how much education you have, no one is protected from the possibility that tragedy will strike. There are 9,500 kids diagnosed with cancer every year, and it is totally random. It just happens, and it can happen to anybody.
This June marks the 20th anniversary of Amanda’s death. It has been a particularly difficult year for me, but I’m so honored to be here.
Knowing firsthand what these families are going through, the idea that I could be doing something to relieve some of their pain and some of the burden that they’re carrying is extremely satisfying. I can’t change what happened to my daughter, but I can make sure that good things happen in her memory.
