Then I heard a voice–maybe my own–say “what kind of person do you want to be? Do you want to be the person that can deal with this? Or do you want to be the person who [can’t]?” I decided I wanted to be the person who could.

alexandmomHow would I describe myself before having children? I was really pretty laid back, and I didn’t worry about much.  I always felt like things would work out.

My husband and I always knew we would have a family. We ended up having four children. Our oldest is 18, Alex would have been 17 this year—she died when she was 8–, and then we have a 14 and a 10 year old.

What surprised me? You always know you’re going to love your children, but the intensity of that feeling was beyond anything I could have imagined. You can’t know the lengths to which you’ll go [for a child].

There was a moment… Alex had just been diagnosed with neuroblastoma the day before. She had been in surgery all day to remove tumors. We didn’t really know what her prognosis was at that point, but we knew she had cancer. Then we were told that during the surgery she had had a complication and was paralyzed from the chest down. She was in the ICU.

People were calling and people were showing up. I thought, “I cannot take a phone call. I cannot go out there. I cannot go see her. I don’t think I can do this.” And then, it just struck me. I had volunteered for a leukemia telethon before I had children, and I remember seeing the families who came with their kids and how they handled themselves, and how happy they were and I remember admiring them.

It was in that moment, I heard a voice–maybe my own–say “what kind of person do you want to be? Do you want to be the person that can deal with this and move forward? Or do you want to be the person who stays in this room, curled up, and not deal with it?” I decided I wanted to be the person who could deal with it… for my kids and for myself… It was really important to realize that I had a choice.

How did we manage during those years? We just followed our instincts. I had always been somebody who took things as they came. The support of our family and friends was huge for us. And then my kids were little. They wanted to play. They weren’t thinking, “oh no, what’s going to happen next month or next year?” We followed their lead.

What have I learned about myself? I can’t tell you how many times people said, “I don’t know how you did it.” But you just do. This situation requires you to be strong. It requires you to think about things you don’t want to think about and do things you don’t want to do. I learned what I could handle by simply doing it. I also learned that sometimes it’s OK to not feel able to handle it. But ultimately, I’d have to say to myself, “I feel like I can’t do this, but I have to do this. My kids are depending on me.” It wasn’t an option to not be strong and keep that smile on and keep moving forward with the hope that she would be cured or at least that we would just have a really good day.

The vast majority of parents I’ve met would tell you the exact same thing. I was inspired by all of the parents we met. We looked to each other. There was always somebody who had it worse than you. You’d think, if they can do this, I can do this. I was talking to a mom a few years after Alex died, and she said, “you were such an inspiration to me. I felt so sorry for myself and for my daughter, and then I would look at you, and see how sick Alex was and see you with another baby while Alex was so sick and think what do I have to complain about?” My reaction was “I was that person? Really?” As much as we hated going to the hospital, I can’t imagine treatment in isolation. How lonely you would feel. In the hospital, you would see those other families who were going through the same thing…and you would realize you could do it.

When Alex was four, she had the simple idea of selling lemonade to cure childhood cancer. While she was alive, she really inspired a lot of people to get involved. A few months after she died, we realized we needed to do something to honor what she had started. Other people were continuing it without us asking. It was a moment where we thought—again—we have this choice. We could really take it on and do it in the best way we possibly could. Or not. We decided we would. We have been very fortunate. So many people have given their talent and time to bring it to where it is today. It has been such a gift. We meet so many kids like Alex. When we lose another child to cancer, it kind of takes you right back. You know? It makes you realize that there’s still a lot more to be done. It pushes us. We’ve raised over sixty million dollars for childhood cancer. That’s Alex’s legacy.

How have I been changed by motherhood? I definitely appreciate everything more than I did… good health, family time, what really matters in life. Through our experiences with Alex, you realize that all of that stuff that we worry about, and I’m guilty of it too, believe me, the everyday stuff –you realize that there are so many great things in your life to be happy for. I appreciate my kids every single day. I really, really do. I’m glad, as hard as it has been to learn that lesson, as much as I would give to take it back and never have learned it so intensely, I’m very grateful to understand that.

I feel weird when people hold me up as an example, because I’m really just a mom like everyone else. I’ve just been learning as I go — like anybody else. And believe me, I make lots of mistakes. I’m just like everybody else.

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