The Caregiver

By Amy Lowe

This story is an excerpt from “Hopeful — Grateful — Strong,” a collection of survivor stories from the YMCA of Greater Syracuse’s cancer support programs.

I have always been a caregiver. I took care of my medically fragile parents, in-laws and son, and also my special needs son, my daughter, and my husband Paul. I put myself last because my family needed me.

My oldest son Christopher was diagnosed with cystic fibrosis. He struggled his entire life to breathe. As he got older, the hospital became the place where he spent too much time. The doctors told Chris that he wouldn’t make it to his twenties. This news made him depressed and suicidal.

Paul and I argued with him. “Start fighting for your life! Don’t give up!” We forced him to go to school even when he didn’t see the point. But we also yelled the loudest when he crossed the stage to receive his high school diploma.

Chris started his college career with the goal of graduating before he passed away. On his 21st birthday, he was hospitalized. His college friends showed up and snuck beers past the nurses. It was a horrible way to spend a birthday, but we weren’t sure how many more he’d have.

A couple of years later, Chris moved home. The doctors wanted him to have a double lung transplant, but his condition was too poor to make him a good candidate. As a family we worked to improve his health so that he could be on the transplant list. All of our efforts paid off, and we waited for a match.

“Mom, it’s time. They have a donor.” That was the best phone call I ever got. Chris had a chance at a healthy future, and we were so happy. He’d found a wonderful young woman and was helping to raise her daughter. Paul and I never imagined Chris would have this kind of life. He was also making plans to go back to school and finally earn his degree.

Unfortunately Chris went into full rejection and was no longer a candidate for another transplant.

“It’s time. How soon can you get here?” That was the worst phone call. Paul and I held him until he took his last breath. He passed away one week before his 30th birthday.

My husband and I slowly got our feet back under us. The college that Chris attended posthumously awarded him his degree, which helped us heal.

One year after his death, I’m ready to inter his ashes. Then it happens.

As I stand in the cemetery, I hear my son’s voice. “Mom, stop taking care of me. Take care of yourself.” I’m losing my mind.

“Call the doctor. Take care of yourself.”

It’s been over two years since I’ve seen the doctor. But Chris is in my head, telling me what to do, and I give in. I call my doctor and schedule an appointment right away.

I have a physical exam and a routine mammogram, and the doctors find something: breast cancer. My treatment plan consists of surgery, chemotherapy, radiation and hormonal therapy.

I’m no longer the caregiver — I’m the patient. I struggle with this new role because as the mom I’ve always taken care of those I love, not the other way around. However, I’m getting better about accepting help from my family. I also rely on a wonderful support network at the YMCA and their program for breast cancer survivors, Laurie’s Hope.

I’m still fighting but I know that I will survive. My guardian angel protects me by reminding me what I need to do. Sometimes, the best thing a caregiver can do is put herself first. SWM

For more information on the Syracuse YMCA’s cancer support programs, visit syracuse.ymca.org.

If you wish to purchase a copy of “Hopeful — Grateful — Strong,” contact Jessica DesRosiers at jdesrosiers@syracuseymca.org or (315) 474-6851 ext. 338.

The book was published by the YMCA’s Downtown Writers Center. For more information, visit ycny.org/dwc.html.