Living After Loss

At 29 years old, Silas had his life cut short. What he thought was a pinched nerve had turned out to be stage 4 lung cancer, and he underwent two surgeries, chemotherapy and radiation. After an eight-month fight, Silas died of the disease.

For his mother, Lorraine, seeing her son in pain was her most difficult experience as a parent. In an interview with CURE®, she shared the challenges of caregiving for her adult son, described where she turned for support and offered advice for other parents.

CURE®: What was the time after Silas’ passing like for you?

Lorraine: I never heard my son ever ask “Why me?” He was so grateful to everyone around him. He kept his humor. I believe his strength helped all of us. He was such a great teacher. While he was sick, I learned to live in the moment with him. I cried and worried and had a lot of anxiety and sadness, but I was also very focused on what he needed, and a lot of energy goes into that, as well as a lot of love, for a parent. If he wanted to go out, we went out. If he wanted takeout food, we ordered it and hoped that he’d still feel like eating.

During the time he was ill, I couldn’t look at the possibility. I was looking at what we could do to get him better and keep him here as long as possible. He was in a lot of pain, and it was moving quickly. When he passed on, I honestly didn’t know how I would survive the first year. I was so heartbroken. I had to go back to work right away. Essentially, I would go to work, I’d come home and shower, then fall into bed until the next morning. But then I realized that he didn’t live to 30, and I wanted a tribute to him. So I started working on getting a local artisan to create a bench in his memory for the school he was going to.

Did you turn to people or group therapy for support?

After the first year — and I learned that broken hearts still beat — I went to my first support group for parents who have lost adult children. That was about six weeks long. From there another woman from that group and I created a peer-to-peer support group. I ran that for about six years.

Then I also worked on creating the nonprofit for young adults with cancer in my son’s memory, Sy’s Fund. My son always thought really big. It’s a national fund, and we fund young adults who are 18 to 39 who have a cancer diagnosis or are dealing with ongoing medical issues. We help fund hobbies, passions and integrative therapies.

What outlets provided a quick break or self-care?

Honestly, as a mom, I felt the biggest self-care was caring for my son. But you have to recognize that you get so rundown. I learned to eat when he did, and when he napped, I would try to sleep a little bit. I had friends and some family members who were supportive, and if I needed to leave the room to make a phone call and cry, I found that helpful. Caring for my son and making sure that he felt surrounded by love was one of the highest forms of self-care.

What was the biggest challenge of being a caregiver?

For me, it was that Silas is my child and I couldn’t take that cancer from him. I had to watch him suffer and know that it was beyond my control as a parent to fix. As parents, once our children are here, there’s that message that we need to protect them and give them everything in our power, and that was taken away from me.

Why did you want to become involved with the With Love, Me campaign?

Having a child receive a cancer diagnosis is, I would imagine, one of the hardest things. I felt that the campaign was an opportunity to perhaps help others who are caregiving for someone with cancer, certainly in hopes that those young adults will survive and get better. Regardless of the outcome, it’s a really hard thing to go through. I really appreciate how the campaign is bringing people together, so they don’t feel so alone. After Silas passed, one of his nurses told me that our family handled things in an incredibly wonderful way — keeping Silas in the forefront. I felt it was such a high compliment, and I felt if I could help others through getting our story out, then it’s a great opportunity.

What advice do you have for a parent who has lost a child?

I would say not to let other people tell you how you’re supposed to grieve. Grieving the loss of a child is very intense and complicated. Find a peer-to-peer support group. If you’re feeling like harming yourself, make sure you get professional help. Surround yourself with supportive people who understand and accept that your life is forever changed. You’re not the person who you were before your child received the diagnosis of cancer. That person is not coming back. But the person who you have become also has a lot to offer.

Is there a message that you have for someone who is living with lung cancer?

For people who are undergoing a diagnosis, don’t be afraid to get a second or third opinion, if necessary, and surround yourself with people you can count on and who can advocate for you. Lung cancer is highly stigmatized, so if there are people coming into your life with negative messages that you don’t have the energy to deal with, remove yourself from that situation. And remember that there are really good researchers out there who are doing the work necessary to increase survival for people with lung cancer. There is hope.