A fear-coated photo album.
I’m one of three siblings of a child with cancer. Here is a small piece of my story.
There’s a picture my family keeps in a dusty album on a top shelf. I’m not sure who took it, or even the exact date it was taken. It is intentionally hidden from view, to avoid the reminder of what once was. Every now and then, someone in the family will come across it, before promptly returning it to its designated spot on the shelf.
The setting of the photograph is a room in a children’s hospital. The ordinarily bright and happy colors in the room are overshadowed by the sheer number of monitors and medical equipment present. There’s a little girl in the picture, a pink blanket disguising her tiny body. Beside her, a stuffed bear with a stitched grin peers into the camera.
The bear’s smile briefly disguises the context of the picture. This distraction fades quickly though, in lieu of the subject of the photograph. The subject is my little sister, just moments after living through her first brain surgery. The bear, Betty, would go on to be a surgical companion on more occasions than most teddy bears can count- assuming teddy bears can count.
How it started.
I remember my sister’s first surgery. I was barely 12 at the time, but the impact of that experience continues to affect me in my adulthood. The surgery came at a great risk to Andrea’s (my sister) life, due to the location of her brain tumor. We didn’t know if she would live through the surgery, and even if she did, whether or not she would sustain brain damage.
The surgery was ultimately a success. The doctor collected a biopsy without inflicting brain damage. Brief concern of a damaged optic nerve during the procedure was quickly dismissed after Andrea woke and told the ICU nurse her eye color was “Poop Brown.” She never was a morning person.
The result of the biopsy came as a devastating blow to our family. The doctors informed us that Andrea had six months to live, and we should enjoy the time that we had. My family was completely shattered. I was completely shattered.
This marked the beginning of an ongoing journey to save my sister’s life, and in the end we did. During that journey, for me, there was only one goal in mind. Save Andrea. We accomplished that goal, but after it all ended something inside of me still felt awry.
Learning how to let go of the narrative I was given.
I realized that in spite of my delight over my sister’s remarkable recovery, I’d somehow lost myself along the way. It took me years and a great therapist to finally ask the question, “What about me?” How did this affect me? I immediately felt guilty for even thinking about it.
I felt disgusted with myself. How could I be so selfish? I didn’t have cancer. There was no chemo, radiation or surgeries for me. I didn’t have to go through anything comparable to what she did. I felt as though acknowledging my pain somehow diminished the experience of my sister. Additionally, I felt like recognizing what I went through might make her feel guilty. I conveyed this to my therapist and I’ll never forget what she said, “Why can’t your pain, and her pain, coexist?”
That sentence changed my life. I finally understood that acknowledging how the experience hurt me did not diminish my sister’s experience. Recognizing how I suffered did not mean inflicting guilt upon my sister, either. Guilt for what? Having cancer? Something she has no control of? We went through something really difficult.
The need for acknowledgement of pain.
It became clear to me that by not acknowledging our experiences, we were just giving them more power to do harm. Like the photograph on the top shelf. It’s just a picture, why do we allow it to harm us? I now understand that when we recognize and observe our own pain, we take away the power that it has over us.
Pain doesn’t have to be one sided, it can coexist. When you are going through something as difficult as cancer with someone, it’s okay to acknowledge that you’re hurting too. The lives of everyone involved are going to change, and it’s appropriate to admit that the circumstance is difficult for you.
In the midst of Andrea’s treatments, I felt I wasn’t allowed to express how I was feeling. So many people kept telling me, “Be strong. You have to be strong for her sake.” But I was hurting too. As an adult, I can now look back and recognize that I was just a child in a difficult and confusing world.
“I’m just a kid and life is a nightmare.” -Simple Plan
All of this happened when I was just a kid. Cancer stole my sister’s youth, as well as mine. I had to grow up so fast, and learn very difficult lessons at an early age, and I’m not alone. So many siblings of children with cancer go through this every day.
From the outside looking in, it can be difficult to understand what a sibling is going through. But siblings of a child with cancer are experiencing profound change and grief during crucial developing years. It is so important to acknowledge them, and other family members during that time.
So often when I was a child people would ask, “How is your sister? How is your mom?” Rarely did someone ask me how I was doing. I’m not resentful (Click here for My Thank You to Cancer) of this fact at all, I understand why it happened that way. But I want children going through what myself and my brothers went through to know that they matter. Their lives are just as important as the lives of their unwell sibling.
SuperSibs! and learning to be comfortable when you’re not okay.
There’s an organization called SuperSibs!. Supersibs! dedicates themselves to helping the siblings of a child with cancer feel loved and included. If you want to donate to a good cause, they are a phenomenal organization. My brother and I received personalized gifts each month from them, and it made us feel loved and special at a time when we may not have.
Something I would say to siblings of a child with cancer is this. You are allowed to grieve the loss of your childhood. It’s okay to be sad when you lose friends due to your sibling’s illness or treatments. You can be angry at God or the Universe for a while. It’s okay to be scared.. You’re going to be anxious, and that’s okay. It’s okay to be depressed every now and then.
You can be sad when your parents and other family members don’t have time for you. You know that they’re doing the best they can, and so do they. But it’s okay to be sad about it. It’s okay to not be okay today. You just have to have hope someday.
