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WHAT IT MEANS TO BE A SIBLING
By Stacia Wagner
Wednesday, February 23, 2011
When a child, adolescent or young adult receives a brain tumor diagnosis the impact is felt by the entire family. While there researchers have started to explore the lifelong psychosocial impact a pediatric brain tumor diagnosis has on parents and survivors, there is limited information on the impact felt by siblings. Siblings may face changes in family roles, unexpressed fears, feelings of abandonment, a renewed closeness with their sibling, and changes in parental expectations. Below are some of the feelings expressed by one sibling. Despite the fact it has been nine years since her brother’s first diagnosis, she is still struggling with a variety of positive and negative feelings.
“I've recently been thinking a lot about what it means to be the sibling of a brain tumor survivor, how it's changed my life, and set me apart from those around me. …And, while I have come a long way, I still sit here in college and feel ultimately different from my friends, who have little to no awareness of their own mortality and that of people our age, when I have an acute awareness of it. …When my brother had his first tumor, I couldn't think of anything BUT the fact that it could happen to him again, it could happen to me, and it could happen to anyone our age-- no one was safe anymore in my eyes. My parents never knew how hard it was for me growing up because I strived to hide it from them, until I couldn't anymore. What sibling wants their parent to have to deal with their fear and anxiety on top of a sick child? Secretly at night from the time I was 11 until I was probably 16 or even 17, I would touch my finger to my nose "just to check". And every time anyone said they had a headache or were dizzy, I would shrug it off like everyone else and so "oh you must be coming down with something", but in reality my head would swirl with the same terrible thoughts…..
I didn't feel like my brother's baby sister often, when we went to camp together, I watched him like a hawk. I acted like an older sister, and at times like a mother, and of course he didn't like it. But that's the thing, siblings don't really know what to think, how to act, and what's normal. And it's scary. There is so much out there for patients and for their parents, but siblings go all but forgotten in most cases. We're the healthy ones-- sure, but we're also the guilt ridden ones, the ones who have to hold it together, the ones who have to bite there tongue-- sibling rivalry?--the most bizarre thing in the world in the family of a tumor survivor.
I realize now, that my childhood was different. Despite how blessed I am to have a family who made sure I never went without attention, they couldn't stop the thoughts running through my mind, and they couldn't have known, or dealt with that. … And yet, the thing is-- it doesn't matter how well off your sibling is. Once it happens, it happens. Of course I couldn't be prouder.... but I also couldn't be more afraid of whether or not he will finally get the uninterrupted chance to pursue his dreams. Sometimes, being a sibling, is like waiting for the other shoe to drop.
…… despite the fact that I believe it's something I will always carry with me; I am living my own life away from home, getting good grades, making friends, in a positive relationship with a wonderful and understanding boy. I am still scared, and I always will be a little, but I actually think it's had a positive effect on who I am today, and who my family is…… “
Thank you Dina for your willingness to openly share how your brother’s brain tumor diagnosis has impacted your life. If you are a sibling, survivor or parent, please share your thoughts about the changes it had on your family.