When you are used to having a sibling around at home, used to the constant annoying yet loving jokes, teasing and used to their voice echoing through the house, you don’t really realize what it’s like not to have them around. Ever since about two weeks ago, Clay has been in the hospital and is just now moving onto a rehabilitation hospital. It has been extremely difficult to understand why a little kid like him has to fight so hard to feel like any normal person should, to feel better and 100%. Everyone should be given the ability to feel like that all the time, but for him, he has to really fight for it. That’s something that I find hard to imagine most days. Since those two weeks that Clay has been gone, the house has been very quiet, completely void of his sweet little voice and laugh until we get call from him on the phone. It’s different. Whenever he calls the two of us joke around about some of his favorite things, like the character Schwaz in the Disney Channel TV show, Henry Danger. I never thought I could miss someone as much as I miss seeing him, especially when coming home from school in the afternoon and going to bed at night. He is a big part of my life, bigger than I thought he was. He makes me who I am, and I honestly don’t know where I would be without him there as an inspiration and a great friend. Even if we do fight sometimes, I love him with all my heart.

In general having a sibling that suffers from Pediatric brain cancer can be very difficult. Sometimes you don’t understand why they get the attention, or why they get things that you are denied and the millions of other little thoughts. After awhile though, you realize that their life is much more difficult than you could ever imagine. They have constant doctors appointments, headaches, feeling sick, hospital visits, and in Clay’s case, not being able to see. When I talk to my friends about my brother, they always listen and are always there for him, but it’s not the same as talking to someone who really understands what I’m going through.

This summer, I attended a one week long summer camp in Leonardtown, Maryland called BRASS camp. BRASS stands for “brothers and sisters” of kids with cancer. This camp is a place where siblings of children struggling from cancer can go for a week, taking a little break from the real world, and entering a little fantasy of happiness, safety and security. You spent every passing second with people who go through your same struggles everyday. We had chat time in our cabins every afternoon, where everyone could talk freely about what was going on at home, and how having a sibling with such a terrible, life threatening disease affected how they went about daily life. Everyone was able to talk without being judged or looked at as different, and were understood and loved by everyone. Even though I didn’t say much during these sessions myself, it was very helpful to know that so many people are going through the same stuff as you. BRASS camp wasn’t centered around only cancer related topics. It was a loving, safe and energetic environment with some of the best people I’ve ever met. The counselors and CIT’s were so understanding and passionate, and they made me smile every single day, no matter what. The activities at camp connected you with so many different people, and you got to do what you loved while spending the time with some very inspiring people. Every single minute I spent laughing at BRASS was a moment to remember. We had campfire every night, where we would sing songs, laugh, shout sayings that only BRASS campers and counselors understood and most of all, connect with some amazing kids and adults. On the last night, we all stood in a circle holding hands, and after listening to our camp leader give us one of the most inspirational speeches I’ve ever heard, we all sung “Swing Low Sweet Chariot.” In that moment, I swear we were all infinite. We knew that we had these people around us to talk to, and that we were not alone in this battle.

 

http://speciallove.org

10 Comments
  • Caroline JH Posted February 17, 2018 12:11 pm

    So proud of you always! I loved what you wrote – thank you for sharing this.

  • Denise M Galleher Posted February 17, 2018 8:29 pm

    What a thoughtful story to help other kids going through the same thing. Clay is lucky to have a sister like you.
    Thinking of you and your family.
    Denise McDowell Galleher
    (UR ’85. Friend of your mom and dad. )

  • Lauren DeLaurentis Brown Posted February 17, 2018 8:32 pm

    Grace- you are a gifted writer! It is obvious you have great love and admiration for Clay. Thank you for sharing these personal reflections so that others may better understand what it is like to be a sibling of a child with cancer. What a wonderful resource your camp was! I hope Clay is able to get home soon. He is lucky to have you in his corner.

  • Diane Posted February 18, 2018 1:44 am

    Grace-How lucky Clay is to have you as his sister. I know it’s tough for everyone but you have really captured the struggle. So glad you were able to meet others in your situation. Hopefully it will give you the strength you need to support your brother during this difficult time and help you through it too! We miss you in Arlington! XXOO Tomb’s

  • Maggie Posted February 18, 2018 3:47 am

    Grace! You forever stand in the light. Admire your strength, respect your true grit, and love the woman you are becoming. Fierce and fabulous rolled into one! Always at your side! Maggie (your biggest fan in your old hood)

  • Sharon Posted February 18, 2018 5:39 pm

    Grace, you are beautiful inside and out! What a thoughtful piece of writing. Thanks for sharing it and for helping others understand that an illness affects the whole family. We hope Clay comes home soon! Sharon

  • Betsy Granville Posted February 20, 2018 2:23 am

    Grace, Thank you for sharing your experience and for being such an inspiration. You are so strong and compassionate, and I know that your love has also helped Clay through tough times like now. Sending big hugs to your whole wonderful family! XO The Granvilles

  • Debi Roeder Posted February 20, 2018 5:30 pm

    Hey Grace…it’s cousin Debi…I’m so glad to see that you’re writing…it helps so much to put your thoughts on paper, doesn’t it? Your Aunt Lisa told me that you’re pretty happy with school in Annapolis and I’m so happy to hear that. There’s no bond quite like the bond between siblings so keep on saving up all those “inside jokes” that only you two can share! Hope to see you at the shore this summer…if not, hope to visit you guys at home! Sending love and hugs xoxoxoxo

  • Linda Bloss-Baum Posted February 22, 2018 3:08 am

    Grace –

    What a beautiful piece. so heartfelt and honest. Your family is lucky to have your strength and outlook on the team.

    “Minute by Minute, That’s How you win it” Seize the Day!

    – The Bloss-Baum Family

  • Maureen Bannon Posted March 30, 2018 10:15 am

    Grace. You are a young lady of Grace
    What a beautiful dialogue you share with us and your writing is like a painting , always a story. Clay is God’s gift to us . I come away blessed every time I see him. He always has a new joke to ease his pain. My prayers always include you each day along with your family. Thank you
    Aunt Maureen

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