SIBLING STORIES

We asked children, teens and adults who have (or had) a sibling with a serious illness or disability how it affected them in order to find out more about what types of issues they grappled with. Here are some of their stories…

11 year old Maddie writes, “I don’t think it is fair. Why does my sister have to be sick with cancer? I wish there was no such thing as cancer.” She continues, “I have to be extra careful with germs. I have to stay at my Grandparent’s a lot and can’t go some places that might expose my sister to infection. It is hard to plan things when you don’t know how she will be.”

Brian writes, “My younger brother has had epilepsy. He has had it for nearly all of his life, and the disease is growing worse. We spend a lot of time at the hospital. I am not able to do sports or many extracurricular activities. My parents are constantly tired and my family doesn’t go out and do things very often.”

“Suzie” is between 6-10 and has a sibling who has a serious illness. She writes, “I adore my sister and love to give her hugs, but there are no hugs or words in return from her. My parents argue more, sometimes they get to visit her and I don’t. I don’t have to share my room with her now. My parents talk about where she is going to live and how much money we’ll need. I worry about costing my parents too much…”

Rosalie Frankel, MA, ATR, is the Therapuetic Play Coordinator at Children’s Hospital. She wrote to tell us why she felt this project was so necessary and important, “A mother asked for some art supplies. So, I went with her to meet her child and figure out what he might want to do. When I went up to him, he was sitting next to a wheelchair. I asked him if it was his and he said, ‘No…I’m only the brother.’ I think he thought that I would walk away because he wasn’t the patient. Instead I said, ‘Well, you’re important too. What would you like to do?’ This inspired an animated show and tell about his favorite superhero as well as drawings with great excitement and detail. We spent some time together and I gave him some additional drawing materials. As I was walking away down the hall, his mother came running after me, sayng ‘I want to thank you.’ I was kind of surprised at the amount of emotion she showed. It seemed like she was thanking me for much more than the usual art therapy visit  – so I asked her ‘For what?’ She said with teary eyes, ‘For telling him he is important too,’ she continuted, ‘It was just what he needed.’ ”

Mandy is in elementary school and has a brother with Aspergers. She writes, “I have to go to the doctor’s a lot, because he never stops getting sick. One day my brother had to go to the hospital because his face was really white. Me and my other brother had such hurting legs from having to walk around in the hospital, since my dad was walking with us in circles, because he didn’t want us to see what was happening with Tommy.”

Lexie is a teen whose brother was diagnosed with ALL Leukemia 5 years ago when she was in the fifth grade. She writes, “My brother was in the hospital most of the time and I usually stayed with my grandparents. I still have a hard time dealing with it. My parents started to argue a lot more during this time. They have been divorced for 4 years now.”

Jennifer is over 22 years old and was 10 when her two-year old brother was diagnosed with a malignant brain tumor. She writes, “It was a tough time for the whole family and I experienced many feelings ranging from fear, frustration, guilt, anger, and hurt. I felt like I disappeared during that time and for a long time after. My family was so focused on him and his illness that there was no time left for me. He eventually recovered and is now very successful, but it was a long road of Doctors, radiation, and hospital visits…”

Debra is 55 years old, but still remembers vividly what it was like when her 16-year old sister was diagnosed with leukemia. Debra was 13 when they got the news. She writes, “It was a very difficult time for our family. I spent a lot of time alone. My mom spent a lot of time with my sister at the hospital, so I didn’t have much supervision – I took advantage of it, of course. I remember liking the freedom, but being scared of it too. I remember resenting that all the focus was on her…” Her sister died three months after her diagnosis.

11-year old Josiah’s sister, Abby, was diagnosed with brain cancer and passed away after a 19 month battle. “Abby’s cancer affected me because when she was in the hospital, my Mom and Dad took turns sleeping with her (in the hospital.) This took away personal time with me and my parents….”

Dara is also over 22 and has a sister that has both a disability and a serious illness. “I don’t have any of these challenges, so sometimes it’s difficult for me to relate to her. Growing up was difficult. We didn’t always have the money for my sister to see the doctor. My folk’s attention was focused on her a lot. I felt alone a lot as a kid. My art helps me express a whole bag full of emotions: anger, frustration, helplessness, and love…”

Julie Marler, a Social Worker and one of the Advisors on the project, wrote to tell us that she and her husband were having dinner with some parents of a three year old who ate the tainted spinach and now has failing kidneys. “She will surely need a transplant by age eleven. Her parents talked about how her older sister has not received much of their attention through the ordeal and how signs of her losses are being expressed. Your books are going to serve so many siblings. Acknowledging their feelings and their experiences will certainly lead to healthier families.”

Carly is a teen with a brother who has autism. She writes, “I live with my brother, my mother and my grandmother. I never get to do the things that other kids do and when I do, they are modified. I wish I could say I went to the park with my babysitter and had a great time. Instead, my brother has a meltdown about something that I usually find a ‘waste of a meltdown on his part’ and we end up having to drag him home. My teachers sometimes let me give speeches to the class about autism during autism awareness month. My aunt always agrees with me that things really aren’t fair for me. I’m all for helping my brother but sometimes it’s nice to hear that things really aren’t fair and that my brother shouldn’t get all of the attention and favoring. It helped a lot when I wrote a letter to my aunt telling her how it felt sometimes like she loved my brother more. She assured me that she loved me just as much and that she’ll try harder to show me that…”