As a child, one’s sibling can be the compass in friendship, laughter, sharing, compassion and wisdom. This is not to say that life is always “peachy” with siblings. It is far from it. The sibling bond is unique; and its life lessons carry into adulthood. But for a child who has a sibling with a chronic illness or life-altering disability, their role is dramatically different.
This role has many concerns and anxieties. Regarding themselves, many have learned how to put others first. They worry about their sibling who is ill; what will happen to them, what caused the illness, their feelings, future and services needed.
They worry about their parents; their expectations, lack of time, how they are feeling, how to help them, and how to help take care of their sibling. They worry about their own health and feelings, their sibling relationship, and issues at school. They have concerns about their friends: how to tell them what’s going on, acceptance, teasing and isolation. These concerns are important; and need to be acknowledged along with the fears and anxiety of not knowing what will happen to their sibling.
Adulthood has its concerns as well. Who will take care of their sibling when their parents are gone? Many have acknowledged and accepted that they will be the future caretakers. Many are struggling with the idea. Experiencing their sibling’s suffering, or even intense trauma, are very traumatic events that are now a major part of their lives, and creates another realm of anxieties together. Siblings such as these need a shoulder to lean on.
I was such a sibling once upon a time. My sister, Cassie, was diagnosed with leukemia in 1994. We were 19 months apart, and had a very close bond. We argued and fought just as much as other siblings, but apologized quickly; so we could move on to the next game of hide and seek, bike riding or whispered conversations with flashlights, under a sheet draped over the dining room chairs.
We shared our hopes and dreams, as well as our fears and wonders … perhaps everything but our toothbrushes. My anxiety for her well-being washed over me in waves, day after day; and witnessing her suffer changed me dramatically. Her last weeks in the hospital, including time in the ICU, were harrowing. And when she died in 1997, my heart broke. My family’s heart broke.
In 1995 and 1996, we attended Camp Sanguinity, held at Camp John Marc. This was a week-long summer camp for children with cancer and their siblings. It was there that I learned the value of compassion, kindness and power of play.
I came back to volunteer in 2002, and never left! Several years later, my friend, Karen Gilmore, told me about a sibling support program called Sibshops. That same year, I met Kat Davitt, a Child Life specialist and friend, who was instrumental in helping me start a Sibshop at Cook Children’s.
We believe that by providing a chance for children to meet other siblings in similar circumstances, forget their troubles or discuss them, and acknowledge them for who they are, we can make a difference.
The Cook Children’s Workshop services siblings of children who are or have been patients at Cook Children’s Medical Center and live with a chronic illness or life-changing disability. These include: Cardiology, Nephrology, Neurology and Oncology.
The Cook Children’s Sibshop provides a safe environment to:
• Meet other siblings
• Discuss common concerns
• Learn coping techniques related to their situations
• Have fun
I never expected my future to include support for siblings. Nor did I expect to have such a role and relationship to the same hospital that held so many terrible memories. But for me, they are two different places. The hospital was the place where those events took place. And Cook Children’s is the foundation of compassion, hope and the opportunity to give.
One of the many lessons I learned from my sister’s death is this: I will never know “why.” But finding my own answer is entirely up to me.