(The article below is written by former NTSAD Intern Rebecca Ratner. I had the pleasure of sitting in on her sibling workshop when I attended the conference in March, and I was moved beyond words by what I experienced. Here is a small glimpse into the lives of children living with a brother or sister with a rare disease. -SG)
Rebecca and her sister Ilana, who passed away from Canavan Disease in 1995
This past weekend, at the Hilton Bayfront in St, Petersburg, Florida, eleven kids sat around in a circle and talked about their siblings. Each one had a story to tell. Each one had fears and hopes and dreams for their brother or sister. Each one had a sibling who was either sick or had passed away from a genetic disease.
These eleven kids were participants in the Sibling Workshop that I ran at the NTSAD family conference. My goal was to provide a safe space for these siblings to express themselves and share stories and insights into what its like to have a sibling with a genetic disease. Through play therapy and discussions, each sibling had a chance to tell their story and how they cope with having a sick brother or sister, or what it’s like to have a brother or sister who has passed away.
We started the workshop by making a web, throwing a ball of yarn to each sibling and asking them what their favorite ice cream flavor was. By the end of the game, each kid was holding a piece of a giant web. I explained how even though we were all very different, and that everything from where we came from to our tastes in ice cream were unique and special, we were all connected by a common thread. We were at the NTSAD family conference and we had siblings who were affected by genetic diseases.
The next part of the workshop involved the kids running from one side of the room to the other if they agreed with a statement that I read. Some of the statements were about having a brother or sister affected by a genetic disease, and others were about being a sibling in a general sense. The kids were able to open up about their fears, their concerns, and what makes their brother or sister special. We also talked about some of the common issues that arise when having a sibling who needs so much care and attention. The kids gave each other advice on issues ranging from what to do when their friends come over and ask questions about their brother or sister to how to let their parents know that they want some attention and time together too.
The last activity of the workshop was decorating pillowcases with dreams or goals that they have for either themselves or their siblings. One boy drew a picture of himself becoming a doctor and curing Sandhoff Disease; a girl drew herself becoming a famous gymnast. Someone else drew herself riding horses and winning competitions, and another drew his sibling healthy and well because a cure was found.
The workshop ended with lots of hugs and proud smiles for what they had accomplished, and I was incredibly impressed by the way these kids opened up and shared huge parts of themselves. They were able to truly express how they felt about having a brother or sister with a genetic disease and interact with other kids going through the same things.
The NTSAD family conference is a way for parents, grandparents, extended family, and caregivers of children affected by genetic diseases to come together. It is a community of people who understand – who truly get it. I wanted to provide that same sense of comfort to the siblings in my workshop and give them the confidence that they are not alone.
As the kids were leaving, I asked the eleven participants to raise their hands if they thought that knowing another sibling who had a sister or brother with a genetic disease was helpful and if it made them feel better. Eleven hands quickly went up in the air.
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Hearing the stories of these angels brought tears to my eyes. They’re often forced to be so mature at such a young age, and it’s just amazing to see how strong they truly are.
That made me cry.
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