Looking at the world of rare diseases and serious illnesses in children, so much of the focus jumps to the child with the diagnosis, and then to the parents. Usually, this isn’t intentional…it’s just the way it seems to work. Bit by bit, it’s easy for siblings to slip into the sidelines, away from the “front and center” of the attention that comes with a difficult diagnosis.
We have to change the way things look.
I wrote a story years ago about approaching things differently. Sharing it now is different, and when you think about this in the context of siblings, it’s even more meaningful.
Some things are universal.
I used to teach at a school for children with autism, and when I traveled outside of the country, I had the chance to visit an orphanage and school where I was told they were having trouble with a particular child. Throughout the building were babies, toddlers, and children of various ages, many with special needs.
The nurse brought us outside and led a young boy over to me.
“He is five,” she told me. He loves to run. It’s hard to work with him around the other children there. He bangs his head when frustrated, runs through rooms and clears stuff off of the tables, he hits the other children in the face. He only eats porridge, and only responds positively to some adults. She backed away and sat down and I led him over to sit under a tree.
He sat down with me and let me hold him, briefly, fascination captured by the dirt, rocks, and grass. I sprinkled grass down on him, pushed some rocks around, and talked to him quietly, slowly gaining his trust and my own confidence. He picked up a fistful of rocks and put them on a table, lining them up, pushing them around, sorting them into groups, again and again. I began to understand pieces of information about him and tried to push myself, little by little, into his world, marred by physical pain, communication problems, and a struggle for attention and love. He began to look around and started to smile as he let us start to play with him.
I took his hand and began to run with him across the playground. We ran until he tripped and both fell into the grass, him laughing hysterically and clutching my hand.
We left that day, changed. Taking time to step into the world of someone who perceived it so differently allowed me to see the similarities.
Later, I felt something in my pocket. I reached in, pulling out a small rock. Once he began to allow me to play with him, he started to fill my pockets with rocks, and I had forgotten to remove one. I carried that rock with me for the next week as a reminder to step back and think about how we can do things differently, recognizing the gifts we have to share with others.
This child isn’t my brother, and I never saw him after that day. I thought about my relationship with him, and how I could feel so connected, even after a few minutes. How could I do it if he was my brother? How would it feel to watch him take my toys, run around, hit me, and not hear his voice?
Siblings of children with serious illnesses step into a world of learning to connect in different ways. Siblings share a bond beyond blood and genetics, making it possible to see past the challenges and into what they share. Siblings are the ones who can “breakthrough” and interact in ways that teachers, doctors, nurses, and even parents can’t do at times.
Like a rock in your pocket, siblings carry reminders of the burdens of others. And siblings don’t put it down. Siblings carry it through, teaching the rest of us. Siblings are the ones who show us how to make these connections.
Jan. 1 always brings up difficult feelings for me. Even before Sanfilippo syndrome entered our lives, New Year’s was a holiday for reflection — which isn’t necessarily an easy thing to process. Each year, thoughts about what the coming year has in store flood my mind. Read More