By Holly Kearl, rewritten for Ostomy Canada and sourced by Lisa Gausman, Senior Editor.
My four-year-old son has five health conditions1, including imperforate anus (being born without an anus). He also has epilepsy, and a condition with the acronym VACTERL because, in addition to an imperforate anus, he has only one kidney and a tethered spinal cord. His body is so unique that there may only be a handful of people in the world with his exact combination.
So when he turned to me one day and said, “I wish you had an ostomy bag too,” I could hear in his wish how alone he felt.
I didn’t want him to feel alone, so I went into our bathroom, where I pile stacks of medical supplies. I took out an ostomy bag, which is similar in size to a sandwich baggie and into which his stool is excreted through a hole in his abdomen, and taped it to my stomach. I thought, hey, friends and family of people losing their hair due to chemotherapy shave their heads in solidarity; so if it helps him, I will wear an ostomy bag every day.
When he saw the bag on me, he excitedly asked: “Wait, you have an ostomy bag too? You will poop there too?”
I didn’t want to lie or discount the major surgery his small body had endured to create his stoma. I said: “No, baby, I taped mine on, see? But I will do this if it helps you feel less alone.”
Crestfallen, he said no, he didn’t want me to tape one on. And then I felt foolish for thinking that doing so would be helpful for him. While his dad and I do everything we can to care for him, advocate for him, and help him live a full life, our bodies are different from his, and they always will be.
There’s no doubt that many children with disabilities feel alone or noticeably different every day. They may be the only person with disabilities in their family, their neighborhood or their school. While the Centers for Disease Control and Prevention says up to 27% of U.S. adults have a disability, the Census Bureau reports that only 4.3% of children have one. The most common type among children are cognitive disabilities, which my son does not have.
Additionally, most children will see very little representation of disabilities in the world. For instance, a 2022 study found that in the previous year there were no lead characters with disabilities in popular programming for children ages 2 to 11. Among notable supporting characters, 0.5% had a disability.
Most toys and books for children do not depict or incorporate disabilities, though there are a growing number of people working to change this. For instance, here are 11 toys that incorporate disability and 20 books about disability.
We need more content and toys like this so that children with disabilities see themselves, and so that all kids can better understand, appreciate and accept the range of bodies in our world.
In the meantime, while I can’t make people who have the same disabilities as my son appear in person or in the shows he watches or the books he reads, I can work harder to help him feel seen and understood. I never want to ignore or hide his disabilities, as they are part of who he is and he should never feel ashamed about them.
For instance, during this past preschool year, my son said to me a few times that he wished his friends understood his body. A therapist we’d taken him to told us that it was important to let him talk about his surgeries, medical experiences and physical differences to help him address and process his medical traumas. So I asked my son if he’d like me to ask his teachers about doing a presentation to his class to help them understand him more, and he said yes. His teachers agreed.
One January day, I stayed after preschool drop-off and joined his class for circle time. He and I sat in the front, and I talked about how bodies can be different; people have different eye colors, skin colors, hair textures and heights. We explained how some people use sign language, wear glasses or use wheelchairs.
Then I told the class that my son was different in how he goes to the bathroom. Using a special doll that he was given at the hospital after his ostomy surgery the year before, I showed them where an ostomy bag goes and how it works. My son happily passed around catheters; he also has a neurogenic bladder, and we use catheters to empty his bladder every three to four hours, as well as ostomy bags for his friends to examine.
The kids listened intently to everything we said. Several children nodded when I talked about how all bodies are different, and they all carefully examined the medical supplies. Near the end, when I asked my son if he had anything else to add, he whispered that he “goes to the doctor a lot.” I repeated louder what he had said and asked his classmates if they had ever been to the doctor. This was something to which they could relate, and they were full of stories about their experiences at the doctor’s office.
When I arrived back at my son’s preschool class after lunch to do his midday catheter and ostomy bag care, I asked how he felt after telling his friends about his body. “I loved doing it,” he said. “I’m happy that my friends got to see how I work.”
I wrote this piece three years ago for HuffPost Personal2. My son is now seven-years-old, and we continue to give a talk with his friends at the start of each school year to explain his disabilities, including an epilepsy diagnosis he received as he neared his fifth birthday. He appreciates the chance to talk about a big part of his life. It also helps his friends understand and normalize why I appear at noon at school and take him to the bathroom. This year, a child in his class has selective mutism and doesn’t talk in class. Because our talk went over so well, her mom came and read a book and talked to her class about her disability, too.
Twice a year, my son and I put together care baskets for NICU babies with imperforate anus at Children’s National Hospital in Washington, D.C. through a program run by the Pull-Thru Network. He loves doing this project, knowing he’s helping babies who were born like him and it’s another chance for him to talk about his body as we pull together the materials.
It’s important to talk openly about our differences. It’s up to the adults in the lives of children with disabilities to help them feel seen, accepted and loved.
Holly and Easton live in Virginia.
This story was sourced by Lisa Gausman, Ostomy Canada Senior Editor.
- We learned our child also has a condition with the acronym VACTERL because, in addition to an Imperforate anus, he has only one kidney and a then-undetermined spine abnormality. Eight months later, an MRI would show that he had a tethered spinal cord. ↩︎
- Read the original article published in the Huffpost. ↩︎