As Asa got older (the first few grades of elementary school), more socially aware and more medically stable, dealing with the tracheostomy in some ways became more of a social concern and less of a medical one. She had something that looked different, and she sounded different too. Asa’s peers in class quickly got used to the “trach,” but there was always the first day or week to deal with and she still got a lot of stares in public places, and the occasional rude comment. Once a kid in Asa’s fourth grade class went around saying he had seen Asa’s vocal cords, and once, at a museum, a grown man said to Asa, “You sound like Stephen Hawking.”
On the other hand, we sometimes met other kids and families who were kind and curious, and became friends after striking up that first conversation. Once a kid on the playground said to Asa, “I love your marshmallow necklace!” And one friend of Asa’s, a couple of years younger, told his parents he wanted “a cool necklace like Asa’s.”
Sometimes the comments were confusing or frightening to Asa, such as when one of her kindergarten classmates told her that she would die if her trach tube came out. We changed the trach tube at home regularly and I asked Asa if she remembered when we took out the tube the week before. She did. “Did you die?” I asked. She smiled, and said “No.” We had a lot of conversations about all these comments, which gave Asa the context and clarity she needed to deal with it.
Asa wanted to know why she had this problem that other people didn’t have, and we had a lot of conversations on this theme too. To me, it was essential that we frame these talks in a certain way:
A) Problems are a part of life and everyone has them, even if they don’t show on the outside; and
B) We are extremely lucky and have so much to be grateful for.
Asa always wanted to know what kind of problems other people had and we talked about those things. On the gratitude front, we talked about all the things Asa could do, about everything we had and the people who loved us. I liked to mention that I was grateful for the trach tube itself, because it was a life-saver, and allowed Asa to have a healthy, active life. I hope that all this has served as early lessons in compassion and gratitude for Asa, and resilience too.
Spot 12: Five Months in the Neonatal ICU
Jenny Jaeckel is author of Spot 12: Five Months in the Neonatal ICU, the graphic novel coming out this October about Asa’s infancy. Visit the Spot 12 website for more information or visit the publisher’s website: www.raincloudpress.com. You can preorder the book directly from the distributor here: IPG (in English or Spanish).
Or go to your favorite online retailer to preorder. Spot 12 will also be on the shelf in select bookstores, or have it special ordered.