In the spring of 2010, when Asa was five, we made plans to relocate from Vancouver to the town of Duncan on Vancouver Island, where some friends of ours had moved the year before, and where we hoped to find more affordable housing, a quieter, greener life, and maybe a more cohesive community. Asa’s health was stable enough now for us to be away from the big hospital in Vancouver, and to be in the vicinity of Victoria General, about an hour away from us on the Island.
With Asa about to start kindergarten, and with nights getting easier all the time, we switched from night nursing hours to daytime, so a nurse could be present with Asa at school. Asa now only needed suctioning when she was sick, so the role of the nurse at school was mostly to look out for any safety or infection hazards around the tracheostomy, and to handle any (unlikely) occasions when the tube might become dislodged. This left the nurses a lot of free time to help the teacher prepare materials for the class and help out with the other kids.
Chris and I wondered how things would go socially for Asa at school, having a noticeable visual difference, and also a voice and manner of speaking that were somewhat different because of the trach tube. So far, most kids, we noticed, were curious at first, but once they heard it was “a little tube to help her breathe” seemed to forget about it. There was the occasional rude comment or stare –including from adults– or kid who was freaked out by it, but most of the time there wasn’t an issue. We also had to see how more germ exposure would go for Asa.
As it turned out things went fine. Asa didn’t get sick any more often than her peers, and she began making friends, though she connected better in one on one situations rather than in the group. The kindergarten class was a lively place, a little on the loud and chaotic side, and at recess Asa seemed to prefer the monkey bars to socializing. She mastered the monkey bars that year, and, as the school was a French immersion school (yay Canada!) began learning French.
The big theme for me that year was that for the first time since Asa’s birth I had some regular time alone. Being an introvert with a big need for solitude, I pretty much spent Asa’s first five years clinging to sanity by the skin of my fingernails. Asa had never been without either Chris or I during the first five years after the NICU, except when we had a night nurse. Even when we had our playschool I had to be there. After relocating to the Island, life in a new town meant working deliberately on meeting people and making connections, but the hours when Asa was at school became a refuge. In fact, I was so desperate for time to myself that if I accidentally talked to someone in those hours I considered it a waste of time. Eventually I found work I could do at home–sewing dolls for a local company. Over time, as Asa’s care became less intensive, and with these quiet hours in my week, I thankfully began to not just survive, but live.
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.