Close to two years ago in the fourth grade, Asa, my then exclusively-boy’s-clothes-wearing daughter, heard the term “gender-neutral” in a class discussion on gender. This term really resonated with Asa, who by this time was not feeling like a boy or a girl, but something like both, neither, or in-between. Asa wanted to “re-identify,” wanted us to start using gender-neutral pronouns, and did not want Chris (my husband) or I to use the word “daughter.” For Chris and I, no problem! We are very clear it’s our job to help Asa be Asa, whoever that is. We also know Asa to be a person who is dedicated to their values, and who sticks to decisions. Clearly this wasn’t just a whim. So we looked up some gender-neutral pronouns on the internet and started practicing using them.
Fast forward to the 6th grade: Asa’s teacher, who is wonderfully supportive, loaned us a book of short stories by an author from Vancouver who identifies as a “trans person.” This author has gotten the question “Are you a man or a woman?” so many times they wrote a story about it. Asa and I read the story together and discussed different ways to respond to the question “Are you a boy or a girl?” Soon after that talk, a boy at school asked Asa The Question and Asa told me about the interaction after school. Asa was pleased with the conversation, and we both thought it was comic material. Here’s what we came up with.
For those of you who have been reading my posts about Asa because you were wondering what happened to them after Spot 12, we are now officially caught up to the present! I am posting this with Asa’s permission, and as they allow, I will post from time to time on the journey of parenting. Thanks everyone for tuning into my blog. Have a great Turkey Day!
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.
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.
Our daughter Asa needed a tracheotomy (trach) and a feeding tube as a very young infant. These were great tools that allowed her to grow older, but they created whole new challenges for my husband and I to face.
Getting Asa to do all her eating and drinking orally was a long process. She missed the window in early infancy when a baby connects the feeling of hunger to eating because during all her surgeries and respiratory intubation she was fed by tube. Then for a very long time she didn’t experience much hunger because we were constantly feeding her small amounts so she could keep it down–barf management. When we started giving her solid foods at one year old we made purees and put them in the G-tube with big syringes. Technically we weren’t supposed to put solids in the G-tube, only formula, but since we thought real food was much better that’s what we did, without problems. We did end up with food on the ceiling when the syringes slipped, but that didn’t pose any health risks.
Asa’s early eating was all little tastes. We had been advised to make her experience of eating as positive as possible, so we made a point of having fun with food and avoiding power struggles. One of the first things she ate of her own choosing was a tortilla chip that she snatched out of Chris’ hand one day at the park. She didn’t have teeth yet but managed to get it down.
She had a bad stomach flu at about 18 months old, cause for another ER visit. The flu lasted two weeks and she lost a lot of weight. Her legs shrunk down to two little sticks. But once she was better she got very hungry, so she really made the connection between hunger and eating. All day she ran over to the refrigerator making the “eat” sign, and soon enough she gained back the weight.
When Asa was almost three she had been eating and drinking exclusively by mouth for several months and we were at last able to take out the G-tube. She had a surgery to close the stoma (the surgically made hole between stomach and outside her body). The doctors did another scope of her trachea at the same time as the surgery and saw no improvement. The ENT doctor consulted with colleagues in Cincinnati, the “airway capital of North America,” and told us there were just a handful of kids on the continent with Asa’s particular picture. Some of the kids grew out of the condition, ie. grew more cartilage on their own, and some did not. There was no way to know for Asa.
However, by this time Asa’s health was generally more stable and we could do more activities and be around other kids more often. When Asa was three, four and five, we took kids’ classes at the local community center –yoga, dance, art, Spanish Mother Goose– spent tons of time at the library, and we also started a playgroup. Asa was ready for some regular peers, but a regular preschool would be far too much germ exposure. My friend Teresa and I organized a group with two other families, pooled our resources and hired a teacher two mornings a week, meeting at each house on a rotating basis. The first teacher we had didn’t work out super well, but the second one we found, Jessica, was amazing. Teresa and I liked her so much we were high-fiving each other during her interview. The kids had a great time and learned all kinds of things through their activities.
Along with more peers Asa also had some imaginary friends and pets, also an imaginary brother and second set of parents. Asa’s “other mom” was called Annie. Annie gave her candy and showed her how to put on makeup, and once Asa told me Annie helped her even more than I did. I said that must be a LOT.
A big feature of Asa’s toddlerhood was sign language. She had a scope of her trachea at age one, with zero sign of improvement, and as such we didn’t know when she would be able to talk. In order for Asa to use her voice there would have to be enough air bypassing her tracheostomy tube and going through her vocal cords to make sound. So far we didn’t have that. We could hear her breathing through the tracheotomy tube, coughing and sneezing, and the way her breathing changed when she cried, but no voice. I wanted to be sure Asa’s language development would be on par with her age, and of course we wanted her to be able to communicate, so we got some books on baby sign language from the library and started working on our vocabulary.
Pretty quickly we ran out of baby signs, and found that most standard signs were too complicated for Asa to make, so we started inventing. In our case it didn’t matter that the language we were inventing was wholly idiosyncratic. We figured it was all temporary. Asa could hear and this was a stop-gap measure to use until she could speak in the usual way. By the time she between a year and a half Asa knew about 300 signs. We were pretty proud of this and didn’t mind bragging to friends about it once in awhile. But much more important for us was that it was a constant window into Asa’s mind, and she had a lot to say.
Once we went into a doctor’s office and there was music playing in the waiting area. I had scarcely noticed the music, but Asa did the sign for “piano”. It actually was piano music. Another time, at the hospital, she noticed the color grey on the floor and did the sign “grey”. Before long she could put together simple sentences. She might say “Park. Yesterday. Story.” This meant she wanted to hear the story of what happened at the park yesterday. Just because she was there didn’t mean she didn’t want to the story, in fact, Asa’s favorite stories were about things that had happened and she was trying to make sense of. The sign for “story” became useful in meaning “explain, please”. Once we were crossing the street in our neighborhood and an elderly Chinese neighbor looked at Asa and exclaimed, “Aaaaaaahhhhhh!” This was a cultural way of saying, very kindly, “oh, what a lovely child!” that Asa had not heard before. After we passed she looked at me and signed “Story!”
We also learned that certain jokes were possible with signs that weren’t possible just with regular words. Once Chris and Asa and I went for a walk and when we got to the corner, after leaving our house, we realized we forgot the suction machine. Chris turned back to get it and Asa and I waited on the corner. She was having a snack and was not paying attention when Chris left, so a minute or two later she noticed and signed “Where’s Daddy?” The sign for Daddy involved an open hand and touching thumb to forehead two times, but because of her snack Asa signed “Where’s crackers on my head?” Which we all thought was hilarious and retold the story of many times, and for years to come.
Chris’ dad is called “Pop Pop” by all his ten grandchildren. Once when he came to visit from Philadelphia we made a tape recording of him reading stories to Asa, that she listened to countless times after he left for home. One day Chris told me Asa signed “Asa wants Pop Pop talking, please thank you Daddy” which meant she wanted to hear the tape. We also got extra use out of the sign for Pop Pop because we used it for “papas” the Spanish for potato. By then I was also talking to Asa in Spanish. Asa made up a few of her own uses for signs. We had a sign for “beach” and she decided to use it also for the food “beets”, and we had a sign for “chicken” and she decided to use it to also mean “kitchen”.
Asa was two and a half by the time she could actually start talking, but once she started she was talking almost overnight. Her voice came out very squeaky and with a lot of effort, but it was talking. After that we used sign language once in awhile to communicate when we had to be quiet, or through the car window and like moments, but pretty soon we dropped it entirely. Life zooms forward and suddenly signing was a tool we didn’t need.
Readers of my book Spot 12: Five Months in the Neonatal ICU have told me they want more. They want to hear what happened to Asa next, and how our family continued to grow, learn and survive. So this summer I’m putting together some posts to fill this request. Here is the first installment.
Things got so much better once we were able to leave the hospital, but it wasn’t easy. We did our best to manage the chaos, discover how to live in the outside world with Asa and all she required, weather the crises that arose, and generally survive the stress that was through the roof on a daily basis. The business of feeding Asa and maintaining an open airway was non-stop, messy and often scary, but we could go on walks, to parks, and eventually friends’ houses and other places. For the first year and a half any kind of group activity was impossible, and even the library was barely doable. The suction machine was loud, the supplies were cumbersome, the looks from strangers were withering, and Asa’s puking was spectacular.
Let’s talk about the puking. The coughing and suctioning because of the trach triggered Asa’s gag reflex, and combined with her compromised esophagus she puked the full contents of her stomach several times a day. I was still pumping and we tube-fed her breast milk exclusively for her first year. We went home from the hospital with an elaborate tube feeding pump that we quickly abandoned in favor of using syringes to put milk in the tube. Since Asa had so much difficulty keeping anything down, we eventually were feeding her very small amounts every half hour. I often felt that it would save a tremendous amount of cleaning and laundry if I just dumped the milk I pumped straight into the washer. Once at a hospital visit Asa puked on my shirt and on my pants in such a way that it appeared that I had puked on myself and also wet my pants. We were in a public area and we had to wait for 20 minutes like that for Chris to pick us up. Another time we stopped into our neighborhood Ethiopian restaurant for takeout and Asa puked gallons all over their floor. Another time Chris took her to the grocery store and she puked gallons just as he was trying to pay and wrangle the groceries with a whole line of people behind him.
Somehow though, Asa absorbed enough calories to grow and thrive. She was happy. She learned things. She had fun. Somehow we managed to keep her afloat and despite the craziness, she had a good life. We found lots of ways to be creative and find solutions to living within the limits. The fall and winter before her first birthday there were many days when the Vancouver rain was so heavy going out was unthinkable. We had a small one bedroom apartment, and I set up Asa for playtime in different spots –like spending 20 minutes in the bathroom with blocks– and with interludes of going out for interludes in the rain, so that she would feel like the day had variety.
One saving grace was that we got Asa an exer-saucer, having her upright was helpful with the puking, and since she couldn’t crawl yet allowed her to play with toys and turn around when she wanted. Another saving grace, of course, was friends. There was one particularly bad day when I had been up since 3:00 in the morning (I still slept very little). Asa’s G-tube came out accidentally and I had to get a neighbor to help me so I could get it back in. We got used to the G-tube coming out eventually, but that day it was a new situation and added a lot to the stress load. In addition, Asa was especially pukey that day. By late morning we had gone through the feed, puke, change clothes cycle about six times, and I had to turn my back on her so she wouldn’t see me crying. Just when I was at the end of my rope my friend Teresa came by with her infant son Griffin. Griffin was younger than Asa but already crawling, and as soon as Teresa took him out of the carrier and put him on the floor, he marched straight over to Asa. He actually crawled, rather than marched, but you have to imagine a march-style crawl. They were instant friends. I felt like having Teresa there saved my life that day. Two friendly faces, and something going on besides me being crushed by my desperate exhaustion, at that moment was everything I needed.
One time, a month or two after leaving the hospital, when Asa was six or seven months old, a friend of mine asked me if I had wanted to “throttle” Asa yet. This was a well intentioned comment, the kind that hopes to normalize the frustrations of parenting an infant, and I understood that, but all the same hearing that felt like a kick in the face. If you’ve seen your baby nearly die from asphyxiation, and watched her struggle to breathe the whole of her life, you just don’t imagine throttling her yourself. As freaked out as I ever got I never once got angry at Asa. It was so clear that none of this was her fault, and so clear that she had been through a lot of hell. Every time I recalled that comment, which unfortunately haunted me for months after–a testament to my state of mind–I felt that kick in the face all over again. However, the larger context was this: we were at home, we were not any longer in the hospital. This point of reference made the worst day a hundred times better than all the days in the NICU. And even more than that, Asa was growing, Asa was healthy, Asa was happy. This is what kept me going.