Asa Begins Kindergarten

Spot_12_Asa_Monkey_barsIn 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.

 

Spot_12_Asa_Teddy_5With 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.

 

Spot_12_Asa_Tree_5As 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

Spot_12_Cover_90Jenny 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.

Toddler Trach and Transitioning Off Her G-Tube

Spot_12_blog_TrachOur 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.

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Asa Left, Captain Underpants Right

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.

Spot 12: Five Months in the Neonatal ICU

Spot_12_Cover_90Jenny 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.

Asa’s Tracheotomy: Learning Language

Asa signs "cheese"
Asa signs “cheese”

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!”

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Asa signing “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.

Spot 12: Five Months in the Neonatal ICU

Spot_12_Cover_90Jenny Jaeckel is author of Spot 12: Five Months in the Neonatal ICU, the graphic novel coming out this October. 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.

An Infant’s First Year Home From the NICU

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.

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Asa outside with Parents (from Spot 12)

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.Puking_Spot_12

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.

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Spot 12 ~ Kirkus Review

Spot 12 is reviewed on a major book review website, Kirkus Reviews. The review is very positive and I’m so pleased. Kirkus Reviews decided to include the review in their print magazine as well, which is a great honor. Thanks Kirkus! Read it on their website: https://www.kirkusreviews.com/book-reviews/jenny-jaeckel/spot-12/

Or down below. I’m going to try and post once a month at least until publication time (October). Stay tuned for the next installment related to Spot 12. And don’t forget to check out the website dedicated to Spot 12. It will have the most current information about the forthcoming publication.

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Spot 12 ~ Kirkus Review

Jaeckel (For the Love of Meat , 2016, etc.) catalogs her daughter’s five months in the Neonatal Intensive Care Unit in this graphic memoir. When it was discovered that the author was suffering from a buildup of amniotic fluid, her doctors recommended inducing labor early. Shortly after the birth, physicians found that her daughter, Asa, suffered from tracheoesophageal fistula, a rare esophagus defect that needed to be corrected with surgery. So began a monthlong process to ensure that Asa could breathe and eat correctly and would be safe from the dangers of infection. It was touch and go, with Jaeckel and her husband, Cito, restricted in their access to Asa. Jaeckel was particularly affected by the stress of the situation.

With this memoir, told in paneled illustrations like a graphic novel, the author chronicles her experiences with doctors and nurses (of various degrees of patience and gentleness), supportive friends, her intrusive mother, and the esoteric acronyms that categorize hospital life (“Her SATS are low,” reads one speech bubble. “She had T.P.N. and now she’s still N.P.O.”). The people in the memoir are represented in the illustrations as stylized animals, reminiscent of Art Spiegelman’s seminal graphic novel, Maus . Jaeckel and her family, too, are mice, while the supporting characters are a mix of dogs, cats, deer, frogs, and other endearingly drawn creatures. The illustrations greatly soften what, as simple prose, might read as an extremely serious and upsetting account of a sick infant. The depictions of Asa as a tiny mouse with wires and tubes taped to her body are simultaneously adorable and tragic. In the book’s strongest moments, Jaeckel discusses and draws her own fraught emotional state, which leads to very striking panels of symbolic representation: tiny animals separated by immense, inky blackness, and Asa tranquilly aloft among the stars or suspended at the middle of the Tree of Life. Though hospitals, and illness in general, can often rob patients of their individuality, Jaeckel has managed to represent such a world in a unique and highly personalized way.

A memorable and beautifully executed memoir of a newborn’s difficult first months.

-Kirkus Reviews

Spot 12 ~ When and How

 

Spot_12_Cover_90This is the first in a series of posts I’m planning on the making of Spot 12.

I first started imagining making a book when Asa was around six months old and we were out of the hospital. The whole experience was so bizarre I thought it would be good comics material, but I also felt it as a big black cloud of grief and trauma that hung over me. Caring for Asa was still extremely complicated and stressful, and I had no space or ability to focus on writing, so the first thing I did was talk onto a cassette tape. I said everything I could remember about those five months, all out of order. I didn’t remember the order of half of the events, it was total chaos. The day I finished making that recording was winter solstice of 2005 and Asa was almost one. I felt lighter, as if that black cloud had a new container.

 

My friend Susan Steudel worked as a court reporter offered to transcribe the tapes for me and some months later I began to organize the text into a narrative and later still began to draw. The process of writing worked to detangle my thoughts and feelings, rinsing them out like masses of dirty wool. Once I had a solid enough story, I organized it into chapters and pages and began drawing. Drawing made me revisit each event in detail, which was sometimes awful, but it served to comb and plait the wool, in a sense, into a tidy and manageable package that eventually became the book. The drawing took about six months. It was a labor intensive process that I squeezed into the cracks (including hours of insomnia) of the overwhelming care Asa required. It was a full-speed sprint that I collapsed at the end of. I’m pretty sure my right hand went into a coma.

 

My friend and fellow artist Scott Malin told me about the Xeric Foundation and the grants they for years awarded to artists to self-publish graphic novels, and also introduced me to his friend and comics partner Josue Menjivar. Josue became my comics mentor and took the book project under his wing, designing the book, co-designing the first cover, advising me at many points and spending hours dealing with my rookie mistakes. I was lucky enough to win one of the Xeric Grants of 2008 and in 2009 the book went to the printer.

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Spot 12 ~ Description

Spot 12 delivers the gritty details of a new mother and her newborn daughter, Asa, during a five-month stay in the Neonatal Intensive Care Unit in this visually gripping graphic memoir by Jenny Jaeckel. A routine prenatal exam reveals a dangerous problem, and Jaeckel and her husband find themselves thrust into a world of close calls, sleepless nights, and psychological crises. Surrounded by disagreements and family tensions, death, and questions of faith, Jaeckel struggles to maintain a positive frame of mind.

Against the antiseptic, mechanical reality of the NICU, the dedicated doctors and nurses are drawn as sympathetic and wry animal characters. Doctor Eyes and Nurse Gentlehands are two of the caring individuals who do all they can to save Baby Asa. At times Jaeckel and her husband battle feelings of helplessness and despair, but their determination, hope, insight, bravery, and connection ultimately helps keep their little girl alive.
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A Year of Books – Spot 12 Gets Legs

 

Meat_Front_3_small copyFor the Love of Meat is moving ahead, with the publisher giving away copies of the advance copy and Meat to appear for preorder in the next week or so.

Meanwhile, friend and book designer extraordinaire Josué Menjivar has been laying out the new edition of Spot 12: The Story of a Birth in English and Spanish. My publisher Erika Lunder of Raincloud Press helped edit this new edition to make a more focused and a little less-dense read. That freed up some space to use a bigger font so that those of you who have mentioned my graphic novels have been hard to read will have nothing to fear! This version is bigger (8×10) and we’ve done all we can to make it better.

Spot 12 is going to be very busy this Spring and Summer, according to my publisher, it’s going to Chicago for the Book Expo, one of the largest book fairs in the world. Apparently up to 1000 copies will be given away by the publication date in October of this year. That sounds like a lot! But I am excited about the book getting out there, and I’m especially grateful to Rita Arciniega for her tireless help with the Spanish translation of Spot 12: Cunero 12.

 

If you know of an organization that might be interested in using Spot 12 in their outreach please contact my Spot_12_Cover_90publisher (raincloudpress@gmail.com). That was our hope doing the Spanish version that it would give the project legs and be a resource for more families (summary below).

 

This unique graphic memoir is about a mother whose newborn spends five months in the NICU, written and illustrated by Jenny Jaeckel. It is a moving, raw and honest look at hospital- and crisis-induced PTSD and the effect of an extended medical stay on a family. The journal Advances in Neonatal Care called it “very impressive,” and said that parents “will find comfort in how the author expresses their pain.”  Nurses, families with special needs children, social workers and anyone in the pediatric field will have something to gain from this mother’s perspective.

 

For the Love of Meat: a description

For the Love of Meat….to be published in 9 months. The blurb for the flap of the book is unveiled:

      For the Love of Meat combines whimsical and surreal illustrations with engaging, intimate encounters that explore the depths of human experience. Unique and diverse in setting, and with touches of magical-realism, these nine stories will tug at the strings of the wandering, romantic heart, setting it delightfully ablaze.

       In Stumble and Fall, we meet Dara, a young Londoner hungry for adventure who, unwilling to settle for the safety and comfort of home, travels to Vancouver, city of immigrants, where a handsome stranger entices her to take a leap into the unknown. The Kid takes us to Granada, Spain, to the fix-it shop of Rubén, and his encounters with a young traveller, camelwhose flirtations spark memories of a past love that haunts and hinders him when a chance for a new tryst appears. The Two explores the tender bond between two young cousins, growing up in 1940s Philadelphia, who are as inseparable as light and shadow. As one of the girls tragically becomes ill, the impact on the other shows how true connections of heart and spirit are not bound to time and place. And finally, Mémé, set in Haiti in the 1800s, is told from the stunning perspective of a slave who, as a child, witnesses the brutal murder of her mother, and survives through her connection to her brother and the natural world.

       Jenny Jaeckel’s compelling storytelling takes us across the world and through the ages, with remarkable insight and soul-moving moments, when paths cross and time unfolds. Her language, imagery and attention to detail plunge the reader into these memorable lives, soaking us in tales of adventure, courage, love, loss, longing and all the hope in between. 

Check out For the Love of Meat‘s dedicated page.

For the Love of Meat ~ Proof

Meat_Front_3_small copyThe first proof of For the Love of Meat: Nine Illustrated Stories has just been ordered. I can’t wait to see it in print for the first time. Many thanks to Josué Menjivar of Fresh Brewed Illustration for his inspired cover design. My publisher informs me that it the publication date will be in August of 2016. Time enough for copy editing and submitting to all the major reviewers. Advance copies will be available for review by bloggers and media. If you are interested, please see my publisher: Raincloud Press. Stay tuned for a description of this collection of stories, my first foray into fiction.

Currently, I’m working on a companion piece to Meat. I’ve taken one of the stories and turned it into a novella. It is also illustrated and for adults. I’m doing a rewrite now, and deciding where the illios are going to go in the text. Stay tuned for more on this, titled “Waking Star.”

 

See the dedicated page for For the Love of Meat.