One night in October, my daughter was up past 3:30 am crying, afraid that I might die soon.
Within a 24-hour period, she was bombarded with several examples, seemingly out of nowhere, of women who died when they were around my age. A plan to see a Frida Kahlo exhibit, an interest in learning more about the writer of “The Lottery,” Shirley Jackson, reading a poem about a mother’s last words to her daughter and hearing about someone we knew personally, all led to the discovery of women who passed in their sleep, three of whom were mothers. It made my daughter fear that I too would soon die in my sleep (May I be so lucky, when the time comes, to go in my sleep. Then again, maybe that’s the heart of my own insomnia).
While this scenario could happen in any family, the tragic irony is that according to GARD (Genetic and Rare Disease Information Center), I am in the life expectancy range for the Vascular Ehlers-Danlos syndrome (vEDS), that both my daughter and I have. Therefore, I can’t quite dismiss her fears with the certainty I would like.
vEDS is a rare, life-threatening, genetic, connective tissue disorder. It’s something you are born with. There is no cure and very little treatment.
Having a medical condition with a shortened life expectancy is not quite like an expiration date on a container of milk, but perhaps more like a “best by date.” I know that anything is possible and that I have a good chance of living longer than expected, maybe much longer in fact; but I feel that each medical setback I’ve had has taken a little bit more of who I am away.
I can view this as life robbing me — carving away parts of myself that I feel are necessary — or as Michelangelo, viewed art: “I saw the angel in the marble and carved until I set him free.” The question becomes is death the ultimate freedom; or will my freedom continue to express itself in my physical body so that I remain living and doing what I love most, being my daughter’s mother?
My daughter and I have a wonderful bond and a beautiful loving relationship. I don’t want to lose her any more than she wants to lose me. I listened to her fears and did my best to comfort her. We laid nose to nose through her tears, holding hands, professing our love. She said, “I have to memorize your face and every word you say.”
It broke my heart to see her in pain and to know that I can’t make her any promises for outcome, only intent. I told her, “I love you so much. I want to live. I plan to live. I am alive, right here, right now. I’m here.” That last sentence got her attention. Her body relaxed, and she began to listen.
I recognized the terror in her eyes, the same alarm I had as a child when I realized that my beloved Papa would someday be gone; and I would have to live without him, a reality I just couldn’t bear to embrace. A decade later, when he was given a shortened life expectancy, he fought it every step of the way. Some of his last words to me were that he wanted to live. He believed in the power of the mind, in intention and desire creating our reality. He did everything “right” (diet, exercise, sense of humor, & zero bitterness) and yet he still died too young. However, his death was not in vain, for it taught me that we always think we have more time than we do.
I often feel like I’m in a race against the clock with the Grim Reaper’s scythe as a second hand. Time feels as if it’s going by faster than ever before. Keeping the balance of being in the present moment, healing the past, and preparing for the future feels like break dancing on a tight rope over a body of water filled with piranhas.
All I can do is keep on twirling to the tune of Stephen Sondheim’s “I’m Still Here,” continue to give my daughter all the love I have, and remind her, myself, and the rest of the world: I’m still alive, and I am living every moment I can to the fullest. I’m here.
My daughter is aware that our genetic disorder comes with a life expectancy, but I don’t think she knows exactly when that is. Every option for transparency around this topic (tell her/don’t tell her) feels as if it comes with traumatizing effects. I focus instead on the fact that no one really knows when they will die, only that death is inevitable, and we can’t preoccupy ourselves with it to the degree that it incapacitates us into fear. Rather let us use it as a tool of awareness to help us stay more present to what’s most important.
Instead of trying to comfort my child’s fears by minimizing or denying them, I provided a space for her to examine and reframe them in a way that could empower her. I asked her questions about what death meant to her. I shared with her my own belief that the energy that makes us who we are never dies, only transforms. I reminded her about the Buddhist tradition of creating intricate mandala art from colored sand and then blowing it all away as a reminder of impermanence.
She later told me that what helped her the most was having her fears heard by me (and not just her stuffed animals). Her biggest comfort and take away was when I assured her that my intention and desire was to live and when I demonstrated that reality by actually saying the words, “I’m here.”
Contemplating our own deaths has lead us to living a more thoughtful and present life. Having an acute awareness of our own mortality is like paying attention to the calendar while on vacation: it helps us appreciate the days we have left and use conscious awareness as to how to spend those days.
We as a family spend less time complaining and more time playing. We make being in nature a priority more than socially obligatory engagements. We take better care of our general well being and health because we have a heightened reverence for our own lives. We focus on being present when we are with the people we love because we never know when or if we will see them again, not to the point of obsession, just to the point of awareness.
Living with the mindfulness that your life has a definitive end gives you permission to live life by your standards, leaving the expectations of others to wash away easily like footprints in the sand. Nature is always there to remind us of impermanence.
In February, my daughter was hospitalized for the fourth time in her young life. This round for flu and pneumonia, complications of a compromised immune system related to vEDS. The tables were turned, and it was I who was afraid of losing her. Even though I never uttered that fear, she nonetheless intuited it. She turned to me and said, “I’m here.”
Sometimes the greatest comfort we can provide to anyone about anything is to simply say, “I’m here” and demonstrate it by being fully present.
Sage Justice is a mother, a freelance writer, and an advocate for those living with rare genetic disorders. She writes open letters to her daughter on her blog and is an award-winning playwright.
In The Teacher Diaries: Romeo & Juliet Feyen has created a rare opportunity: a book about teaching, learning, and literature which avoids educational and pedagogical theory, and speaks directly to the process of remembering how our own experiences provide the basis for meaningful interaction with literature. The book is comprised of fifteen short chapters that reflect on the play’s key moments chronologically and a list of briefly-described classroom activities. The chapters themselves are each a lovely blend of the play’s thematic elements and the author’s experiences and memories as a teacher, mother, and young woman.
The volume strikes a delicate balance across the range of details that make her reflections so compelling. She braids her own memories, the diverse–but not overexposed–identities of her students, light doses of pedagogy, and the play’s iconic (and hotly debated) themes. As a teacher of literature, I found this particularly striking–that fine literature’s depth can intoxicate and induce expounding. Our desires to explore ourselves, our memories, and our relationships with art can be boundless. Feyen demonstrates remarkable ability to construct chapters that invite the reader back in time–both Shakespeare’s and her own–and into her classroom with swift, precise prose and detail selection, all while routinely avoiding cliche or schmaltz.
The chapter titles bespeak a wonderfully engaging mix of concepts and images: “Dancing with Frankenstein;” “Meeting in the Dark;” “Polka-Dotted Shoes.” Her focal points for each slice of the play as she guides students through it run the gamut from whimsical to weighty. Feyen deftly, conflates modern reality with the plotlines unspooling in Romeo & Juliet. Each chapter begins far away from the play: at the piano of Feyen’s living room; under the tree just off her property; in a memory of an epic high school foodfight; in her final days of high school, facing consequential young adult decisions and peer tragedy. The backdrops unfold naturally and directly; none feel like tricks or inappropriate conceits. Her use of chapter-contained motifs is skillful and unsaccharine. In this way, the word “diary” feels insufficient, as her intersections of Shakespeare and modern life bear the marks of careful structuring and reflection. Alternately, “diary” is utterly appropriate given that the highly personal descriptions of her teaching style and thought process are almost confessional, as when she acknowledges a spectrum of teacher emotions, including the need to send a student out of class, to become sharp and loud with a rowdy group, and to feel pangs of empathy for her loneliest students who hide it as best they can.
Working as an educator is not necessary to appreciate her clear, perceptive prose, but certainly secondary educators, particularly of English Language Arts, would find much that resonates. Feyen is clearly a dedicated, intuitive educator. Patient awareness of how young humans actually work, versus how we wish they would, saturates the ideas she employs and the practices she espouses. She addresses the obvious question many parents, students, and educators have faced: how do we manage the fact that this story features lusting teens? Feyen addresses the struggle shrewdly as a quick parenthetical within a direct discussion of engaging reluctant learners: “Usually we have to pause and clatter on about the word loins. In my professional opinion, it’s best to let them giggle or it only gets worse” (20). She knows them and how they tick. But she also knows what they crave: opportunities to revel in language, to access their knowledge of love, to watch seminal characters of a distant past grapple with struggles between duty and delight, parents and self.
The chapter “Juliet Moment” poignantly describes a perceptive parallel between the tension Juliet feels as makes her bold choice and the tension the writer felt as adulthood began and life at home ended. Throughout the book, she consistently reminded herself, her students, and her readers that the title characters’ depth and range of feeling as they simultaneously reckon with the intensity of love and come of age is the heart of the play–and the heart of human experience.
Feyen impressively remembers that she was once one of the young students charged with facing challenging literature. She writes in awe of them and with contagious, though not overzealous, enthusiasm for the continued relevance of Shakespeare’s characters and their struggles to modern humanity. Feyen admits that teaching the darkest hours of this play might scare her–that she sees the barely exposed inner pain of students struggling to hide it. And thankfully, she is unwilling to wrap each section with a pithy bow to provide a sense of security so that we can trust everything will be “okay.”
One of the most masterful examples of this occurs within the chapter “Tricks,” in which she blends her students’ and her daughter’s variety of anxieties–storms so swift they cause soccer games to be cancelled, their changing bodies, the “body talk” just before middle school–with heady decisions and consequences the characters face. About assisting young people to carefully work through the “slice of awkward pie” which is facing the changes of adolescence, Feyen asserts that “…this kind of deep thinking and creative work helps students to not so much run away from the tempest, but stand in it for a bit. Because, after this, the stars begin to cross, and lightning is no longer a strobe in the clouds, but a pulsing vein searching to strike and electrify. Cardinals sent to protect can make fatal mistakes, and children are left on the open field to play the game for themselves” (68). Feyen knows this is everyone’s destiny, that we will all have to face fears, to make painful decisions which may not end well, and that no parent–or teacher–can hope to prevent this from happening. Readers will certainly appreciate her clear-eyed yet highly personal narration of this reality.
Our reviewer Katie Chicquette Adams teaches English at Appleton’s public alternative high school, holding BS and MA degrees in English and history. She is a live storyteller with Storycatchers, Inc. Her work appears or is forthcoming in River + Bay, Mothers Always Write, Heavy Feather Review the radio segment “Soul of the Cities,” and on the Storycatchers blog. She lives in her hometown of Appleton, WI, after more than a decade studying and teaching in Milwaukee.
The Teacher Diaries author, Callie Feyen has an MFA in creative writing from Seattle Pacific University. She’s served as a middle school teacher, is the Teaching and Learning Editor and Children’s Editor for Tweetspeak Poetry, is a contributing writer for Coffee+Crumbs, and serves as the At-Risk Literacy Specialist in the Ypsilanti Public Schools. You can visit her at calliefeyen.com.”
I remember so clearly the way my mom talked about pregnancy. My sister who died. The miscarriages, one after another. Me, almost dying, kept in an incubator, unbearably special from the get-go. So, when my now husband and I married (on a day when I was thinner than I had been but still bigger than all of my bridesmaids), I warned him it might be hard to have children.
Not so for us, it turns out. Not in the way of some of my friends, heavy underwater in a wanting-not-yet that I can’t begin to imagine. No, I got pregnant right away. I threw up, took a test, and off I went.
That first puke, tidy and quick in a waste paper basket, was quite the foreshadowing. I had, it turns out, Hyperemesis Gravidarum. With both pregnancies. Yes, yes, what Princess Kate has. Or, if you prefer esoteric trivia, what probably killed Charlotte Bronte. Every day, every single day, I vomited. Normally five to seven times a day. One time, with the stomach flu, I lost count at twenty. One time, delirious in the ER, the meds kept it down to once or twice. It started around six weeks in and lasted until delivery with both my pregnancies. Some pregnant women glow. I vomited.
I couldn’t tell you the last time my body had anything to do with pleasure. But I could list a ton of failures. Back at work after my first round of bed rest, wiping myself on the toilet only to see bright red blood again. Taking an Uber to the ER when my vomit had turned white, passing out again and again as they tried to get me through having my blood drawn, checking my vitals. Or the time I got food poisoning and found myself wailing in the car, on the way to the emergency room, as my body tried to turn itself inside out, no please oh please no.
That was the incantatory refrain of my pregnancies: please oh please. Let me keep her. Let me keep him. For twenty months or so, nearly back-to-back, I asked my body not to. Not to piss on the seat of my car at the red light as I puked into my coffee cup (it did). Not to puke in the faculty restrooms during class (three or four times a day). Not to push blood up my throat, out my nose, down my legs. Not to turn aside, already vomiting, to a bush, an alleyway, someone else’s lovely front hall bathroom (but yes and yes and yes).
Someone else would beg for those trials and I know it. I didn’t hate my body. And I certainly didn’t hate being pregnant. But I waited. And puked. And bled.
There are other, smaller, failures. Breastfeeding. Just screw that whole endeavor. All those weeks of darkness. The C-section scar that was so clearly made by staples. But the truth is, that now, three years later, I have two beautiful children. And I am fat. Shop-in-special-stores kind of fat. Doesn’t even get mentioned by friends because I have so much else to be proud of. That kind of fat. That kind of body.
To be fair, I have spent much of my life fat—er. Fatter than most of my friends. Or fatter than the girl we all understood to be the ideal girl. Or fatter than every single one of the women in my dad’s family, young or old. But that is a relative fatness, one that bites but doesn’t maul. Yes, I cried. And yes, I worried no one would want me. But sometimes they did want me, and I could still shop at the mall, so I made it through.
There was even one glorious season when I wasn’t fat at all. I was 24, teaching for the first time, and I had a boyfriend that now, in the beauty of retrospect, I am pretty sure hated me and probably himself as well. It was a heady combination, easy, for the first time in my life, to forget to eat. I bought a bikini. That I tried on in the department store without a single tear.
Hate certainly helps when it comes to staying at least a little thinner. A gnawing sense of inadequacy that can easily tip into self-loathing. Some brand of it kept me swinging between a size six and a twelve for twenty years. Briefly a small, mostly a medium, every now and then a large. Not anymore.
Do you remember FitMom? Her picture, ripped abs shining, draped in small children, with the caption: “What’s your excuse?” Oh, Fitmom. I don’t have excuses. But I do have reasons. And a boatload of fears.
There are a lot of things that need to happen. I need to go to work, come home from work, do the work that work tells me to do. I need to wipe noses and buy diapers and wash laundry. And then there are the things that I WANT to happen so badly it borders on need. Someone else could rock my son to sleep. No real damage would be done. I know that, I do. But it still feels like I need to, like I get a contact high the moment his head sags and tips toward sleep on my shoulder. The weight of his body as his breath deepens. I could be somewhere else, but I still want to say, I need it. I don’t need to write those small poems that try to say what this all is. Poems strangely preoccupied with birds. And Biblical women. And oceans. Poems that don’t say fat but want to, and damn if I don’t need them.
The fears? What happens if I forget to teach my daughter to brush her teeth? What happens if she cries and I am not there? What happens if she eats nuggets, again. And again. Those fears are just as good as the needs are at keeping me rooted in my routine. Lately, I think in terms of fissures. This life I love so fiercely, am I checking for cracks? I worry more about erosion than calamity. Oh, do I worry.
My friends? The bridesmaids and college roommates and dear, dear women who keep me sane? In so many ways, our lives seem practically the same. Grumbles about who remembers to empty the diaper pails. Concerns our bosses hold maternity leave against us. A fierce need to keep our children safe, so fierce it startles us and won’t let us sleep.
They stayed not fat. Not even fat—er. They have babies and spin class and sweaters that drape just right. Maybe their hips are wider than before. Or their hair a little flatter, styled a little faster. I know we are all tired. But however hard won, they all won their bodies back.
Me? God, not at all. Instead, sometimes when I cough, I am still scared I will vomit. I still think in terms of food that might stay down (the answer is bread). I still think, sleep while you can. I still think, what does it matter? Your body is making a person, that is enough. Of course, it isn’t.
During my C-section to deliver my son I had my “tubes tied.” I was too afraid my children would remember the sound of me weeping on the bathroom floor, throwing up for another nine months. I was too afraid all I would remember was me weeping on the bathroom floor.
If self-hatred kept me in check for so long, the girl devastated when the scale hit 150, slumped on the elliptical for two hours straight, something else keeps me fat. I don’t hate myself. I don’t have time. My self-hatred was luxurious. I’m sure not all of them are, but mine sprawled and lounged through time and commitments and relationships. No, I don’t hate myself these days. But I don’t like my body at all. I would just absolve myself of bodiness if that were an option. It gets in the way, tires me, singles me out.
I read enough, mostly at night, on my phone, as I try to sleep train or something equally terrible, to know how this article ends: I found an app! Or yoga! Or a shake! Or just value in my own fat self! And look at that Instagram: proud, well-coiffed fat mom in dark rinse jeans.
I haven’t. I don’t. I am on Instagram, but I am not in my pictures.
I wish someone would name this threshold land of just dislike. Profound, powerful, but not unlimited dislike. I don’t love my body. But God do I love my children. I am not sure those two statements have anything to do with each other. I am not willing to Google it, or ask a forum, or post on social media. I don’t want to know. This is my motherhood, for now, and enough.
Maggie Blake Bailey has poems published or forthcoming in Tar River, Ruminate, San Pedro River Review and elsewhere. Her chapbook, Bury the Lede, is available from Finishing Line Press and her full-length debut, Visitation, will be available from Tinderbox Editions in 2019. She lives in Atlanta, GA with her husband and two small children. For more work, please visit www.maggieblakebailey.com or follow her @maggiebbpoet.
I’m not an English grammar genius, and I don’t remember a lot about literary terms from the classes I took in school. I do know what onomatopoeia is though. And now my six-year-old daughter does as well, since we covered that term in our Homeschool Cooperative Class last week. Onomatopoeia, noun: the formation of a word, as cuckoo, meow, honk, or boom, by imitation of a sound made by or associated with its referent.In class we discussed words like pow, smack, and ruff. The children in my class wore blank looks on their faces when I tried to teach them this massively syllabic word that represents such a simple concept. ”Let’s try it again, all together now…ON-A-MOT-A-PEEE-UH.”
Since this lesson, my four year old has begun calling me “Momma-pee-ah.” Depending on the situation it could be sweet and quick…”Mama-pee-uh!” or very long and drawn out…. “MOOOOOOOOMMMMMAAAAA-PEEEEEEEEEE-UUUUUHHHH,” and it either flits through the room like a butterfly or soars through the rafters like a heat-seeking missile targeting my eardrums. When he first started calling me that, I thought it was a little weird. It has the word “pee” in it after all. And then I realized that, in a way, it turned my Mommy name into something of a literary term
I’ve always said that the word “mom” should be a considered not a noun but a verb…an action verb. When the word is muttered around our home, it’s hardly ever attached to a statement like “I love my Mom.” It’s usually used more as a call to action: ”Moooooom, I need toilet paper!” (this is not just a statement, it is plea that I bring them toilet paper) or “MOOooom…I don’t feel good” (this is a request for a solution…medicine, a snuggle, whatever is needed for the ailment) or sometimes “MOOOOOooooOOOm…my brother won’t leave me alone!” (translation: “please do something about this annoyance..STAT!”)
I’m wondering what would happen if I ever started to think of these things as simple statements and responded as such. “That’s nice that you’re out of toilet paper, son. I hope you can find something else to use in your current situation.”
“Thank you for letting me know that you are not feeling well. Let me know what you are able to come up with to help you feel better.”
“The Bible says that brothers were made for adversity. Looks like you’re seeing the Word come to life before your very eyes. Fascinating and good luck!!”
As my children age and I am forced to allow them to handle more of their lives on their own, I can see how the word might morph into less of a verb and more of a noun. It suggests I will become more of a listener and supporter and less of a doer and a fixer. Sometimes I think the idea of “mom” as a noun sounds wonderful, especially as the verbal requests seem to pour in the minute I get a moment in the bathroom myself, or try to form a coherent sentence when conversing with my closest girlfriend. I have five children—a few moment’s peace sounds divine.
I am reminded of my own mother and how she sometimes confuses her grammar role where I am concerned. When I’m on the other end of the line saying through the tears, “Mom, I have a fever and the baby has a cough. I’m so tired and the children are sick of being cooped up inside.”
She could say, “I’m sorry that is happening to you, I just read about a homeopathic remedy for coughing that infants can take, and it was very interesting.” But, instead, she morphs back into verb mode. “I’ll be over in one hour with a pot of chicken soup as big as your kitchen sink and will take the kids to the park to play for two hours so you can shower and take a nap,” she says. And at that point, I’m extremely grateful that the switch between verb and noun can be so fluid.
Like I said, I’m no grammar expert. Say “past participle” to me and I may think you’re giving me directions somewhere. I’m learning along with my kids as we journey through all the English rules together. There are musical jingles to memorize that teach us about the items that comprise a great piece of writing, whether it be a poem, an essay, or a short story. Yesterday we wrote cinquain poems together…five lines…one word, two words, three words, four words, then one word again. We laughed our heads off when my eight-year-old son composed a riveting cinquain poem about vomiting. We’ll get through learning Language Arts together as long as one special word is allowed to float between knowing when to sit still and be someone and knowing when to stand and take action.
Kimberly Braunschneider is a homeschooling mom of five children ages 4-14 who loves to cook, read, write, craft, and enjoy the sunshine in as much spare time as she can muster up.