Jesse Clark, farmer and committed free spirit, gave birth to her fourth baby two Thanksgivings ago, shortly after launching her own cheesemaking business. When it turned out that cherubic Zeke had Down Syndrome – “a very healthy baby boy with Down Syndrome,” she announced on social media – the notion of raising a baby as a political act took on a new urgency. Between raising kids and food, she found time during Down Syndrome Awareness Month to tap out her thoughts with one thumb, demystifying, calling forth smiles and calling out the status quo one post at a time. What follows is an extended excerpt.
I. What is there to say about Down Syndrome?
I don’t talk about Down Syndrome much because what is there to say? But this summer people (mostly strangers or near strangers) have said some really horrible, stupid, mean, rude things. I know that these people have no idea they’ve been offensive, but their comments make my heart race and I break out into a sweat and it’s hard to shake.
Yesterday was a particularly rough day starting with some heartless and thoughtless comments I read on FB. I warned the kids that I might cry but that I was ok. I reached out to two of the mamas in my special needs support network to ask “Am I crazy? Does this say what I think it says? Does this sound as horrible to you as it does to me? Do you run into this and how do you cope?” The exchanges were littered with F bombs.
I worked in the garden, mixed bread dough, ate the season’s last tomato sandwich on a picnic blanket with the littles and took a mushroom hike and there in the woods just outside the house that Zeke was born in, it hit me....
A memory of a message I received from a dear friend when Zeke was three months old. I looked it up and re-read it. She was gently prepping me for these upsetting exchanges. Letting me know that I should expect them and giving guidance on how to avoid them or tune them out on the days when you just can’t muster the emotional energy to process it.
The last line of my response to her read “Luckily we have all the love and support we need because we never have communed with hate.” And she replied “Amen to that Sister!”
So here I am, just wanting to thank each and every one of you for having our backs. This community, here in real life, and many of you who I’ve never even met, you are a blessing. Your love and kindness and understanding and generosity mean the world to me. Every homie with an extra chromie and their mamas should be so lucky
II. From the beginning
Early spring of 2018 I was feeling really lousy. I had this extreme fatigue that I could not get over. A good friend was battling cancer and another friend had just died. It had me scared so when I found out I was pregnant there was a moment of rainbows... But like all rainbows, the relief faded and the shock and complete bewilderment set in.
I would love to tell you what I was thinking during that time period, but honestly I think it was a lot of gibberish. Mostly on repeat. I know there were also moments of and an equal number of wtf? and htf?
I declined prenatal diagnostic testing in all of my pregnancies but I also remember considering it with Zeke. I birthed the other three in my twenties and I was 37 when I was pregnant with Zeke, but the consideration probably had a lot more to do with all the wtf and htf moments rather than my age.
Let me clarify. I did decline prenatal diagnostics in all of my pregnancies, but it should be added that the diagnostic testing available in 2001 was very different from what was available in 2018. There was no first trimester blood test available for my first three pregnancies. I was only vaguely aware of the fact that it was available for my pregnancy with Zeke and I never did actually research it.
You may have experienced a mother or a grandmother who, in a very judgmental tone, starts sentences with, “Well, when I was raising my kids....” I sympathize with that woman because having babies 18 years apart, it’s hard not to roll your eyes at the newfangled ways. The car seat laws and the warnings about not putting infant seats in the top of a shopping cart and prenatal appointments in your first trimester... who ever heard of such a thing?!
There is a common misconception about parenthood. It’s not so much about creating life, it’s about receiving life. It became clear eventually, that for me, that means ready or not and come what may.
III. On prenatal testing
I remember with perfect clarity the morning that I got my head in the game and became baby focused. I told Bill, we’re doing this. We’re having a baby. I want this. I rolled out of bed and headed out to work an event. A guy was hitting on me big time and said something about me being so “stoic.” I was tempted to tell him that I was just concentrating really hard on not throwing up, it was morning sickness not stoicism that he was finding so attractive. Working in the food industry through morning sickness is just so brutal.
To be clear, I’m not opposed to first trimester prenatal testing. It’s a viable option and I have no desire to persuade women for or against it. I don’t know what I would have done if I knew that Zeke would be born with Down Syndrome. I do know I’m glad that I didn’t know. And I recognize fully that I was in a position to choose that.
At 22 weeks’ gestation I had my first ever prenatal anatomical ultrasound. I had a new midwife and it was a standard part of her care, which it hadn’t been with my other midwives. I didn’t question it and I can’t say why exactly, but I suspect that it was a little bit about being a good patient.
At the prenatal following my scan my midwife casually mentioned that the nuchal measurement was borderline, but it didn’t really indicate any concern. I didn’t know what that meant and I didn’t ask.
I looked it up afterward and learned that the nuchal measurement is used to predict chromosomal abnormalities, including Down Syndrome. In doing a little more research what I found over and over were women sharing stories of their nuchal measurements being way more than borderline and delivering babies with no abnormalities. I put it out of my mind entirely and never even mentioned it to Bill. It was all a bunch of newfangled hocus pocus.
IV. On support, or lack thereof
It’s a problem for me that women have trouble finding support for a pregnancy with a prenatal diagnosis within the medical community. A lot of people feel that this stems from eugenics, and it’s hard to disagree entirely, but it also stems from the overall lack of support for families in general.
Doctors are aware of the emotional and financial implications of having a medically fragile child who will require care for life. So many families are isolated from extended family, living paycheck to paycheck, possibly uninsured, and caring for a child with special needs is relentless and costly.
Some occupations don’t come with insurance plans. Hello, farmer here.
I think what I was most unprepared for and what hurts the most is the social/political conversations around the topic. Some people believe completely in funding public programs, but then in turn they view people with Down Syndrome as a costly problem solved by abortion.
Others are outspokenly against abortion and time and again they’re the same people railing against funding public programs and they seem to think that the answer to every obstacle is adoption.
I used to like the idea that raising a child is a political act but having Zeke changed the meaning of that. I just want the world to hurry up and be safe already.
I should mention that there’s a third group of people. They’re really generous loving people with open ears and open minds and overflowing hearts. We see you. We love you. Thank you.
V. Then came baby
Zeke was born at home, as planned. Almost as planned anyway.
I worked my butt off during that pregnancy. I found myself pregnant just four months into starting Nonchalant Cheese. I didn’t know how I was going to manage a baby and a new business, but I also knew that if I was going to have a baby, the business needed to work. I’ve never had to leave a baby to work, and farming is one of few professions that allows you to make your own hours and bring baby along.
I took every extra gig and made every penny I could during those months to build up a nest egg. I had one more crazy week to get through, the last day being Thanksgiving, and then I’d finally get to nest.
Only, I served Thanksgiving dinner at 4pm on the dot, as planned, and I know because that’s the exact moment I could sit down and time the contractions I’d been having.
Were they as regular as they seemed? Yup.
I had two weeks until my due date and my pregnancies last long. I would stop these contractions. I would will it. I didn’t tell a soul, but when I crawled into bed around 10 p.m., Bill woke up and said “What are you doing Kid? You OK?”
“...I’m totally having contractions.”
My nesting involved cleaning up Thanksgiving dinner and folding the clean laundry.
I had nothing ready but a stack of clean towels.
VI. And a diagnosis (part 1)
My last three babies I delivered “sitting on my knees,” think Vajrasana pose but knees apart. I like to catch my own babies, and I should have warned my new midwife because every time she gently offered assistance, I said “I got it, I got it, I got it.” In threes, just like that, and Bill laughed about it for days.
When I looked down and saw his head, his profile to be exact, I saw instantly that Zeke had DS. All through my pregnancy Sigh was all abuzz with wonderment about who this baby would be and she couldn’t wait for him. I told her it’s so exciting to meet the new baby but then you still don’t know much about them, heck she was 8 and I was still learning new things about her and myself too. When a baby is born, you know genitalia, length and weight. Not much. So when I saw that Zeke had DS, my first and only thought was “Wow... this one came with more info.”
Then I birthed the rest of him and when I pulled him up and looked at him face-on, the DS disappeared. I saw no sign of it at all. Gone. Oh, babies are beautiful and funny looking.
The next couple of hours are foggy. I think that’s pretty normal actually, birth is surreal and doesn’t lend itself to memory well. I know that I took a shower and I remember hearing my midwife tell Bill to take his shirt off so Zeke could stay warm against his skin. I remember feeling eager to get back to them but also that the hot shower was magnificent.
I had the girls in bed with me when my midwife took Zeke for his infant exam. I told Esmé that she could take pictures, another thing we’d forgotten about during the surprise delivery. Zeke was in my arms following the exam when I heard the whispering... that’s something you hear about time and again in these stories, the telltale whispering.
My midwife came back to the bed and explained that Zeke had features that indicate DS and then quickly added, “Bill should be here for this.” Esmé ran from the room. I wanted to stop her and tell her everything was ok, but I let her go. Jonah says that when she got to the bottom of the stairs she asked where Bill was and said, “Something is wrong with the baby.”
VII. And a diagnosis (part 2)
Midwives are the very best.
She didn’t just say “Your baby looks like he has DS.” She walked us through it. I felt no need to argue it, I had already gotten that glimpse of it. But when she started with the gap between his big toe and the others, I thought “No, I have that! He got that from me!” In the DS community, it’s affectionately referred to as sandal toe (how do I not have a flip-flop emoji?).
She showed me that each of his palms had a single crease running through it rather than two. All I saw was a wrinkly pink baby hand. She told me his limbs were short. I couldn’t see that either but I knew that when I held him he felt like a kidney bean. Jonah, my oldest, always describes Zeke’s shape as that of a bear cub. He didn’t have that gangling newborn thing going on.
We ran down the list of medical complications associated with DS, specifically a 50% risk of a heart defect. His heart sounded good, but my midwife wanted a doctor to look him over. I thought that we needed an immediate pediatric office visit. I thought that the obstacle would be finding a pediatric appointment on a holiday weekend. No, we were looking at choosing a hospital. This news was so much worse than a DS diagnosis.
I was going to write that most people have a misunderstanding about home birth, but the truth is most people never look into it, doctors included are working off of unfounded presumptions. Home birth mamas dread the hospital transfer.
There is a large midwifery practice in New Jersey that offers home birth, birthing center or hospital services. I decided that we would go to the hospital they use, thinking they’d be most knowledgeable about home birth.
Oh, but who wants to leave their warm bed and comfy pillows and other children and stocked fridge just after delivering?
VIII. The dreaded hospital transfer
We did have a car seat, somewhere. It had that new anchor system thing. I didn’t know how it worked. But wait! We didn’t have a car. Mine was in the shop and we wouldn’t fit in either of the pickup trucks with a car seat.
Bill came to me and told me that all of his decent pants were in the laundry. He was wearing ripped up farm jeans over a red union suit and was in desperate need of a beard trim and new shoes. Why on earth did I order a union suit in red? Who is he, Pa Ingalls?
I didn’t remember how to pack a diaper bag, but I figured it should have diapers. I had been gifted a generous bag of cloth diapers that I was warned would need a good washing. I hadn’t gotten to it, but they’d have to do and Esmé packed a bag of fruit and nuts and water.
Zeke received two gifts when he was still in the belly, one being a hand-knit blanket. The house I live in had previously been inhabited by a horticulturist who worked in the historic gardens. The summer I was pregnant, her mother and grandmother came to visit. The three generations of women sat in this house and knit a blanket for Zeke. Its border is lined with hearts and every time they finished a heart, they stopped and said a prayer for the baby. I needed that blanket, above all else. I knew that blanket was coming.
The kids were staying home, but before we left, Esmé had one question. “Does this mean that every time someone says ‘retard’ I have to punch them?” Umm... can we talk about this when I get home?
I used the bathroom before we left and all the postpartum aches and pains set in. I did not want to do this. I wanted back in bed and I wanted a turkey sandwich.
Zeke and I rode in the midwife’s car and Bill followed in the pickup
IX. To the ER, bright and loud
It was bitterly cold and the moon was full and impeccably bright in a pitch black sky. My midwife told me that she was going to be quiet so I could try to get some sleep, but if I had anything I wanted to talk about, we could talk. I told her that Bill’s night vision was poor and he might lag behind.
I started wondering about the potential heart defect. Would he be in imminent danger? Was it a ticking time bomb sort of thing? If I spent the last moments of his life riding beside him in a car instead of holding him, I’d be so regretful. I stuck a finger under the car seat’s chest harness so I could feel his heartbeat and I did not sleep or talk.
My midwife had called ahead to let the hospital know we were coming and they directed us to the emergency room. ER’s are bright and loud and full of suffering and germs. The juxtaposition between home and hospital is extreme. Zeke didn’t have an official name so he was checked in as Baby Boy Becker.
The ER staff was friendly, and the neonatologist who met us was great. He had an Irish accent. The Irish are more familiar with home birth and DS both. He agreed that Zeke had DS but a karyotype would be ordered to confirm it, and he wanted Zeke to have a chest x-ray.
He suggested we stay overnight explaining that babies with DS sometimes have a hard time with breastfeeding due to low muscle tone. He thought it was a good idea to stay so Zeke’s feedings could be monitored.
I was resistant. Zeke is my fourth, I’d know if he was having trouble. Besides, the best way to establish breastfeeding is to have a comfortable mother. I’d be much more comfortable at home. I vocalized all of this but my fight was gone.
In 24 hours I’d done farm chores, cooked Thanksgiving dinner and given birth without a wink of sleep. I was whipped. I looked to Bill and my midwife for input but their faces revealed nothing. I think all the “I got its” had conveyed that I was calling the shots.
X. And now to the NICU
I relented, and then there was a shift change. The new pediatrician who came to admit Zeke was everything I feared. My worst nightmare embodied.
She stood outside our room and spoke to the NICU on the phone explaining that she was not going to admit “a baby off the street” to a mother-baby room. A baby off the street? I asked out loud. Bill and my midwife nodded their heads, I heard right. Like I found him on the curb? Like I didn’t have my midwife sitting in the room with me with a folder full of charts documenting my prenatal care?
We were headed to the NICU.
Between my disgust with the doctor and my exhaustion, I was not thinking clearly or asking questions. In fact, the information being provided was sailing straight over my head.
My midwife explained that in the NICU there would only be a reclining chair and some sort of weird love seat thing. It didn’t matter to me because we weren’t staying now. This doctor wanted Zeke to have the chest x-ray plus an EKG and an echocardiogram. We were heading to the NICU, intensive care. We’d get the tests immediately and hightail it out of there, right? Ha ha ha.
The nursing staff is a cast of characters. We started with the comedic nurse and the old timer who delivers subtle truths about the doctors and policies with a wink and a nod. Add to them the social worker with the welcome to DS gift basket and the chaplain who was soft and kind and made mildly politically incorrect comments about mama’s boys and daddy’s girls that are embarrassingly accurate in our family.
We were growing impatient. With the shift change, we’d be working with a new neonatologist, but he hadn’t shown up yet. I finally asked the wink and nod nurse if she knew when the doctor was coming.
“Well,” she explained, “he came but you were nursing. He’s kind of old fashioned.”
Excuse me? Excuse me?
XI. Cold room, cold nurse
With the evening shift change the wink and nod nurse was out and the sadistic night nurse who inspires Pink lyrics was in. She was never friendly, but a few hours into her shift she berated me for falling asleep in the chair with Zeke. I knew this was a hospital “no no,” but women who drown their children deserve more compassion than she showed.
I had dozed off in a recliner while trying to figure out how to send text messages to announce Zeke’s birth, inform that we were in the hospital with a DS diagnosis and assure that all was well. Specifically for my mother who is prone to panic.
The room was cold, I was cold and I noticed that every time I laid Zeke down his pulse ox monitor beeped. I had done a little research on my phone and discovered that cold extremities will give a false reading. I re-dressed Zeke in the hat we arrived in, swaddled him in the prayer-full blanket, laid him down on his back and closed my eyes. When the nurse returned an hour later she was in a rage. Seething. NICU babies did not get hats or blankets.
Sorry. No one told me.
I asked her to turn the warming light over the bassinet back on. She said he didn’t need it. She stared at the monitor and clicked her tongue and repeated “this is bad” and refused to tell me what was bad.
I cried. Tears streamed down my face and I did not wipe them away and I waited for her to say a kind word or hand me a tissue but nothing. She left the room. I put my chair fully upright, nestled Zeke in my lap and willed my eyes to stay open. I question so many of my memories of that night but I obsessed over them for months, constantly replaying them, so how off could they be?
In the morning, enter nurse Bernie. I named a bull calf Bernie and a heifer calf Bernadette that year, that’s how much I loved her. She entered the room, brought her palms to her arms, rubbed vigorously and moved to the thermostat to turn up the heat. She grabbed a blanket, swaddled Zeke and laid him on his side. I knew it, I F’n knew it! It was cold and NICU babies could have blankets.
When the new neonatologist showed up later, I heard her being briefed in the hall. The night nurse reported that Zeke was “dusky blue” during the night.
XII. Zeke gets a name (or keeps it)
The nurse was feeding the other baby a bottle and I was nursing Zeke. I asked “What’s this little one’s story?” and the nurse explained that she couldn’t tell me anything. Of course, right.
She said, “So... you gave birth at home?”
“So... what ... you give birth and then ... you have to clean up all that mess?”
Someone seeking understanding. Someone not satisfied with false judgement and disdain.
“No! You are the queen. You stay in your own bed next to your own bathroom and you have all your stuff and lots of food and you don’t have to leave your kids and your midwife takes care of everything,” I answered from the vinyl loveseat I’d be sleeping on.
I can still see my midwife pulling a blood soaked sock off my foot and asking if I wanted to save it. Nope.
“...that sounds really nice actually.” The nurse was thinking, I could see it in her face.
I crashed hard. I could have slept standing on the double yellow line of a highway. I woke to a baby crying and went to Zeke. It wasn’t him, it was our roommate. I didn’t touch her despite my overwhelming urge to lift her. I read her name and DOB on her bassinet tag. I looked to the door, but no one came. I said, “I love you” out loud and laid back down.
I decided that our baby needed a name. We had called him Zeke all along but Bill had assumed it was just a belly name. Zeke got off lucky considering I called the others Pooper, Gunk, and Oil change.
XIII. Thank God for the NICU
We left like it was a prison break, hurrying before they changed their minds, but first I had to stop at the fridge to pick up my leftovers.
A Hasidic couple sat together eating lunch at a table by a window. The husband noticed Zeke in his car seat. He asked enthusiastically and joyously if Zeke was going home.
Yes, he is!
How long has he been here?
You have a baby here?
Yes! We have a long way to go yet, but thank God for the NICU! Thank God for the NICU!
Whoa. Yeah, he was right.
Yes, I answered.
I tried to repeat after him “Thank God for the NICU,” but it came out thank goodness.
I choked on the word God and I regretted it instantly.
I’ve always felt comfortable with the word God. For me, God is easily used to represent every single thing outside of our control. A dog is a dog and a tree is a tree because... God. We are who we are because, God. Our likes and our dislikes, God. It’s easy then to see our differences are God and that we all have in common. God as the great uniter.
I had recently been in communication with someone regarding religion and women’s rights. She didn’t like my perspective and started referring to her God as the one true God, making a distinction from my God.
Her God was so exclusionary, but this man was radiating love and only looking to make connection. He would have accepted my use of the word God, and I wish that I had used it. I feel that by not using it, I in turn drew a line of distinction and separation and it hurts my heart still to think of that.
Thank God for the NICU. Thank God. Thank God. Thank God.
XIV. We had a healthy baby
Bill would not have chosen to go to the hospital the day of Zeke’s birth. It was my decision, and I was so full of regret and habitually replayed the experience analyzing each step and agonizing over every “I should have...” for months.
To be sure, it was not a ticking time bomb thing and it could have waited until we could see our regular pediatrician. But I will never forget the solace of climbing into bed our first night home with every t crossed and i dotted and no more wondering and no more waiting. We were in the clear. We had a healthy baby boy.
Down Syndrome was never a crushing blow to us. We were naive about the health complications and had/have things to learn, but what we did know about DS didn’t concern us at all.
Maybe it’s because we built a life around our love of all things mundane and simple, the peace we find in growing vegetables and working with animals. Our meditation being shoveling sh*t and milking cows. The prize of each task being the freedom to let your mind wander, the goal being just having a meal to share.
Maybe. Anyhow, among our favorite movies are Rain Man, I am Sam, The Other Sister, What’s Eating Gilbert Grape, Temple. At the grocery store we deliberately choose checkout lines with cashiers or baggers with special needs. We go out of our way to make the acquaintance of individuals who may be overlooked. I’ve heard from the kids’ teachers that this carries over into school as well.
Our first day in the hospital someone asked Bill “So, you don’t find this devastating?” That’s the story he retells the most. Um, no. We don’t.
A neonatologist called days later regarding Zeke’s karyotype. Her voicemail was so chipper and reported that she had “an update!” like a game show host revealing a prize. My heart pounded and my hands shook dialing the office back... I was so worried she’d tell me it was all a mix up and he didn’t have DS.
When Sigh was born, Esmé, age 5, said “Aren’t you glad we got Sigh and not some other baby.” That’s the way it is. Zeke is ours. Ten fingers, ten toes and an extra chromosome.
XV. I wanted moms not experts
I’m a researcher by nature. Hand me an atlas or a dictionary and I’ll lose an hour in the blink of an eye looking for nothing in particular.
Being a natural researcher I wanted all the info I could get on DS, but being a natural parent I wanted to burn all the books and just enjoy the simple days of nursing and footie jammies and burp cloths.
People are quick to tell a new mother, “It gets easier.” If that’s what you’re looking to hear, don’t come to me. I’d been lamenting the growth of my children for years, repeatedly telling Bill that I’d take dirty diapers and sleepless nights over big kid challenges any day. I longed for the sandbox days. I wanted to mother Zeke instinctively as I had the others.
Remember the concern about breastfeeding and DS babies having low muscle tone... Zeke had been feeding differently than my other babies. Before we left for the hospital, I lied to my midwife about it. It was too early to be concerned, too early to blame it on DS, and I would go to the hospital, but not with a baby who was having trouble. He needed a chance.
What I noticed was not low muscle tone but that Zeke’s rooting reflex was off. He didn’t search for the nipple like my other babies. When he was hungry he’d cry at the breast for a good 10 minutes before he’d realize that what he wanted was right there.
You know what we did? We figured it out. I told no one, stayed patient and within 72 hours we were golden. In fact, Zeke’s latch was better than my other babies’.
Lactation consultants are angels for some moms, other moms just need some space. We see this in the barnyard too. We give ample time for things to work themselves out before we as farmers intervene. Mostly they do get the hang of it.
But the books, the dreadful books are so full of “shoulds” and experts. I had no trouble ignoring parenting books for the previous 18 years, but this time around they nagged at me. They were constantly traveling back and forth from the nightstand to the furthest dark corners of the closet.
I wanted moms not experts. Until I could find them, we’d have lazy mornings, early nights, and he’d be strapped to me in between. Just living.
XVI. How to connect with our new tribe?
We have a Christmas Eve tradition in which all the kids shop for each other at the Highland Lakes General store. They gift each other things like KEEP OUT signs, cigarette lighters, packs of gum, alpaca yarn, envelopes and outdated DVDs that had once been for rent.
For years I’d bring them in one at a time, leaving the others in the car, but now I only escort Sigh. The year Zeke was 6 weeks old at Christmas he slept in the car with the big kids when I brought her in.
I recognized the cashier as a mom with an adult son with DS. Jackpot! Many times I’d seen her sunbathing at the lake and we always enjoyed watching her son dance passionately to music he played through headphones.
Now was my chance, but what to say? How do you do this? I kept glancing up at the line of men behind us. Do women even shop here? Can I delay the purchase of your 6-pack and lotto tickets to talk babies for a moment?
The purchase was over, the receipt tape ripped. I stood there a moment too long, silent and smiling, took one last glance at the line of men and left without saying anything.
Ugh. Could I go back? Pass her a holiday card introducing myself? “Call me.” I did nothing, and the next year she was not magically there, a Christmas miracle, I looked.
Months later I sat outside a cafe when a woman walked by, a maybe 12-year-old boy with DS trailing behind her. Aside from leaping out of my seat and chasing after her, what could I do? I sat tall just hoping she’d notice me, really hoping she’d notice Zeke, the markers indicating that we’re part of her tribe.
When she had passed, the teenage girl with her asked, “Did you see the baby?” The mother turned and “awwwwwed” but nothing more. Maybe a decade beyond me on this journey she still didn’t know how to do it either.
It’s presumptive to assume we’d have anything in common, but even people walking dogs will stop to chat about their dogs.
XVII. Therapy versus real life
Early Intervention is a nationwide program that provides services like speech and physical therapy to children under 3 with developmental delays and I’d only heard good things about it. For me the idea of having an overscheduled infant was just the cruelest joke, after complaining for years about overscheduled teens. All the extracurricular and just plain old curricular activities felt like an infringement on real life and what we were supposed to be doing.
Early intervention struck me the same way. The idea of three to five appointments per week with a therapist who would come and, yes help, but also analyze and monitor the progress of my perfect little baby made my skin crawl.
Bill and I were both still having a really hard time with the word disabled. Differently abled didn’t sit well either. Zeke is the youngest of 4, each individually unique, Zeke included. What’s the big deal?
That’s what I kept asking the books... “Ok, but what do I actually need to know.” There were so many words but not much that felt relatable even in the memoir genre.
If nothing else the NICU had me acutely aware that there was a range of wonderful, mediocre, and detrimental in the healthcare profession. I’d like to say it had me experienced in discernment but in actuality it continues to have me charged with avoidance.
Early on I heard a mom say “I don’t really see a difference between the babies who have therapy and those that don’t, I just do it because it makes me feel better.” Bells rang and birds sang. So, I can not do it because it makes me feel better, right?
Keeping mom happy is really important, I’d say it’s imperative.
I couldn’t say exactly how old he was but at some point my heart sank thinking that Zeke should be making eye contact. It was the first moment of sadness. I looked it up to see how delayed this milestone was. I was wrong. He could wait weeks and still fall within the normal range. I was just making myself neurotic.
The very next day he locked eyes with me. Bill would ask a half a dozen times each day, “Did the other babies look at you like that?”
This is a soulful one. Relax Mama.
XVIII. Coming out of hibernation
We hibernated hardcore Zeke’s first winter, as planned. The first public event Nonchalant attended was an Earth Day celebration the same weekend a dear friend was burying her son who died young and unexpectedly. She’s my truest childhood hippie role model and the reason why “far f@cking out” is a part of my vocabulary.
Celebrating Earth Day was the next best thing to being with her and the perfect place for Zeke to make his debut to our extended community.
Years earlier, in the same park where the Earth Day event was taking place we saw a young man with DS being bullied and picked on. Not by kids who needed guidance but by (youngish) adults... they too needed guidance but it’s harder to sympathize with a bunch of punks smoking cigarettes and bullying a man with DS at a playground.
The absurdity of it made them unapproachable. I was afraid of them to be frank so I turned to the man with DS instead. I knew his name only from reading the name tag he wore to work in the grocery store but I used it, calling out to him to ask if he was OK, placing myself between him and the bullies.
He was clearly distressed, face flushed, pacing back and forth. He did not acknowledge me and I just stood there. A human barricade. Eventually another man showed up and stormed up to the taunters using colorful language and chased them right out of the park.
I asked again if he was OK, if there was anything I could do. He never responded, I didn’t think he even looked up to see my face but about a month later he approached me in the grocery store. He wanted to assure me, “I told those guys to stay away from me and my family.” I told him I was glad to hear that and I thanked him for letting me know. I’m pretty certain he was trying to comfort me.
I saw him dancing to the live music at the Earth Day event. I wanted to take Zeke and join him but I knew I’d sob, I’d be a public spectacle and I was in good company but I didn’t know that the onlookers would understand my joy.
XIX. It takes dedication to be a free spirit
Jonah would come home for lunch every day and I would lay Zeke on his stomach for “tummy time” right in the middle of the table. Even amidst the activity, this position only ever inspired him to suck his thumb to sleep. Visitors were regularly shocked to find our living centerpiece still sacked out on the table long after lunch.
Despite his seeming lack of interest, Zeke rolled over the day he turned four months. He rolled as if he always had and wasn’t about to stop for anything. The table days were over.
Spring got busy like it will for farmers and summer got busier.
This was the fourth year we would be camping out of a converted school bus April through October so we could rent our house out on Airbnb, being the scrappy farmers we are. The first two years were great. The third year I was pregnant and it never stopped raining and everything was damp all the time and I was so anxious to move back to the house. I was hesitant to do another 6 months but I’m glad we camped one more year with Zeke.
It was an extreme mix of romance and back break that year. Jonah entered an alternative program to get a high school diploma a year early and he was gone all day Monday through Friday. I was down a hand, had a new baby, the gardens were cranking, I was prepping the house at least once a week for guests plus Nonchalant had a weekly farmer’s market and was making cheeseboards for private events. I was clean and elegant and ragged and threadbare day by day.
One thing was for sure. Down time was precious and it would be used for down time and down time only. I would sit in the grass and pick buttercups with Zeke, I would bury his feet in the sand at the lake, I would bathe him in a metal wash tub and we would read chunky board books every day.
It became apparent that I needed to streamline life. Four kids is a lot and two farms is a lot and most often less is more, and changes were inevitable.
I signed a lease on a house on Meadowburn. Despite giving up camp life, it was a strategic step in remaining free spirited forever. Contrary to popular perception, it takes a lot of dedication to be a free spirit otherwise you end up trapped by negligence, far from free or spirited
XX. The circus (part 1)
Zeke learned to clap at the circus. He clapped with such gusto that he passed out during intermission and slept through the second half of the show.
We were given free tickets to the show through my oldest son Jonah’s school. In fact, the school held a pizza party for students and family the same night, so we got dinner and a show. It may sound simplistic but we were giddy and lighthearted and grateful for the night out.
The Big Apple Circus practices at the local fairgrounds and performs here before opening day at Lincoln Center. Looking around the audience I realized that they must give out many free tickets, we were surrounded by adults with disabilities who clearly came with professional caregivers.
The circus has a long history of inclusion, for better or worse. Some would argue that historically, circuses exploited the disabled; others would argue they provided work and family and a more meaningful life at a time when the alternative was institutionalization.
The evening brought to mind my childhood obsession with a 1932 film by Tod Browning titled Freaks. I don’t know how my adult self would feel about the film, but I still sometimes chant “We accept her! We accept her! One of us! One of us!” which is the only scene I can recall.
There were a few seniors with DS in the audience and I couldn’t help but wonder about their lives. In searching for information about DS from mothers with adult children, I came across many stories of women who gave birth prior to the 1970s who were coerced to give their children up to institutions at birth. Were these individuals sitting around me the last of the institutionalized or the pioneers of inclusion? I could only guess.
XXI. The circus (part 2)
There were also a number of people whose disability was much less distinguishable. I think about that sometimes. People forget that there are any number of injuries and illnesses that can permanently alter one’s capacities. No one is safe, not your child or you or your spouse. The human body is fragile and susceptible. Life is literally vulnerability.
I watched an elderly woman with DS reach over and smack her caregiver seemingly unprovoked. I know from my reading that people with DS are more prone to dementia and it’s knowing that Zeke will likely outlive me that has me extremely interested in adult care. It has me more passionate than ever in my belief in healthcare, including care for mental health, for everyone regardless of income or geography.
Every time I hear someone mention “luck” in regards to health care, specifically their insurance plan, I think “There it is! Right there!” I’ve been on both sides of the insurance coin... covered and uncovered and I can say with certainty that it has nothing to do with hard work and everything to do with luck, and I find that incomprehensible.
Zeke has a binder, a really big binder, chock full of paperwork. We came home from the hospital with an overstuffed folder but it multiplied as we spent the first four months of his life on hold listening to elevator music with various agencies and driving across the county for appointments to sit in waiting rooms.
As far as special needs go, DS is convenient in the sense that it is widely recognized as a disability and easily proven. So many disabilities are not so cut and dry and many individuals fall through the cracks just because they’re not easily identifiable as “eligible.”
A farmer’s income, however, is anything but cut and dry. Monthly income... which month? Yearly income... which year? Household income... ugh.... for the last two years Jonah’s been working full time and Esmé’s been working part time, having teens really sways that number. Assets... the applications had me acutely aware that farming is a glorified gambling addiction.
XXII. I get to keep this one close
Zeke sat at 6 months, right on time again... almost. You know that toppling stage when they’ve almost got it and then... tip! He stayed there for a really long time. This is when I saw the timeline start to stretch. That’s the way I visualize it. He does and will continue to do what other babies do, but his timeline is stretched out, particularly those in between stages.
It’s lovely. I kid you not. Other babies grow in the blink of an eye, their timeline is so easy to miss and impossible to hold on to. Now that I have Zeke, other kids feel ridiculously hyper accelerated.
Even though I need to plan for his future differently than his siblings’, mostly I just feel really grateful that I get to keep this one close. When we’re dancing to his preferred playlist of George Benson, Al Green and Marvin Gaye, I am only thinking about how lucky I am to have a dance partner for life and how frick’n cute we’ll be on the dance floor when I’m an old lady.
He’s been taking steps for a couple of months now, trading in his perfected and speedy butt scoot for toddling. Even though he’s turning 2 and I got an extra year before he walked, it’s still bittersweet.
XXIII. Semantics, semantics
Before she left the hospital the day of Zeke’s birth my midwife said “I think... stay off the internet, maybe? I just don’t want you to get scared.”
The welcome basket presented by the social worker contained a book and I figured that would be the place to start, but it was immediately frustrating.
I may have skipped around in it, bypassing the expected “What is DS?” introductory chapter. I knew already that DS means that there are three rather than two of the twenty-first chromosome. I knew already that the extra chromosome usually comes from the egg. (When we explained DS to the kids they immediately asked if Zeke is more me or more Bill... I don’t think I would have ever thought of it in those terms but... I sort of like it.)
The first thing I came across in the book felt like an etiquette lecture. Do say this, don’t say that... it’s Down Syndrome not Down’s syndrome and don’t say Down’s baby say baby with Down’s.
I picked up my phone and scrolled through my sent texts to see what horrible infractions I had unknowingly typed. There were none. I was safe.
Shouldn’t this be the last chapter? Could this really be what I need to be worrying about right now?
The first piece of practical advice I came across was to not read anything written before 1990 because it would be outdated. The first memoir I read was published in 1999, but chronicled the pregnancy of a baby with DS in the late 1980s. It was full of the “r word” and I found it strangely comforting.
Talking about Zeke having DS or trisomy21 feels like hanging his karyotype on the wall rather than his portrait. I wish there was a common use word we could agree on. I feel that we eliminated the “r word” but not necessarily the connotation of it. It feels more semantic or symbolic than triumphant.
Regardless, I am outnumbered. The word causes offense and I don’t use it. It’s not hard.
Hi my name is Jess, my preferred pronouns are she, her, hers. I have a son named Zeke, his preferred pronouns are unknown. He loves tractors, floral prints and baby dolls. Until he tells us otherwise, we are using he, him, his and... Down Syndrome.
XXIV. Out of diapers already
The phrase “elimination communication” traveled around my first circle of mom friends. Gag me. Could you come up with more pretentious terminology?
Despite bristling at the language, I adopted the practice. At least I think I did, I never actually read the books. What I did was offer my babies the option of using the toilet at a young age, starting around four months. Each of them gladly accepted the opportunity, giving up pooping in diapers almost immediately, being daytime diaper free by 12 months and dry overnight by 18 months.
Zeke still has the occasional accident but his experience brings to mind my mother’s retelling of my own experience... My preschool cubby always had a change of clothes. I knew I needed to go, I was just way too busy to stop what I was doing. Last minute syndrome.
Of all the developmental delays associated with DS, the only one on the list of potentials that concerned me was toilet training. Mobility, speech, fine but not toilet training. Weird, right?
The thing is, elimination communication started making sense, at least the communication part. The reward was not one less diaper to wash, the reward was this nonverbal communication with an infant. It’s like making music with someone or dancing or dare I say like making love, it’s anticipating the needs of someone you are partnered with.
The kids quickly realized that every time they got peed on they had thought “I should take him to pee.” Without fail. It was never a surprise, it was followed with “Ugh.... I knew it.” That’s some serious motivation to tap into that mysterious channel of language.
Zeke is still short on words. He signs like all of my babies did but unlike the others, he adopts his own and teaches us. He’s made signs for so cute, tractor, so strong, and oh my goodness. When he first started using the sign for potty it was apparent that he didn’t understand the meaning and seemed to use it at random until I realized that he used it for our dog, not potty but Spotty. Within a week he had altered his Spotty sign, making it clearly distinguishable from potty. Basically, he’s a genius... but still we need to up our signing game.
XXV. Hashtags had me flummoxed
Stay off the internet was good advice during our NICU stay but naturally I began searching when we got home. My social media accounts filled with babies with feeding tubes, babies with surgical scars, babies undergoing chemo, babies all labeled brave. I was more grateful than ever but wrecked by guilt for feeling spared. I wanted to unfollow all the hashtags but I couldn’t turn my back on those moms and babies.
I found government websites about DS for every English speaking country. It’s fascinating to see the subtle differences in flavor and attitude. England is dry. Ireland, warm. Canada, sweet Canada is the land of the hopeful... their website had a list of FAQ each answered by a person with DS in a short video clip. Here, you take the mic, tell us about yourselves.
We watched lots of videos of people with DS. They vary as widely as the rest of us, each just as gifted. I remember telling Sigh that DS didn’t actually change anything and I meant it wholeheartedly. Nothing about our dreams for Zeke were made unattainable by DS. He may even have a leg up on the live simply, be happy, stay kind plan.
Hashtags had me flummoxed. I didn’t want to attach DS tags to Zeke’s photos. I never include asthma, ingrown toenail, or orthodontics in the other kids’ captions. I also thought it wasn’t a way to connect to a broader audience, it’s only how you find other people who already love someone with DS. I didn’t want his photos to be part of some agenda other than hey, look at this cutie! But here we are.
I do think about the women with prenatal diagnoses who are looking for info on these platforms and I have made one really sweet connection myself... a mama with a little girl with DS just two months older than Zeke living right here in my town. I sent her a message about a year ago and we’ve been meeting for play dates ever since. The only thing cuter than a baby with DS is two babies with DS.
About nine months into my weeding through the literature, a friend stopped by with a gem of a book. She handed it over with reluctance and apology in advance. It had come her way through the mother of a grown woman with DS.
I was stoked.
XXVI. Parents as their kids’ best therapists
I said “with reluctance and apology in advance” because even a glimpse of the book reveals that it is of the vintage I’d been warned about.
The thing is, that granted me a permission the others did not. I could dive into this one with no apprehension and no self doubt. It would be easy to dismiss disagreeances without another thought. I could engage with this one as a simple curiosity, judgement free. I would not scrutinize it and more importantly, I would not feel it scrutinize me.
It is grossly outdated. The author is aware of the chromosomal abnormality in DS but believes that it is not present at conception and is a result of prenatal brain injury. He names cigarettes, hamburgers and Coca-Cola as suspected culprits.
Reading through this piece of time travel, I was delighted to find treasure after treasure. A different kind of substance and meaningfulness I was not finding elsewhere. This was sustenance worth weeding for.
I did dismiss the vast majority of it. I find it contradicts itself even, like he hasn’t quite committed to the revolution he is himself promoting, but it offers perspective... an awareness that we only know what we know right now.
It was the last book I read in my quest for some... something, I didn’t know what. It was everything I needed.
The author travels to Philadelphia in 1962 to observe the practices of The Institutes for the Achievement of Human Potential run by a man named Glenn Doman.
Of his first day there, he writes: “I learn that Glenn Doman is having a love affair. Not with another woman — he has fallen in love with parents. This is amazing indeed. The medical world has a tradition that the doctor and the parents are enemies, or at least divided by attitudes. I hear professionals say that parents are stupid; you cannot believe a word they say. But now I hear Glenn say, ‘These people are absolutely great! Look how bright they are... They are the best therapists in the world for their own kids.’”
Hallelujah! A theory without undertones of my ineptitude. Can we please praise the capabilities of the disabled and the instinctive capabilities of their parents?
XXVII. Zeke as his own best advocate
Zeke is the ultimate DIY-er. I don’t know where he came by that ;)
The very first book I read described children with DS as manipulative. I don’t think we’d even left the NICU yet. I had an innocent babe and decided the book was rubbish but Zeke’s second year of life had me thinking maybe I should revisit that chapter. Manipulative is not the word that comes to mind. Zeke is, however, the most determined, willful and demanding child I have birthed. There is absolutely no distracting him and he will not be persuaded to give up or try again later.
I always thought of my kids as tagalongs. I did stuff and they tagged along. This system does not satisfy Zeke. He needs to be in the mix, hands on. He’s a pass-along. Meaning, he’s exhausted his caregiver within 20 minutes and will need to be passed along to someone whose patience reserves are less depleted.
Zeke is not growing up in the suburbs with a flat fenced yard. Every day he encounters large animals, machinery, barbed wire, a wood fired oven.... a world both beautiful and hazardous. He’s been rejecting the backpack. He wants down! Now! I taught him to “tuck in” on demand. He curls his arms in to his body, fists to chest signaling “I won’t touch it.” Then good solid eye contact to ensure “I promise.” Just please let me see it, I promise I won’t touch it.
It’s extremely challenging – and comforting. He’s wreaked havoc on our nonchalance but I feel confident that he’s going to advocate for himself, demanding attention, and really, what more could I want... An audience to listen, that’s the more that I want. Maybe my job as Zeke’s mama is to get the audience to pay attention. Thank you for paying attention.
Clark’s writing has been slightly condensed. Find her musings on family and farming along with the original posts about Zeke here.