Category Archives: Parenting

November 12, 2014 · 5:52 pm

Becoming

I love teenagers. I do. Everything about them: the awkward, the self-conscious, even the angry bits. I’m especially intrigued by the way they shed their childhood like a skin and emerge a newer, older version of themselves. I even kind of love parenting teenagers. I know–it sounds nuts, but I feel I hit my stride as a mom when my kids hit double digits.

My babies slathered me with sloppy, open-mouthed kisses and clung to me like monkeys with their dimpled fingers; their miniature selves extensions of my body, not quite separate. Pressing them, sweet smelling and downy to my chest, was intoxicating. It comforted me as much as them. But there was the sleep-deprivation and the crying and the poop. So much poop. Not my fave.

My toddlers left sticky handprints on the walls, dropping crumbs in their wake and careening clumsily through our days, insisting loudly, “No, I do it!” Mini-tyrants, they asserted their independence and in conquering their world, dominated mine. Adorable to grandmotherly types who no longer dealt with blow out tantrums and whole gallons of spilt milk. Pass.

My preschoolers asked thousands of questions starting with “Why . . . ?” Insatiably curious, they chased sensory input with the sole purpose of soaking up knowledge . . . and destroying my house. Their constant motion and boundless energy siphoned me dry. Plus, the requisite mommy activities filled me with dread: crafting was code for a special sort of hell surrounded by Elmer’s glue, paper plates, and a million tiny beads. Not my best skill set.

In elementary school, baby-fat gave way to long legs as my kids morphed into capable young people with new skills and talents. They lived large and played hard and the noise threshold hovered around ear shattering, leaving me slightly deaf and functionally catatonic. No thanks.

By pre-pubescence, mysterious internal stirrings accompanied outward signs of impending change. On the cusp of a developmental leap, my children remained child-ish, but their sense of savvy and street smarts emerged. Thinking for themselves and testing limits, their personalities started taking shape and I enjoyed their unique brand of humor and conversation. All in all, a delightful stage, except for the hygiene: showers, toothpaste and clean underwear — not even on their radar. Getting closer.

With full-on adolescence, things got much more complicated; the physical work of parenting shifted dramatically to mental stress and strain. I expected the hormonal mood swings, the acne, the shocking growth spurts and voice changes, but I did not foresee that while their bodies mimicked adulthood and their psyches masked a false bravado, their brains — and hearts — remained immature and thus vulnerable. They were babies in grownup bodies, but I loved being with them. My goal was to keep them talking. I believed that communication was key to navigating the rough waters of parent-teen relationships and in my book, we succeeded. They felt safe enough to come to me with anything. Well, ‘aaaal-most anything.’ This according to my husband.

Don’t get me wrong, it was no nirvana, and I will state for the record, sometimes it was God-awful. I was certain we’d be swept under by those rapids, but we made it. And over the years, the intensity has faded — ironically, not unlike labor pains — and what lingers are gratifying memories of my older children becoming the smart, funny, compassionate and talented individuals they are today. With the age difference in our kids, it’s two down, two to go.

Now Sydney, 15, the older of the second batch, traverses the current. At schedule pick-up walking the halls of the high school, crowded with teenagers a full head taller than my petite daughter, I follow behind, watching her stride confidently down the corridor. I feel an acute sense of poignancy so sharp it’s almost painful: my girl, who happens to have Down syndrome, is a freshman.

While it’s true that many people with intellectual disabilities will retain child-like qualities, they do mature mentally, physically and emotionally. Sydney initially resisted the changes to her body. “I don’t want to become a woman!” she cried. But with the onset of her cycle, she’s embracing her new place among the women in our family and wants to share the news. With her trademark lack of self-consciousness and social decorum, she makes random comments — in public, no less. “I’m wearing a new bra!” and “Me and Mom are growing boobs. We’re boob twins.”

Sydney is intuitively aware of her disability and how she fits into social manueverings. As a cheerleader, she has an opportunity to ‘belong,’ but her success depends on me going to practice with her. I learn the routines and then teach them to her; practicing over and over and over. I’ve not always been cheer-ful about doing it. More than once I thought it was too much, for both of us. However, I also know she’s competent — she can do it, I’ve seen her! Despite the sighing and the tears, it’s worth it to see her achieve, on her own merit. Besides, she looks darling in her uniform.

Raising kids requires discernment about when to protect and when to prod, when to hold back and when to let go. With special needs kids, it’s easy to err on the side of caution and unintentionally block their progress. Sometimes we just need to get out of the way.

Like hatchling chicks, adolescents gain strength by breaking through their shells, earning a resilience they’ll need to live on their own. In many ways Sydney is a normal 15-year-old who loves YouTube and shopping and Taylor Swift and pizza parties. A teenager who rolls her eyes and says, “Mom, you’re ‘bare-assing me!” Who wants a phone and her own room. And a boy friend.

Being a mom to teenagers is the ultimate exercise in frustration, but I kinda love it. Sydney has begun the trek to independence and her sister, our last, is not far behind.

A few nights ago, Haley, age 11, came out of her room sobbing, during the scarce quiet time between the girls’ bedtime and our own. From my seat on the couch I watched her make a beeline to my husband, Steven, who stood in the kitchen. She wrapped her arms around his waist and buried her face in his belly.

“What’s the matter, love?” Daddy asked. “Did you have a bad dream?”

She cried and mumbled something incoherently.

“Sweetie, I can’t understand you,” he said, bending over and untangling her from his torso.

Pulling her head back and wiping her nose on his shirt, she took a deep breath and wailed, “I’m crying but I don’t … know … why!” and collapsed into fresh sobs.

He rubbed her back sympathetically, but looked to me helplessly, raising his eyebrows and shrugging his shoulders as if to say, “Um, what do I do with this?”

“Come here,” I said soothingly and stretched my arm out. She settled into my lap, curling into my body as I stroked her hair. “Chickadee, I know exactly how you feel.”

Some things, we don’t grow out of.

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Filed under Adolescence, Aging, Babies, Down syndrome, Family, Gratitude, Growing Up, Memories, Motherhood, Parenting, Special Needs

Tagged as adolescence, belonging, Daughter, Down syndrome, Family, growing up, high school, Life, middle school, motherhood, parenting, puberty, special needs, teenager

August 27, 2014 · 10:40 pm

And Miles To Go Before I Sleep

It’s morning and I awake, not to an alarm, but to bright sunlight streaming through a crack in my door. I’ve slept so deeply, cradled maternally by my mattress, that the sheets left deep creases on my skin. My consciousness attempts the swim upward through layers of fog. “What day is it?,” I wonder. “Where, exactly, am I?”

With great effort, I roll over and read the digital numbers on the bedside clock: 8:29 a.m. The house is quiet, no one up yet. And then I remember. Two months into summer vacation and today is our first free day — no camp, no summer school, no nothin.’ In a few minutes Sydney and Haley will ransack the kitchen, eating peanut butter out of a jar and reheating chicken nuggets for breakfast like wild monkeys. But I do not care and sink back under the delicious covers.

Child-rearing and chronic fatigue go hand in hand, like hot wings and heartburn.

I love my bed and I’m not ashamed to admit it. Just the thought of my comfy pillow-top soothes my strung-out mind. This bed knows the contour of my body and calls to me seductively, “Lisa, come lie down.” And I do. Whenever possible. In the late afternoon, especially, once I am horizontal, I’m out. “People who nap are lazy,” I used to think, back when I was judgmental and more than a little pious. Back then I had yet to become a mother.

Almost 30 years later, I can’t remember the last time I felt rested. Child-rearing and chronic fatigue go hand in hand, like hot wings and heartburn. As a new mom, sleep-deprivation on the level of Chinese water torture started when my first adorable but very loud newborn arrived and immediately took all nocturnal activities hostage. My initial resistance to being jolted out of an altered state turned to incredulity when I started to realize I would be sleep-walking through life long after 3:00 a.m. feedings ceased. The epiphany was driven home after it was too late, after I chose to have more kids at an “advanced maternal age,” thus clinching the deal: I’ll rest when I’m dead.

I can’t remember the last time I felt rested.

Facing this reality is much like processing grief. It comes in five stages: denial, anger, bargaining, depression and, finally, defeat. I mean, acceptance. The stages aren’t always in that order and some resurface frequently. Like bargaining. Especially bargaining. We all know one should never negotiate with terrorists, even if they are tiny.

But in our defense, they’ve worn my husband and I down over the decades, reducing us to desperate acts committed in exhaustion-induced delirium. “Will you lie down with me?” our children beg with big innocent eyes. And we cave, letting them snuggle as we read a story, fighting to keep our eyes open. Then we wake with a start four hours later, fully clothed and drooling. Or worse (much worse), we let them into our bed. That, my friends, is a trap. All angelic with the gossamer eyelashes and the delicate skin, they curl up close, their soft breathing rhythmic and hypnotic. They lure us in and lull us to sleep in the sweetest of embraces. Pure bliss. For about 5 minutes.

The family bed is a myth.

What follows can’t really be called sleep, collapsing into a coma only to be jolted awake by a sharp knee in the shin or a sudden slap across the face. Through the night, they migrate across the bed’s surface, rooting like baby pigs, thrashing and turning, never still for more than a few moments. Heat-seeking, their little feet reach for the nearest body part. The broad expanse of Daddy’s back makes a good target, right between the shoulder blades. By morning, the bed resembles a war zone, the blankets wadded and twisted or in a heap on the floor.

The family bed is a myth. It’s actually more like musical beds. At some point the willingness to do anything for a good night’s sleep overtakes good judgment. Dad often is exiled and, gone in search of a place to land, he ends up downstairs in the guest bed, or on the couch, or in a bunk bed, wedged up against the wall, his 6’3” frame contorting to fit — or not — the twin mattress with twin-sized blanket and the twin sheet that slides over the protective plastic liner. My poor husband is a character from Dr. Seuss’ One Fish, Two Fish, Red Fish, Blue Fish. “Who am I? My name is Ned. I do not like my little bed. This is not good. This is not right. My feet stick out of bed all night.”

He’s been displaced so often the girls refer to our bed as “Mommy’s bed” and frequently hit me up to fill the assumed vacancy.

There’s no going back; parenting is a long-term gig.

I should be grateful that only 50% of my children are difficult sleepers. In each of the two sets, there is one good sleeper. Of the first batch, Melissa was the one, sleeping like a dream and waking up happy and contented. Jeremy, not so much. He put up the good fight at bedtime and woke either hyper or cranky. Constant ear infections caused him to wail in pain for hours. We’d rock all night, both of us drifting off just as the sun came up.

With this second round of kiddos, Sydney’s the piece of cake. The cliché that kids with Down syndrome are good sleepers is true. As a baby she would lean out of my arms and reach toward her crib at nap time. As a teenager she says, “I’m tired. I’m ready for bed, Mom,” and down she goes. Mornings start with a hug and a shy smile and flow from there. Easy.

Haley couldn’t be more opposite. Bedtime drags on interminably: She’s thirsty, her head (throat, foot, bottom) hurts, she doesn’t have the right pillow, she’s too hot, too cold, her nose is stuffed up. She can’t sleep. She can’t stop thinking. She’s excited, she’s sad, she’s needy. “Mommy, I want you,” she says, reaching her arms out, fingers clutching. “I haven’t spent any time with you!” Steven calls her a little tick. Even after she’s down, when cannot count on the respite. She comes stealthily into our room, appearing suddenly at my bedside, her hand like a woodpecker tapping my shoulder. “I had a bad dream,” she whispers loudly. Or she climbs in over us, jostling the bed, worming her way to the middle, and diving between us.

You’re going to be tired for a while.

Though our older children eventually grew out of sleep disturbances, my weariness remained; the cause merely shifted. Teething and nightmares and the sudden onset of stomach flu at 1 a.m. morphed into loud music and late-night phone conversations and the unbidden images of worst-case scenarios 30 minutes past curfew. Anxiety and stress and overwhelm continued to plague my dreams as they became adults and headed into the wide world. Now, they’re having babies of their own; more worry to steal my sleep. There’s no going back; parenting is a long-term gig.

Coffee is my salvation in the morning and a glass of wine in the evening is my reward for making it through the day, but the cycle can lead to insomnia, the most maddening affliction. When the children are finally sleeping, I lie wide awake, completely and utterly spent, yet unable to let go. And if I’m perfectly honest, there is, as well, the self-induced lack of sleep, the time I carve out of my repose, because, by damn, I must have some to myself! I set my alarm for 4:00 a.m. to teach 5:30 a.m. classes, sacrificing the extra Zs so I can meditate and prepare, unhurried and in peace. I stay up until 2:00 or 3:00 a.m. to write, because the house is quiet then and I am, at last, alone.

This is my life. The one I chose. The one I love.

The other day I ran across my old journals from the mid to late-80s. Steven pulled down a few dusty boxes from the attic and as I paged through entries written by my much younger self, I was intrigued, as if observing someone else’s life. The narrative was passionate with a tendency for the dramatic and the words that emerged repeatedly were, “tired,” “exhausted,” “overwhelmed.” If I could, I would say to that young woman, “Honey, you’re going to be tired for a while – it comes with the job – but you’ll be all right. Take really good care of yourself. It’s crucial if you are to go the distance. Rest when you can. Take naps. It’s not lazy! And remember the love. It will see you through. Sometimes, you’ll just be tired. And that’s okay. It will all be worth it.”

And it is, even though I’m still tired, falling asleep at rock concerts, stop lights and in front of the TV. Nodding off at movies, kids’ concerts and even at weddings. I pass out while reading before bed, mouth open, glasses on, and half-wake to my husband tenderly taking my book off my chest, my glasses off my face and, after placing a kiss on my cheek, turning off the light. I’m still tired, but I start most days feeling energetic and hopeful. The demands of our busy family leave me running on empty by afternoon and it’s just the way of it. This is my life. The one I chose. The one I love.

It will be worth it.

Haley said it best: “In the morning you’re ‘Happy Mommy.’ In the evening you’re ‘Tired Mommy’ because we accidentally exhaust you.” I know the little (and big) people I’ve birthed don’t mean to wear me out, they just need me. Which is an amazing feeling. I’m the mom, and if all it takes is a nap to turn me from Tired Mommy to Happy Mommy, fetch me my pillow.

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Filed under Aging, Babies, Childbirth, Down syndrome, Family, Motherhood, Parenting, Self-Care, Special Needs

Tagged as Aging, Daughter, Down syndrome, Family, motherhood, parenting, Self-care, Sleep, special needs

June 18, 2014 · 10:18 am

Big Rocks

For a year now, I’ve intended to write about turning 50––a contemplative, insightful piece extolling the wisdom gained from living for half a century, but I ran out of time. In a few days I’ll be 51. Gone the way of shoulder pads and stirrup pants, like it or not, the time has passed.

I ran out of time though I’ve tried diligently to slow down my life and clear some space. Simplify, downsize, prioritize; these are my buzz words. Progress is evident, although the perfect balance wherein I fulfill my roles of mother, wife, daughter, sister, friend and instructor, and manage to shave under my arms occasionally . . . this eludes me still.

The other night, my father-in-law, glancing at my Google calendar on my iPhone, its colorful blocks stacked atop, beside and overlapping each other like a patchwork quilt, looked from the screen to my face and said, “You’re too busy.”

This, I know. How to change it, I do not.

“What can I cut, Dad?” I asked, a little desperate, a little exasperated with him since he himself was retired.

Life seems to be speeding up, or perhaps it’s that more life is crammed into a single day. I know my parents’ generation raised their families in a slower time. Compare a rotary phone on the wall, its handset tethered by a 10 foot spiral cord, to a smart phone, handheld and able to, at virtually any time, any place, connect to limitless information . . . and limitless other smart phones. Technology adds convenience, but these instant connections and texts demand instant responses. idk if we r betr 4 it.

The needle on my stress gauge pushed into the red

During the last week of school my moderately frenetic pace kicked up to severely frantic. With routines out of whack, extra activities to manage and preparations for the upcoming summer vacation to make (‘vacation’ is truly a misnomer), the needle on my stress gauge pushed into the red.

With Type-A drive, I tackled numerous projects at once, the way I know best–with sleep deprivation and coffee. The goal was to knock out as many items as quickly as possible. My monkey-mind chanted an endless to-do list like a scrolling marquee across the back of my mind, underneath which ran the panicked thought–I’m running out of time.

In the midst of it all, my daughter Sydney had a tonsillectomy, the result of a sleep study and the subsequent diagnosis of obstructive sleep apnea common in kids with Down syndrome. Before surgery, she charmed the staff with her smiles and snappy comebacks, but afterward, my brave girl was miserable and, understandably, a bit grumpy. We stuck to an alternating three hour dosing of Tylenol and Motrin to keep the pain at bay. Armed with popsicles, ice cream, and mashed potatoes, we told her she could watch as much Disney Channel as she liked.

Since Sydney’s my easy-going kid, stoic, with a high tolerance for discomfort who doesn’t complain often, I figured it would be, for the most part, business as usual. Steven and I arranged our schedules to trade off being home. I anticipated that while she rested I’d be able to toggle between making milkshakes and sending emails.

Uh, yeah. No.

She didn’t really rest. In fact, she was rest-less, never settling for more than 30 minutes at a time. She couldn’t focus on TV, it hurt too much to eat (even ice cream!), and she had no interest in her iPad. Instead, she wanted to talk. To me.

I’m running out of time

“Um, excuse me, Mom?” Sydney asked from the table. “Why my voice is low?”

I answered from my computer without looking. “It’s from your tonsils, remember?” I’d just blended a smoothie to chase a round of medicine, hoping for a few free minutes. “Don’t worry. It won’t last.”

“Why can’t I go to school?” she asked.

“Hmmmm?” I replied, fingers flying over the keys. “School?”

“Why I am not at school?” she repeated.

I could picture her face though my back was to her, eyes opened wide behind purple wire-frames, eyebrows arched high, her mouth frozen in the shape of the last vowel sound she made. She’d asked this question every day, several times a day, for the last week.

“You know why. You tell me, why you aren’t you in school?” I said trying to be patient, though I felt anything but.

“Because I had my tonsils out?” she asked, acting unsure.

But she knew. I’d noticed her strategy of waiting for me to pick up my phone, then immediately starting in with obvious questions to which she knew the answer. The more I needed to concentrate, the more effort she made to divert my attention. And the more she kept me from working, the more annoying it became. In front of me, my iMac displayed the afternoon’s tasks with open Word documents, several tabs on the web browser, iTunes playlists for teaching my group fitness classes, an unfinished email to Sydney’s teacher. And my calendar. Always my calendar.

An endless to-do list like a scrolling marquee

Behind me, my daughter waited for an answer. Realizing it had been several seconds, I turned and looked directly into her eyes. “Yes, honey,” I said firmly, “because you had your tonsils out.”

My compassion stirred when she said, “I just miss my friends, Mom.” Her days were long, her throat hurt and she was lonely.

“I know, sweetie. I’m sorry.” I got up and walked to her, resigned to the conversation for the moment.

“Good job! You drank your whole smoothie!” I said with over-the-top enthusiasm as I took the empty cup to the kitchen sink. She soaked up the praise with a smile and a shy little shrug. “I know you miss your friends, but you’ll see them at yearbook signing, remember?”

She perked visibly at the mention. “Oh, yeah! Yearbook signing. On Thursday, right?”

“Yep. On Thursday.”

She sat without speaking as I rinsed dishes and loaded them into the dishwasher. Though I heard my daughter’s angst, my monkey-mind chattered louder, calculating priorities on my agenda by what was due when. I was running out of time.

“Mom needs to get some work done now, Syd. Okay?” She was quiet. “How about a pudding?”

She nodded.

My monkey-mind chattered louder

“Do you want anything else?” I asked. “I can put on a movie.”

“No, I’m fine,” Sydney’s tone was matter-of-fact.

I registered her disappointment, but I was up against a deadline and the detailed work required focus. I sat down once again and the clacking of the keyboard filled the silence. For fifteen seconds.

“Mom? Excuse me.”

Like clockwork. “Wow,” I said, taking a deep breath. ‘Easy, Lisa,’ I told myself. “You sure are talking a lot today. Doesn’t that hurt your throat?”

“No,” she answered emphatically. “I just . . . I have tonsil breath,” she stammered, referring to the unfortunate halitosis following a tonsillectomy. I didn’t catch the rest of what she said because I was reading the three texts I’d just received. My adrenaline rose as my shoulders tensed up to my ears. And my monkey-mind chanted away. Running. Out. Of. Time.

“I know I’m talking a lot,” Sydney admitted, “I, um . . .”

My restraint tapped, I interjected, “Yes, you are! And you’re driving me CRA-zy.” An offhand remark, it stung with more bite than was intended. But I didn’t know that because I went on with my work. Until, that is, a subtle energy, something I felt more than I heard, permeated my unraveling focus. I turned around to see Sydney, grimacing with silent sobs, bent over her pudding, shoving bite after bite in her mouth until it overflowed. Suddenly, she inhaled sharply and coughed until snot billowed from her nose. Her face was a mass of chocolatey mucus.

My fatal flaw is that I see everything as a big rock

“Oh, honey!” I jumped up and grabbed a Kleenex, wiping her nose and mouth quickly. “Swallow,” I said, holding the straw of her water jug to her mouth. “Breathe,” I directed. She cleared her throat repeatedly then took a shaky breath as she tried to calm herself.

“I get it, Mom,” she said softly, speaking with a wisdom I forget she is capable of. Her words held the implication that she did indeed understand how swamped I was and she was doing her best not to need too much from me.

“I know we have a busy schedule?” she continued, shrugging and turning one palm up as if to say, ‘it is what it is.’ “But,” her small voice quivered, “you’re going to the gym and . . . you’re working . . .” she paused. “And . . . I just really . . . “

I waited, my attention fully––finally––on my daughter.

” . . . miss you.” The last two words came out high-pitched and barely audible. Her chin trembled. She tucked her head down and, reaching her index finger underneath her glasses, wiped fresh tears from her eyes. Lifting her head with a slow inhalation, she looked to see if I was watching, then choked out her final plea. I just . . . NEED . . . you!”

Remorse hit me like a wave and broke my heart wide open. It also loosened the tightness in my chest. I gathered her in my arms and as Sydney buried her gooey face in my belly, we both cried.

In the past I would have castigated myself for being a bad mother. But as an older parent, my compassion extends to myself as well as my child. With maturity comes the recognition that when I’m drained by overdoing, I’m unable to give her what she needs. It’s just not there and I can’t make it materialize. I’ve come to the conclusion that in order to take care of Sydney, I must take care of myself.

No more running out of time for what really matters

This busy-ness has to stop. This I’ve known. How I to change it, I have not. But perhaps Stephen Covey’s analogy of sand and pebbles in a glass jar might give me an idea of how. The jar, a limited container, represents time. Sand and rocks of all sizes are all the many, many ways we spend our time. Fill the jar with the sand first, then pebbles, and only a few big rocks will fit. But reverse the order, starting with the largest and most important items, and miraculously, everything slips into place.

My fatal flaw is that I see everything on my to-do list as a big rock. I’ve missed the distinctions. But now I know it isn’t so. Obviously, Sydney is a bona fide big rock, along with the rest of my children and my husband. But what about me? Is it possible to forgo some sand and pebbles and make room for a big rock of my own? Yes, emphatically, yes. I don’t know whose permission I’ve been waiting for. Who’s jar is it, anyway?

In my 50^th year, these shifting perceptions and realigning priorities have influenced my choices more than external expectations. The voice I’m attuning to now comes more from inside than outside myself.

My friend, Jackie once told me, special-needs mom to special-needs mom: “There is just no way to get it all done, so I have to let some things, the less important things slip.” It seems simple, really. I get to decide what’s more––and less––important. If I focus on the big rocks, the rest can slip. No more running out of time for what really matters.

I untangled from Sydney and pulled back to look at her puffy, reddened eyes. I sighed, smoothing her hair back from her face. Such a precious girl, my daughter.

“Do you want to watch a movie?” I asked.

She looked crestfallen, surely thinking, ‘Mom is shoving me off again.’

“With me?” I added. A smile lit up her face and we headed to the couch.

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Filed under Adolescence, Down syndrome, Enlightenment, Family, Gratitude, Letting Go, Motherhood, Parenting, Self-Care, Special Needs, Stress

Tagged as adolescence, Daughter, Down syndrome, Family, letting go, Life, Love, motherhood, parenting, Self-care, special needs, stress

May 29, 2014 · 5:13 pm

Through Grammy’s Eyes: A Birth Story

Every birth has a story, ripe for the telling, though the tale varies with the perspective of the teller. The closest view belongs to the mother; it is her body, after all, that houses the new life, she who evicts her burgeoning occupant. Spin the lens 180º and it is the father’s story. Once removed from the action, he nonetheless has the most vantage point. Broaden the angle, overlay a generational déjà vu, and it becomes the grandmother’s story. She observes–like the father–from the outside. But she feels–like the mother–from the inside. She is the non-impartial witness.

This birth story, told through the grandmother’s eyes, is mine.

After teaching yoga class in my home of Columbia, Missouri this morning, I notice several voicemails from my son, Jeremy, whose wife is rapidly approaching her due date. I’ve been waiting for his call, prepared to drop everything and head to Oklahoma City for the birth of their first child; my first grandchild.

As I pack with shaking hands, I think how short a time ago it was that I hastily threw clothes in a suitcase in hopes of making it to a hospital in time, then, to say goodbye to my dying mother-in-law. The circle of life, profound in its simplicity, plays out. One life ends and another begins.

It’s 5 p.m. before I get on the road with nearly 500 miles to cover. For at least a few hours, the Bluetooth in my car feeds me the comfort of my mother’s voice from far away as we reminisce about Jeremy’s birth 27 years earlier at which she was present. We share incredulity over our advancing roles: from mother to grandmother, from grandmother to great.

The rest of the night, speeding along the highway, alone in the dark with my thoughts. A grandbaby? Surreal. This grandbaby? Miraculous.

Early in the pregnancy, Jeremy texted me a black and white ultrasound image of a little bean and followed moments later with a phone call.

“Look at that baby!” I squealed upon pickin up.

My exuberance was met with silence on the other end.

When my son found his voice, he choked out the words, “Mom, there might be something wrong with the baby.”

My heart broke from miles away. They were told the pregnancy could terminate at any time. And if it did go to term, there was a high probability of chromosomal abnormalities. Testing would yield more information, but ultimately, there would be no definitive answers until the baby grew. Or didn’t.

We waited. We hoped and waited some more.

Through the second trimester, much to our relief, evidence of the congenital defect diminished. Further testing ruled out Trisomy 13, 18, and 21 and revealed the baby was a boy. They named him Ashton.

As delivery drew closer, it appeared he was in the clear. Except for one small thing: the slight possibility of a heart defect. His parents weren’t worried, but I remained guarded. Perhaps because I knew prenatal tests weren’t always conclusive–my third, “later-in life” child was born with Down syndrome. Or maybe it was my maternal urge to shield them from the shock of an unforeseen diagnosis. Tonight, though, I’m jazzed like a kid on Christmas Eve and all I can think about is getting there before the baby does.

At 12:30 a.m., armed with snacks and an overnight bag, I weave through the deserted teaching hospital to the labor and delivery suite. My son stands by his wife’s bed, though he’s beginning to wear thin after a 12-hour shift as a paramedic. Approaching 36 hours with no sleep, he is not in the best shape for their big event. Carly greets me with a beatific smile. Unfazed, she’s been laboring for nine hours. I wonder if she has a high tolerance for pain or a gift for masking it. Both, I decide.

After unloading, I settle in to watch the monitor as Carly’s contractions, and more concerning, her blood pressure, rise and fall. Jeremy contorts his body onto a small couch. Instantly he’s asleep. Just the two of us now, I sit with my daughter-in-law. We chat and she pauses to breathe through the peaks, closing her eyes and lowering her head, enduring each one with a composure I’m quite sure I never had.

Jeremy wakes and I trade him places. I drift in and out, then wake. Together we wait. We talk, we rest. We wait more. And so it goes through the night until the nurse tells us that after 12 hours dilation has stalled and Pitocin has been prescribed. Carly declines an epidural and my admiration grows as I watch her endure four increasing doses of the drug.

After 15 hours of labor, the last three, unmedicated Pit labor, the pain begins to gnaw at her resolve. I recognize her agitation and resonate with her agony, remembering well the desire to leave my body and escape the pain.

Mothers-in-law walk a tightrope between intrusion and indifference.

As I had a wonderful example, I aim to strike the perfect balance in my new role. Involved, but not over-bearing. Available, but at arms-length. And in childbirth especially, I defer the rightful maternal province at Carly’s side to her own mother.

But now, in the harrowing depths of transition, there is just me. Jeremy, at a loss, looks helplessly on. I move next to Carly’s head and stroke her hair, murmuring softly in her ear. Does she want me here? I don’t know, but in this moment, I will mother her. And in her vulnerability she lets me.

I had no epidural when Jeremy was born and every wrenching seizure ripped through my writhing body. With eyes wild and panicked, I looked not to my husband for help, but to my mother who rubbed my shaking legs and whispered words that lifted me above the pain to another place, allowing my body to do what it was designed for. And each time I slammed back down into the sharpness she eased me up again.

I try to bring the same transcendence to Carly. By her side as she rides each wave, cresting and crashing, I feel her surrender to the suffering. But as her contractions climb, so does her blood pressure. And even still, her cervix remains unchanged. It’s just before dawn and the medication has failed to produce results. As her stamina wanes, discouragement creeps in, and though it isn’t in her birth plan, she agrees to an epidural.

To everyone’s relief, when her pain subsides, she is able to dilate fully. And finally, it’s time to push.

Out in the world, the sun is rising. Inside these walls, the day shift arrives. Medical students ready the room, bringing in equipment and supplies. I tell the kids I’ll wait outside so they can have privacy, but they answer at the same time, “Please stay.”

Their young, amiable doctor strolls in. “Let’s try to have a baby,” he says.

‘Try?’ I think, warily.

He tells us a neonatology team will be on hand when Ashton is born. Another red flag. The baby’s heart?

The room is crowded and I pull back, keeping an eye on the monitors. Contractions are close, and with each one mom’s blood pressure goes up and baby’s heart rate goes down. The easy-going doctor informs them that meconium is present which means the baby could be a little stressed. Casually stationing himself between Carly’s legs he tells her to go ahead and push.

Jeremy doesn’t pick up on the vibe and says excitedly, “Mom, get the camera!” But I hesitate. None of the students are moving. The doc hasn’t fully gowned. There aren’t any lights or sterile drapes on Carly. Something’s not right. Time takes on a rubbery quality yet everything happens very fast.

I’m aware of the descending red numbers of the baby’s heart rate, of Carly, determined, with unwavering trust in her doctor. And of my son, steady, but for just a second, frozen. I step up and urge him to support Carly’s back. Straining with all her strength, she pushes until long after her breath is gone. She pushes so hard her face turns dark purple and my concern skyrockets. Collapsing back onto the pillow, she gathers herself and surges forward again, exerting her whole body to expel the life within. Heroically, she fights to birth her baby.

Watching, I fight tears as my love for her grows exponentially in moments; I have never seen anyone so brave. I fight tears as I’m overcome with pride for my son; he’s become a man before my very eyes.

I fight tears because I know this is not going well.

I watch the doctor watch the monitors. Scanning his face and body language, I observe calmness in his demeanor, but sense the undercurrent of his apprehension. After several pushes, he stops Carly and tells her, with no urgency in his voice, the baby isn’t descending. He’s sunny side up and not tolerating the compression of labor. His heart rate is dropping below 100 with every push, which may be an indication of a heart issue. And Carly’s BP is continuing to spike. For these reasons he’s recommending a C-section, just to be safe.

Carly serenely accepts yet again what she did not plan. More disappointed than frightened, she agrees, though her consent is a formality; to his credit, this young surgeon has kept the critical nature of the situation from alarming Mom and Dad.

Abruptly, med students scatter and nurses converge. Phone calls are made, oxygen is placed over Carly’s nose and mouth, the brakes on her bed are kicked up and the whole apparatus, IVs and all, are wheeled away to surgery, leaving Jeremy and I in the empty room looking after them.

He retreats to the bathroom and I reel, thinking not only of the baby, but of Carly and the stories I’ve heard of hemorrhaging, strokes, and mothers dying in childbirth. I shake my head to ward off these images. I need to be strong for my son.

He moves from the doorway, my 6’0″, 200 lb. boy, and gathers me in his big arms, burying his head. “I don’t know what I’d do if you weren’t here, Mom. I’m so scared.”

He sobs into my neck like he did when he was 5 years old.

“But I’ve got to be strong for Carly,” he says, wiping his eyes with his sleeve. When he gives voice to my own thoughts it releases my tears and we weep together.

We’re interrupted by a nurse who has come to take him to the OR. He shakily dons paper scrubs, and in his rush, shoves his leg inside the pants with his shoe still on. His foot is stuck and he loses his balance. I reach to steady him and, bending down awkwardly, I attempt to dislodge his man-sized shoe. It’s a little ridiculous. And very tender.

He still needs me, even as life demands that he stand on his own.

Now it’s just me. The room seems very big. Time bends again as I wait. An hour? 15 minutes? I can’t tell. But then, my son is here, reassuring me quickly that everything went well. Baby boy is here and mommy is doing fine. Relief washes over me and suddenly, I am bone-tired.

Jeremy tells me he got there just in time to witness his son emerge and take his first breath. Carly, drugged and woozy, saw her newborn briefly as he held Ashton next to her face, but the family bonding was cut short when the nurses whisked the baby to the NICU and the awaiting neonatology team. Yet again, my daughter-in-law had to let go of what she dreamed: no laying her newborn on her chest, no skin-to-skin contact, no examining him from tiny toes to downy head, no photos of her husband holding their son in his first minutes of life.

After surgery, she returns to the room without her infant and is told she needs magnesium for preeclampsia; her blood pressure isn’t coming down. She’ll be bed-ridden and it will be 24 hours before she can see her son.

“Nothing is going the way we planned,” she says wearily, and my heart squeezes for her. I want to tell her I’ve learned that little in life ever does.

But I’ve also learned it’s what we don’t plan that bring us the greatest joy.

On the second day of life, after his mama holds him, I meet my grandson. The NICU nurse lifts the myriad IV lines and wires as Jeremy gently lays the little bundle in my arms. He’ll be here for some time and I couldn’t be more grateful for the excellent reputation of the Oklahoma Children’s Hospital. After a diagnosis of aortic coarctation, Ashton will undergo surgery on his newborn heart, the size of a walnut. While we wait, his very life will be held in the skilled hands of the pediatric cardiac surgeon.

Now, I gaze lovingly at the child of my child. I kiss his feather-soft head and inhale the scent of his skin. He curls his whole hand around my pinky finger, squeezing until his knuckles whiten.

‘I’ve got you, sweetie,’ I whisper, though truthfully, he’s got me. Already wrapped around his little finger. A quiet, yet momentous change is occurring, like the flutter of a butterfly’s wings halfway around the world. Life is no longer the same; I can feel it. For me, for my son. For all of us.

Every birth has many stories, diverging in places depending on the perspective of the teller. But they all return to the moment when a new life enters the world and nothing is ever the same again.

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Filed under Babies, Childbirth, Enlightenment, Family, Grandparents, Marriage, Motherhood, Parenting

Tagged as belonging, Birth, Daughter, Family, growing up, hospital, Life, Love, marriage, Mother, motherhood, parenting, Rebirth, Son, Wife

March 6, 2014 · 10:34 am

The Long Haul

I’m washing up in a restroom at the Oklahoma City airport and for a moment I can’t place my location: hospital? hotel? restaurant? Elegant water faucets and gleaming granite countertops add to my sense of disorientation. I don’t even recognize my own hands. Looking down at the palms rubbing together, the lather foaming, I watch with detachment as water rinses the suds away to reveal age spots and scars. The shrieking of a turbine dryer cuts the air and I’m fascinated and horrified in equal measure by the effects of high-velocity air on crinkly, tissue-paper skin as it undulates against bird bones, exposing skeletal phalanges and large blue veins, tendons as taut as violin strings. These can’t be my hands.

But they are, as are the 50 years it took them to become this weathered. As is this face that looks back at me from the mirror, eyes reddened and tired, cheeks gaunt — succulent youthful flesh gone, hair a bit frizzy. I lean in closer and smooth my makeup. I reapply my lip-gloss and pat down a few errant curls.

“You’re a grandmother,” I think, scrutinizing my reflection.

Two weeks and two days ago my first grandchild was born; the son of my only son. Jeremy and his wife Carly live 7½ hours south of us. This is my second trip down. The first, an urgent drive prompted by the onset of labor was a magical drive through the night, alone with my thoughts. I wasn’t sure I’d make it, but, as it turned out, life threw the kids a few curve balls. From a long and difficult labor to an emergency C-section to a baby in the NICU, nothing went according to plan. They were thrust into an unforeseen reality both frightening and uncertain.

When it became clear the baby wasn’t going home any time soon, I stayed. It wasn’t even a choice; there was nowhere else I could be. My husband, Steven shouldered the domestic load, my colleagues covered at work, and my busy life went on without me.

After ten long days Ashton was diagnosed with a heart defect that required an immediate operation. I went home for a few days to regroup and came back for the surgery. This time, with Steven traveling on business, I took my daughters who still live at home, Sydney, 14, and Haley, 10, out of school and brought them along. On that momentous day, they sat with us in the waiting room. Headphones on, they munched on Cheez-Its and Slim Jims while I kept my hands busy knitting a baby blanket. Thoughts of the pediatric cardiothoracic surgeon operating on a tiny newborn’s heart the size of a walnut raced around my mind. I tried instead to concentrate on the prayers uttered by many to guide those skillful hands.

Time stretched then folded in on itself; surreal, interminable. Then suddenly, the gowned doctor was there and we exhaled in learning Ashton tolerated the delicate procedure beautifully. A full recovery was expected; the new family would be on their way home soon.

Heady with relief, celebratory even, we’ve come to the airport now to pick up my husband; his absence has been felt. With some logistical creativity — a bit of planes, trains and automobiles — we maneuver to get everyone where they need to be. And in the midst, our typical routine churns along demanding attention. A perpetual balancing act, it’s been the norm for a very long time. Making the choice to spread our children out over 18 years has resulted in a parenting marathon.

We have friends in the trenches of young parenthood; their lives filled with diapers, sleepless nights and temper tantrums. Friends running from soccer games to piano lessons, who help with homework and college applications. We meet them at orchestra concerts and cheer practice and neighborhood BBQs.

We have friends in empty nests; their children gone to college or moving away to embark on careers. Friends welcoming new members into their family as their kids get married and have babies of their own. We swap stories about in-laws, the cost of weddings, and the phenomena of boomerang kids.

We don’t, however, have many friends who’re in both, and who consequently experience what I call CPF: chronic parenting fatigue.

Our oldest, Melissa, was a senior in high school when we were pregnant with our youngest, a fact which repulsed her.

“Ew!” she said, “You’re going to be old parents.”

And she was right. We’re kind of old already and we’re not done yet. I often wonder what will be left of us when all the kids are gone? Who will we be by the time we get there? We are not the same people we once were, not the same couple. The idea that marriage is both strengthened by the challenges of family life and crushed under its weight seems a paradox, but it is profoundly true. Steven and I have never stopped loving one another, but this is not to say we always like each other. Stress and exhaustion make us irritable and sometimes we’re just not nice. Everyone else gets the best of us and all that remains for our beloved is the dregs: we are robbed of the person we love most.

Those are the times I miss my sweetheart. I miss the belly laughs his sharp wit never fails to provoke. I miss his pride in my accomplishments, his comfort when I’m melancholy. I miss the pleasure of his company; gourmet dinners and stimulating conversation. I miss the end of the day when our minds unwind and our bodies entangle; when we make space for each other’s innermost thoughts. I miss spontaneous weekend getaways and leisurely lovemaking. I miss his everyday kisses.

Without these things we’re great business partners, roommates and co-parents, but we aren’t the friends and lovers we started out being. Without this spark of intimacy, our day-to-day is reduced to an endless to-do list wearing us down. And out. As Garth sang, we’re “much too young to feel this damned old.” Stepping out of our responsibilities and indulging our love affair is the only way we’re going to see this through.

It’s beautiful to watch our son and daughter-in-law lean together when life necessitates they surrender control; when patience and the ability to set aside their own needs is called for. Faced with this daunting new role, I wonder if our son knows his parents grapple with the same demands and sometimes teeter on the edge themselves. I doubt he knows what’s ahead in the long haul, but I do know the richness will be far greater than he could ever imagine.

I hitch my purse to my shoulder and take one last look in the mirror.

“Not too bad for a grandma,” I surmise and turn to walk out.

Leaving the restroom my eyes cast forward down the long shiny corridor to the baggage claim where the kids have been waiting for Steven. And then I see him. I drink him in like water in the desert.

He bends over to hug Haley. Sydney throws herself over his back. Jeremy and Carly cluster around him. Everyone is talking at once and I walk toward them, unnoticed. My husband looks up over the top of Haley’s head and our eyes meet. I can’t help but smile as my feet lead me steadily to the arms I can feel around me before I get there. Weaving my way through the commotion, I come in closer and stand on my tiptoes.

“Hey, Granddad,” I whisper, brushing my lips against the 5-o’clock shadow on his jaw. “Let’s go see our baby.”

In that moment I love every chaotic, ecstatic, dynamic morsel that makes up our life and it is all wrapped up in this man, inextricably woven into our journey together. He’s my one and only. Eventually, we’ll make it to a tropical paradise or at least to St. Louis for a weekend, but for now, this is all I need.

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Filed under Aging, Babies, Childbirth, Grandparents, Gratitude, Growing Up, Marriage, Motherhood, Parenting

Tagged as Aging, Family, grandparents, Gratitude, growing up, hospital, Husband, Love, marriage, motherhood, parenting, Self-care, Wife

January 7, 2014 · 11:09 pm

Snow Day

I fall for it every time; I get sucked in as soon as the text buzzes on my cell phone, the email lands in my inbox, and the answering machine picks up the recording (no more need to check the scrolling list of school closings at the bottom of the TV screen): “Due to winter weather conditions, school will not be in session tomorrow.”

The kids yelp and run around in circles. “SNOW DAY!!”

Mentally I do a little happy dance as I fantasize about sleeping in and snuggling up. I envision making a big pot of soup and catching an old movie. I love the snow; it’s magical when it falls thickly and blankets the ground. I love it even more when I can stay home. Thoughts of relaxing with my family for an unexpected day in make me all warm and fuzzy.

However … the imagined cozy scene is short-lived. In the morning I’m quickly reminded of how things really go. Haley, my 5th grader, is literally bouncing off the walls; she careens into the kitchen after banging into the doorframe, slides across the tile floor in her socks and wipes out, smacking her elbow on a chair on her way down. She’s wounded and howling.

“Ow, ow, ow! Ouch!! That huuu-UUURT!”

But just a few seconds later she resumes her litany: “I’m awake, I’m awake, I’m awake, I’m awake. The sun is awake so I’m awake.” The refrain continues with a rhythmic accent placed on WAKE.

Coming off of winter break, the girls have already been out of school for 2 weeks. This is our 17^th day of togetherness, but who’s counting?

“It snowed, it snowed, it snowed, it snowed!” Haley twirls around singing, “Later on, we’ll conspire as we dream by the fire! In the meadow we can build a snooooooowwwman.” She stops abruptly. “Hey! We can build a snowman!”

Suddenly she’s pulling her snowsuit over her fleece jammies and stuffing her bare feet in snow boots. “I’m gonna make a snow angel!” Her enthusiasm is boundless, but so is my exhaustion as I watch her dig through the winter gear, flinging coats and hats and gloves far and wide until she finds, at the very bottom, her scarf.

“You haven’t even had breakfast yet,” I say, realizing I haven’t even had coffee yet either. No wonder. “And you haven’t had your pill,” I add. No wonder.

“Come here and just chill.” I call her back to the kitchen.

“I need to chill. I need to chill.” She closes her eyes and repeats the words, slowly this time, as if in meditation, “I need to chill. I need to chill.”

Her eyes snap open, her quest for serenity over. “I need to take a cheeeeeell pill, a cheeeeeell pill, a cheeeeeell pill.”

“Haley, you are a diva,” Sydney says, standing quietly in her bra and boy shorts, watching as her sister cavorts around the kitchen. Sydney is the antithesis of her sibling in personality. Four years older, Syd has Down syndrome which makes her pretty chill by nature.

Smiling, I hold out my hand to Haley. “Here’s your ‘chill’ pill,” I say, her daily Ritalin in my palm.

“No, it’s not,” she says.

“Yes, it is,” I answer.

“No, it’s not,” she quips.

“Yes, it actually is your ‘chill’ pill,” I say, gesturing emphatically with my palm. Why, exactly, am I engaging?

“No, it’s NOT!” she laughs. “It’s my chill and grill pill.” Grabbing it from my palm, she gulps it down with a swig of milk and takes off again, running to the back door. Looking through the glass she says, “Oooh! OOOOOOhhhhhh! Look at the snow! It’s ba-ba-ba-blowing. Look at the drifts, the way the wind moves it and the, . . hey, birdies! Hello birdies!”

She does eventually get outside, dragging Sydney along with her, Sydney who hates the cold and hates the snow and hates being bundled up even more. Wrapping a scarf around her neck, I say, “Honey, it’s really cold out there, you have to cover your skin.” Sydney yanks it off in an uncharacteristic display of defiance, pulling her own hair in the process.

“Oookay,” I concede. “Let’s just zip you all the way up then.”

They waddle outside and around the back to a sweet little sledding track that runs between our house and the neighbor’s. We’re letting them go out by themselves this year, checking occasionally out the window. Assuming that if anyone is screaming or bleeding I’ll hear about it, I feel pretty comfortable taking advantage of the free time to talk on the phone while I take the Christmas tree down.

Removing bulbs of all sizes, I place them gently in their boxes. As I unwind the lights from the branches, my earphone feeds me my sister’s voice from Oregon. I pass by the window and see the girls together, having a blast. I can vaguely hear their shouts and laughter as they slide on plastic discs down the hill. I continue my conversation, thinking all is well until suddenly, Steven comes stomping up from where he’s working downstairs–somewhere with a clear view of the back yard.

“Ha-ley!”

“What now?” I say to my husband.

“Do you need to go?” my sister asks.

“She’s got garden tools!” Steven growls, going around to the front, yelling out the door.

“Haley! Come up here and bring those with you. Right. Now!”

“What’s going on?” I ask him. Then I see. Haley is using large sharp metal tools as walking sticks—or pickaxes—to stab the snow and pull herself up the hill. Sydney, watching from below, holds a sled and looks miserable. She’s done.

Once inside, Sydney sheds her wet clothes in a heap by the front door and disappears. The sound of a laugh track from some Disney show or another emits through her closed door. She’s warm, she’s dry, and on a screen away from her sister. She’s happy.

Haley comes dragging in after returning everything to the garage. Dejected and sad, she says, “Sydney won’t play with me. There’s no one to play with!” For emphasis she adds, “Huummppph,” and tries to fold her arms, but her snow suit is too big.

“I’m bored! Bored, bored, bored.”

Electronics to the rescue. The Kindle Fire Haley got from Santa this year provides amazing opportunities to download books like Robinson Crusoe and David Copperfield. She also plays Candy Crush and Mine Craft, but hey, they stimulate her mind, too, right? Sydney’s had an iPad for a few years now and uses the math and spelling apps, but left to her own devices, she’s either singing along to a music video or filming a DIY cable segment: “How To Make A Cheese Quesadilla.”

It’s true, we’re a high-tech family. We use phones, laptops, tablets and game devices daily. My sister just told me she’s limiting her son’s screen time. I know we should, too. But not today.

Sydney comes out of her bedroom in a daze and opens the fridge. She stands and stares. Then she reaches very slowly inside, her hand outstretched towards the egg carton.

“What are you doing?” I ask.

“I was just, um, just feeling like, um, I just love eggs?”

“Do you want something to eat?” I ask.

“Sure!” Sydney’s eyes glow. Haley talks to fill the time. Sydney eats.

And now the kitchen is breached. They swarm as the food comes out . . . again. The dishes pile up . . . again. I’m bombarded. Both girls talking at once, telling me what they want, what they’re doing, what they want to do, what they’ve just read, what they’re going to read, what they want me to read.

Fragments, words, bits and pieces of sentences float around me. I have lost the ability to form complete thoughts and respond patiently and coherently to my children. Tuning them out has moved beyond a survival skill to a habit.

“Uh-huh.”

“Yeah.”

“What?”

“Right.”

“Really? Wow.”

“That’s awesome.”

An image comes to my mind of the aliens in the movie, Mars Attacks. Upon hearing Slim Whitman’s piercing yodel, they drop to their knees, clutching the clear globes that protect their huge, exposed gray matter. In agony, the creatures writhe on the ground until their pulsing brains explode and green goo coats the inside of their helmets.

Snow ice cream and blanket forts and frozen bubbles. Projects and puzzles and playmates. This is what they need from me and it’s what I just can’t (or won’t?) give them 100% of the time. Part of the reason is probably my age and the fact that I’m just plain wearing out on the mothering front, but it’s also because I’ve never actually loved getting down on the floor with my kids or going to the park or making crafts or baking cookies. And though I’ve spent a fair amount of time feeling guilty over it, I’ve come to terms with it. I know who I am . . . and so do they. Why I was thinking that staying home, confined to my house with my bored, squabbling children was going to be fun, I can only guess.

“Look, look! Mom! Come here, I want you to watch. You have to come here to see.”

Haley has moved to the hallway, incessantly filling the air with words. I glance up.

She’s lying on her back with her legs lifted. “See! I can open and close the door with my FEET!”

“Can you close your mouth with your feet?” Steven, walking through the kitchen, drops the one-liner with perfect timing.

As I’m chuckling at my husband’s quick wit, my text tone sounds.

“Honey, your phone,” he says.

I pick it up, swipe and read:

“Due to winter weather conditions, school will not be in session tomorrow.”

“NOOOoooooo!”

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Filed under ADHD, Christmas, Family, Motherhood, Parenting, Sisterhood, Special Needs

Tagged as Mother, motherhood, parenting, Sisters, snow day

January 4, 2014 · 9:40 pm

Just Like That

Aaaaaaand just like that, Christmas is over. The preparation, the anticipation, the actualization; come and gone for another year. My beautiful live tree adorned in sparkling red and gold is dead, morphed into an endearing Dr. Suess caricature; its pliant needles turned brittle and sharp, its majestic branches drooping sadly, ornaments lowered to the floor in resignation.

But, I’m in no hurry to take it down, even if it is a 10’ fire hazard. I want to sit with it a few more days, turn on the lights and gaze at all the pretty decorations in my house; pretty things that hold pretty memories. The presents have been opened. The food has been devoured. The kids have gone home. But the lights can wait to be wound around plastic spools, the garland to be coiled into plastic tubs and the tree to be hauled out to decompose. I’m not quite ready to let go.

All our children were here this year – the ‘little girls’ who still live under our roof, and the ‘big kids,’ who grew up and left years ago. Melissa and Jeremy were 9 and 7 when I married Steven and we celebrated our first Christmas as a new family. They were 14 and 12 when Sydney was born, her diagnosis of Down syndrome an unexpected turn of events, and 18 and 16 when Haley came along, her very presence an unexpected turn of events. As older sibs, they were a huge help, stepping up to the responsibilities of dealing with their younger sisters’ special needs.

And just like that they’re 28 and 26, bringing their significant others home, growing our family and adding more people to love. Melissa lives, with her partner, Jey, here in Columbia, For now. She didn’t always, and one day she will spread her wings to fly far and wide. But that day has not yet come. Jeremy recently landed in Oklahoma City with his wife, Carly; albeit temporarily. The 450-mile stretch that separates us now is a much smaller distance than the 1300-mile span it used to be. I’m hanging on to every day that they’re close by.

Because of it, we don’t often get Christmases together. It’s been four years since the last so I wanted to make this a big one and the preparations started early.

“Are you sure you want to spend that much on a tree?” my husband asked, checking the price tag on a gorgeous Balsam Fir. He craned his neck to look up, “I’m not sure it’ll even fit.”

“Honey, the kids are coming home,” I reminded him. “I want it to be special.”

Of course he gets it; he shares my inclination to go all out. It’s the same drive that lead him to the roof for 12 hours in 30 degrees, hanging brand-new LED lights, clip by clip as he inched along the gutters and peaks, only once sliding to the edge and nearly plummeting to the ground (thank God for the satellite dish). Tons of work, more than a little frustration, but the result was magical and breathtaking.

The tree went up in the corner of the living room; a few inches lopped off the top left just enough room for a delicate illuminated star. Fragrant evergreen scent, full of promise, permeated the house, We trimmed the tree while listening to Pandora’s “Traditional Holiday” station and took turns identifying the crooners; Bing Crosby, Perry Como, Nat King Cole, Dean Martin. We shopped; at the mall and at our computers. We wrapped and wrapped and wrapped. We got out the good dishes. We baked and we cleaned. We stayed up late and got up early, exhaustion crowding excitement, knowing it would be worth the effort.

And then they were here. Melissa and Jey came from their little house downtown, and Jeremy and Carly drove seven hours on the interstate, stopping regularly because my daughter-in-law is 33 weeks pregnant. Their first, a boy, will arrive shortly before their third anniversary. And just like that, my boy will become a father. 7 lbs. 1 oz. at birth, he now towers over me and swallows me in bear hugs. I can picture him holding his tiny infant son in those arms, just as I held him.

Our time together didn’t disappoint; it was full and rewarding. We told stories. We played games. We ate and then ate some more. We watched ‘Home Alone,’ 1 and 2, the kids reciting the classic line in unison – “Merry Christmas, ya filthy animal.” And ‘Christmas Vacation’ with Chevy Chase, the hilarious spoof of stereotypical holiday foibles; both funny and touching as we recognize ourselves in Clark Griswold, a hard-working family man determined to create the perfect holiday for his clan. We love him for his indomitable spirit in the face of mounting obstacles and catastrophic property damage, and for his vulnerability that reveals itself in the midst of calamity. Locked in the freezing attic, he bundles up in a woman’s fur coat then stumbles across a box of old film reels. Before we know it, he’s projecting black and white movies onto a sheet, frustration and mayhem forgotten. The juxtaposition of a grown man lost in childhood memories, wearing his mother’s turban while a sentimental tear slips down his cheek captures the complexities precisely.

We also watched our own home movies.

“Mom, look. I found some old videos,” Jeremy yelled from the guest room, emerging with a crate of VHS cassettes, my handwriting on the labels: ‘Melissa and Jeremy 1988.’

“Let’s watch ‘em!” He said with his typical enthusiasm.

We dimmed the lights and gathered around the big screen. I loaded the tape into a borrowed VCR. It disappeared, sucked inside with a click. The play button lit up, images sprang to life on the screen and just like that, it was 25 years earlier.

A three-year-old girl in pink sponge rollers eats tortilla chips out of the bag on a couch with her best friend. She wears panties and nothing else, watching King Kong from 1976 with Jessica Lange. She says to her baby brother blocking the TV, “Germ-y, get out-uh-our way!” leaning around him, intent on the images in front of her.

She sits on the floor of a horse stall in her grandpa’s barn. A new litter of puppies was born in the hay and a squirming puppy licks her face as she holds it. Giggling she says, “He likes me!”

A toddler in diapers sports a blond mullet, the back long and curly. He wears top-siders with no socks. In the sunshine he climbs into his Little Tikes car and walks his feet ala Fred Flinstone to make it go. Hands on the wheel, he steers his yellow and red cozy coupe down the sidewalk and off the curb, lodging it against a parked car. He cries in a bitty voice, “Mama, I stuck!”

He holds his hands out to catch a ball and it hits him in the face, bouncing off. Exploding with laughter, he runs to chase it then heaves it back with all his might. Not quite in control, he jumps up and down then trips over his own feet, yelling, “My turn! My turn!”

A young woman in mom jeans, the waistband hiked up under her armpits, bends to speak in a loving voice to her babies. She wears her hair like Dorothy Hamill with a perm. She has clear eyes and a soft face; she is self-conscious and uncomfortable in her own skin.

Time bent. I couldn’t get my bearings as I glanced from the wide screen TV to the kids watching themselves, and to their partners watching their loved ones as children. They’re all laughing and taking delight in the obvious evidence of personalities, even early on.

Melissa was thoughtful and a little shy; content. Her easy-going nature radiated visibly and she smiled easily and often. She was innocent and sweet and unassuming. Her motto was, life is great—I’m happy to be here. She was pure, authentic.

Jeremy couldn’t sit still or stay quiet; his exuberance was uncontainable. He lived large and loud, grabbing on to every moment and demanding attention. Whatever he felt, he expressed. His motto was life is great—what’s next? He was eager, energetic.

Then just like that, my daughter is putting herself through college, returning to school with purpose, pursuing an advanced degree in psychology. She’s an honor student with scholarships and awards, a leader, a camp counselor, a nanny, possessing rare qualities for working with children and teenagers. Babies love her, children flock to her and adolescents confide in her. She’s smart, caring and making a difference in the world. She is pure and authentic.

And just like that, my son is saving lives in his profession as a paramedic. He responds to people’s worst nightmares; accidents and overdoses and violence, guiding them through crises, ministering to body, but also to mind and spirit. His medical skills combined with his compassion make him a calm force and a steady presence. He’s a husband and provider and soon to be a parent. He’s smart, caring and making a difference in the world; he is eager and energetic.

This is how I know it to be: life flies past in a moment. And still, I take it for granted. Still, I assume there will be 25 more years until the realization hits; we don’t know what lies in the days ahead. Just like that things do change. And I am brought up short. I’m in awe of the gift of my family. My family, here, now, together.

We posed in front of the giant tree, me in the middle, surrounded by the ones I love the most: Jeremy with his arm around his wife, Carly holding her beautiful belly and within it, our grandson; Melissa seated in front of her girlfriend, Jey, whose hands were placed gently on her shoulders; the little girls at our feet in their Christmas pjs, and Steven, my partner, my love, standing ever-present behind me.

Just like that it’s 2014. I can’t stop or even slow down time, but I can hold on loosely—I’m not letting go. I can take it all in and savor it and relish it. And I guess I can go ahead and take the tree down.

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Filed under Adolescence, Aging, Babies, Childbirth, Christmas, Down syndrome, Family, Growing Up, Letting Go, Loss, Memories, Motherhood, Parenting, Siblings, Special Needs

Tagged as Aging, Daughter, Down syndrome, Family, growing up, holding on, letting go, Love, motherhood, parenting, siblings

November 28, 2013 · 10:34 am

Square Peg

Sydney tried out for the cheerleading squad.

“Let’s get a little bit rowdy, R-O-W-D-Y!”

In the cafetorium, I watched her audition as she executed the moves and called out the words just liked we’d practiced. She was a bit timid, her eyes sliding to the other girls, following their moves with a slight delay. But she did it! Trying out was all I expected; the outcome didn’t matter. It was the experience of taking a risk and working with a team that counted. I was delighted by her enthusiasm and incredibly proud of her courage. But it didn’t end there; while she didn’t meet the technical requirements, the coach still offered her a spot — as an honorary cheerleader. She was thrilled.

I filled out the paperwork, entered the practice schedule on my calendar and wrote the checks. I didn’t mind forking over $100 plus for gear — frankly, I would have paid whatever it took — but we ran into problems when ordering Sydney’s uniform. Communication, timing and various circumstances combined for an unfortunate result: There would be no team uniform for Sydney. It was suggested she could cheer in shorts and a school T-shirt.

I said no. How could I do that to her? Wearing a uniform is the mark of belonging. I couldn’t put her in front of the whole school in completely different attire. It would defeat the purpose of having her on the team.

My heart sank. She would be so disappointed.

The song “One of These Things” has been on Sesame Street from 1969 through today. The catchy and familiar tune — I’ll bet you’re singing it in your head right now — innocently illustrates the qualification and grouping of objects, teaching a basic lesson in sorting. I’m certain it wasn’t intended to represent the segregation or alienation of people because nowhere is diversity celebrated more than on this endearing and enduring television show where monsters and humans of all colors and sizes populate the community, and kids with special needs are a regular part of the mix. Inclusion was in their script long before it was in the vernacular.

However, I can’t help hearing those lyrics in the context of my daughter when certain situations arise, situations in which it seems painfully obvious she just doesn’t belong. Maybe my sensitivity is heightened because of the perception that disability equals different, and different isn’t always desirable, particularly in junior high school.

Maybe it’s because she’s smart enough to know she’s different, but doesn’t quite know what to do with that knowledge. Most people — kids and grown-ups alike — want to be included. We all have a basic human need to belong. And my budding young woman of a daughter, wanting to fit in, is all too often seen as a crab among starfish. The fact is, much about her is the same as her typically developing peers; her body is changing rapidly, her hormones are in full swing, she’s tired and moody and a little rebellious, she succumbs to academic stress and social anxiety. It’s a confusing time for any kid, let alone a teen who is intellectually challenged. Expecting her to recognize and articulate her feelings is too much pressure. It’s unfair.

“I don’t want to become a woman, Mom,” she says to me, trying to untangle her bra straps. “And I don’t like zits.”

On another day she says, “I’m too big for that car seat,” and climbs over her younger sister’s booster and into the back seat of the van, where she slumps down after buckling herself in. “Can you please turn it up?” she asks, singing along with Zendaya on Radio Disney.

Sydney has been in a tug-of-war with herself the last few years: She wants to grow up, she doesn’t want to grow up. She wants to be independent, she wants to be taken care of. Back and forth. Her internal struggle manifests frequently enough that when my cell phone rings during week days, I brace myself for the probability that it’s the school. “What now?” I think wearily as I catch the call before it goes to voicemail. Attention-seeking behaviors, non-compliance, minor defiance are the usual issues, but recently, Sydney had a pretty big meltdown; uncharacteristic of her and with no observable trigger.

I wasn’t surprised she couldn’t tell us why, but I didn’t doubt for a moment it was no random explosion. While we scratched our heads and wondered what could have caused such an outburst, it really wasn’t that hard to see. On top of her normal adolescent travails, her world was rocked by the loss of MeMe, her beloved grandma who died of cancer mere weeks earlier. Though she can’t grasp the permanence of death, she senses the pain of separation and feels the void absence has left. She worries people will go away and never come back. At a tipping point, Sydney found herself completely overwhelmed emotionally and, unable to cope with it, she lost control. I can’t say I haven’t done the same.

Good people go into education; good people who care and want to make a difference in kids’ lives. Special educators are extra-good folks. Coming from a family of teachers — my sister, my brother, my mother and my aunt taught high school special education, and my grandmother started her career in a one-room schoolhouse — I’ve seen firsthand the impact they can make. I’ve also seen the frustration of good people limited by flawed administration and bound by a convergence of circumstances; budget restrictions or staff shortages or conflicting methodologies. And I’ve seen a handful of people, definitely a minority, who should consider another line of work.

What parent doesn’t want his or her children to have positive experiences in school? To be responsible? To do their best while exploring their talents and abilities? And likewise, who doesn’t hope for excellence in her children’s educational opportunities? We want nothing less for Sydney, but it doesn’t come easy. We have to work for it. That’s our job.

Steven and I learned to navigate the system. We’ve learned about her rights and about Wright’s Law. We’ve learned the alphabet of acronyms: IDEA, Individuals with Disabilities Education Act; FAPE, Free Appropriate Public Education; LRE, Least Restrictive Environment; and IEP, Individualized Education Plan. We’ve learned to do our research and work with her support team, determining how best to serve Sydney and meet her needs. We’ve learned that buzzwords about trending educational models for interaction between children with special needs and their non-disabled peers — words like “mainstreaming” and “integration” and “inclusion” — are often just so much rhetoric, and that giving kids the tools to traverse the world with confidence is less about bureaucracy and more about those individuals who set a course for the stars and teach their students to go after their dreams.

We’ve learned that sometimes things go smoothly, even brilliantly. And sometimes … they don’t. We’ve learned that when it comes to advocating for our kid, we can get a little worked up, but after all, she’s our kid. From the start, Sydney’s dad and I made the decision to open up a world of possibilities to her, regardless of diagnosis and despite what limits others might see when they see Down syndrome instead of a child. We decided to empower her to embrace as much as she could, becoming whatever she could, without pre-determining what she would and wouldn’t be able to do. A large part of that commitment requires guiding her through a minefield of her own making as she learns how to behave, how to cope, how to grow up. It means sticking by her and championing her true potential, even when she slips, and even when the world sees the apparent differences and not the beautiful sameness.

After her incident, she wrote in an apology letter: “I’m definitly trying to do my best . . . . I’m so sorry for the way I overeacted. A little bit. Well a lot. I’ve never did this before. And I’m terrbley sorry.” She signed at the bottom, “Love: Sydney Kay Kent.”

I read the words she’d penciled on white lined paper in her childish but legible handwriting, some scribbled out and others inserted and thought, “Oh, baby girl, I’m the one who’s sorry. I’m sorry for seeing you, if only briefly, as ‘not like the others.’ I’m sorry for losing sight of who you really are and what you are capable of.”

With renewed focus, I went home on a mission. My girl was not going to cheer in shorts, but neither was she going to miss the opportunity to participate with her peers in this classic social ritual. There had to be a way to duplicate the cheerleading uniform. I got online and searched through hundreds of styles, ruling out the closest matches because of the time required for custom orders. Finally I found a stock uniform that was comparable.

With expedited shipping, it got here before the first game. It isn’t identical, but with the same colors and a similar pattern it is close. She might not be just like the others, but she will fit in. She will belong.

Check out this savvy young woman, Megan Bomgaars, another cheerleader who happens to have Down syndrome. She has a spirited message for teachers: Don’t limit me.

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Filed under Adolescence, Down syndrome, Growing Up, Motherhood, Parenting, Special Needs

Tagged as belonging, Daughter, Down syndrome, Family, growing up, letting go, motherhood, parenting, puberty, special needs, teenager

September 3, 2013 · 7:44 pm

Give and Take

You are my love and my life.

You are my inspiration.

Just you and me.

Simple and free.

Baby, you’re everything I’ve ever dreamed of.

Just You And Me by Chicago

“Al, I need ice.”

With a white Styrofoam cup in hand, he bends over and carefully spoons ice chips into her mouth, her lips parched and quivering. A few pieces drop off the plastic utensil onto her collarbone, the skin exposed where the hospital gown has slipped off a bony shoulder.

“You’re not very good at this,” she says weakly. Her breathing is labored and shallow. The effort of reaching for the ice and talking at the same time is too much and she lays her head back on the pillow, exhausted.

“Well, whatcha gonna do?” He replies good-naturedly. “I am all you’ve got.”

Quiet for a few moments, eyes closed and very still, she appears to have fallen asleep. But then, my mother-in-law’s eyes open and she answers irritably, “I’m getting somebody else. You’re fired.”

But, it’s the cancer talking. And the chemo and the side effects and infections that have devastated her body and threatened to defeat her spirit.

As my husband’s father gently wipes away the melted ice, he smiles and croons, “Oh, I’m fired, am I? Okay, babe. But I get to interview my replacement.”

For 50 years they’ve faced life side by side. For better or for worse. In sickness and in health. Strong when the other is weak, optimistic when the other is sad, calm when the other is upset. She is devoted to him and he adores her. Two souls intertwined; theirs is the ultimate love story.

Young lovers can’t begin to imagine what awaits them; that the family born out of their passion will test their resolve and challenge their allegiance, forcing them to redefine love as they know it.

Years ago, when we were young, I married my best friend. It’s a cliché sung about in love songs and easily dismissed, at least until it applies to you. However prosaic it may sound, my husband is my partner, in all things. He is my co-parent in raising our children, he is my intellectual equal, my companion and comforter and confidante. The love of my life. He is my home.

Nonetheless, navigating the constant demands of family life takes a heroic commitment and requires a willingness to place another’s needs above one’s own at times, trusting that it will balance out. Never static, the relationship is fluid, the dynamics ever-changing, and it’s precisely this ebb and flow through seasons of abundance and seasons of bleakness that secures the longevity of a marriage.

Steven and I have been doing this parenting gig for a long time and the truth is we’re tired and we sometimes take it out on each other. It’s a known fact that parenting children with special needs can contribute to higher divorce rates, though interestingly one study found that in families who had children with Down syndrome the divorce rate was actually lower than in families with other birth defects or no identified disability. Predictors of divorce among parents of kids with ADHD, however, showed the divorce rate was nearly twice that of the general population before the child’s age of eight.

So, statistically speaking, Haley’s special needs add more marital stress than Sydney’s. I would concur. Haley brings an energy to our family that is amazing and astounding, but also overwhelming.

Frequently my mind will spiral into panic when tallying what needs to be done, when, how and by whom until I’m convinced that I am doing everything. Resentment poisons my thoughts and I can’t see clearly.

“Are you okay?” Steven asks. “You seem crabby.”

“I’m fine,” I mutter, crabby that he called me crabby.

And when my husband’s frustration mounts, his accumulating stress has nowhere to go but outward. His patience is depleted; he is not pleasant to be around. “Leave Daddy alone,” I tell the girls, giving him a wide berth.

Inevitably in marriage, storms hit. Some hard. Rain falls heavy and saturating until we can no longer buoy the other up. A drowning person cannot save another drowning person. Misunderstandings, unspoken expectations and harsh words flood and we are in danger of being swept apart by the current.

But gratitude is the ballast that holds fast, and forgiveness the rope that leads us safely back to each other, hand over hand.

At the end of long days I reach for my tall husband as he walks into the kitchen and wrap my arms around his waist. It takes only ten seconds to feel the bands around my chest begin to loosen. He rubs my back. I close my eyes and breathe.

Then, I feel Haley dive between us, using her body as a wedge to leverage us apart, making a parent sandwich of herself.

“Group hug!” she yells, her voice ringing through the kitchen.

And . . . the moment is over.

Yet within this chaos of everyday life, our love solidifies into an unbreakable, brilliant diamond; under pressure, the mundane is transformed into the extraordinary.

I watch him from across the room when we’re enjoying the company of friends: the expressions I know so intimately; the way his lips curve up at the corners, showing his gums when he smiles; his eyebrows, animated when he talks, and the dimples that mesmerized me when we first met, still flash when he laughs. Not as young now, but our life is written on his beautiful face.

He stands with one foot on the low rung of a stool, his legs long in slim jeans, sporting a graphic t-shirt and trendy glasses, holding a craft beer in one hand and gesturing with the other as he converses.

I fall in love all over again, but harder. I see not only an attractive man, but a man who fixes my computer, and makes me laugh, and runs through the mud in a Viking helmet with me. I see a father who camps in the backyard with his girls, and teaches them about fish and birds and nature, who strokes their cheeks tenderly with the back of his hand when he puts them to bed; a father who endures long hours, sacrificing his own leisure so he can pay insurance premiums, mortgages and college tuition, who generously provides the good things in life for his family, who gives and gives and gives and gives.

I hear not only his voice, but the clang of a lug wrench on concrete as he replaces the brakes on my car, the rhythm of the washing machine as he does 52 loads of laundry, carefully separating my Lululemon to hang-dry. I hear the soft click of the bedroom door as he tiptoes away on a Sunday morning, letting me sleep.

He feels me staring and turns. “I’ve got you,” I say without speaking when our eyes meet. “I’ve got you,” he answers.

Ours is an ultimate love story. Tested and true, redefining love as we knew it.

Like my parents-in-law.

Love is sleeping on a roll-away bed in a hospital room, an arm’s length from his wife. Love is fighting the battle of a lifetime, with unending courage so she can stay longer with her husband.

“I was supposed to have more time,” she sighs.

“You’re not dying today,” he answers. “Not today.”

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Filed under Aging, Family, Loss, Marriage, Parenting

Tagged as Aging, attachment, Cancer, dying, Family, hospital, Husband, illness, letting go, Love, marriage, stress, Wife

June 10, 2013 · 10:34 pm

Elastigirl

The interesting thing about being a mother is that everyone wants pets, but no one but me cleans the kitty litter.

– Meryl Streep

Haley is playing Jingle Bells on the piano. It’s been less than a week since the girls schlepped their backpacks home stuffed with months of worksheets, book reports quizzes, science projects, a clay pinch-pot (penny holder? soap dish?), and a smashed cupcake from the last-day-of-school party. There are no buses to catch this morning and at 8:00 a.m. they’re still in pj’s. Sydney sits eating at the breakfast table, but her steady, methodical routine is disrupted by the percussive volume coming from the front room.

“Haley!” I yell, “It’s June, for heaven’s sake. Play something else.” Sending the piano stool spinning, she jumps off and comes sliding into the kitchen.

“I’ve got the Power!” she sings loudly, growling the word power and adding a kick and a punch for emphasis.

Dancing around and under my feet as I move from fridge to sink to coffee pot, she belts, “I’ve got the Power! I’ve got the Power! I’ve got the Power! I’ve got the POWER!”

“Ha-ley. You’re annoying me.” Sydney says quietly. “Your . . . singing. You are, you are giving me . . . a headache.”

“I’ve got the Power! I’ve got the Power! I’ve got the Pow-ow-ow-ow-er!” Haley scoots undeterred out of the room. Sydney sighs, placing her palm on her forehead.

In preparation for summer fun with my girls, I cut back my hours at work. My fantasies consisted of less routine and more freedom, less busy-ness and more togetherness, less time spent working and a whole lot more spent playing. But that was before summer actually started. I should know better by now.

Because, truth be told, I am a psychotic mommy; a June Cleaver meets Joan Crawford version of Dr. Jekyll and Mr. Hyde. The fact that only my children are capable of triggering this instantaneous shape-shifting is oddly comforting and disturbing at the same time.

My youngest, in particular, with her brilliant mind and astounding zest for life, pushes my buttons, and is (coincidentally?), like me; multi-dimensional. Living with ADHD, she is challenged by impulsivity, inattention and hyperactivity. While Sydney needs time to process, room for flexibility and a slower pace, her sister needs constant stimulation, a high level of structure and detailed feedback.

Being with Haley is like living inside a pinball machine; a jarring barrage of sounds, words and thoughts. Continually absorbing her environment, what she takes in, she remembers forever after. When she was 5 she said, “I have a camera in my head,” a perfect way to describe her photographic memory. Her brain fires rapidly and her mouth interpolates a running narrative.

“How do you make your own fossil?”

“Is wood a plant?”

“Why do we say 9 ‘oh’ 4 instead of 9 ‘zero’ 4?”

“Who answers the questions that scientists can’t answer.”

Incessant talking, questioning, exploring and exclaiming; Haley is compressed energy.

Sydney tries to interject between the words, but it takes her longer to get her sentences out, “Um, Mom? Mom? Um, am I going to Camp Barnabas on June 17^th?”

“Yes,” I answer for the 700^th time, “you are.”

Sydney is needy for attention because her sister commands it all.

“Haley! Stop! Mom, I didn’t get to talk. She’s talking across me.”

Managing the lives of not one, but two, children with special needs—diametrically opposing needs—has made me the crazy mom I am today.

But, I vow this summer will be different. This summer I don’t want to get angry and turn green, ripping my clothing to shreds. I need a plan. When I’m putting away freshly folded laundry and I find mildewing towels on the bathroom floor piled on top of inside-out clothes, globs of toothpaste on the counter, and a specimen floating in an un-flushed toilet bowl and I feel a familiar chemical reaction, an adrenaline surge through my body, I need to Breeeeeeeathe. I need to Stay. In. Control.

And, how can I make it different? That is the million-dollar question. Being with my kids 24/7 reminds me that there is only one time they drive me nuts, and that’s when I’m with them 24/7.

One strategy is to keep moving. We are booked day after day and frequently into the nights. My Google calendar is colorful with appointments and events and practices and play dates. I can’t stop or even slow, because, at that moment, sensing weakness, they will circle for the kill. My mind repeats, ‘just keep moving, just keep moving.’

Yesterday we made it to swim practice (almost on time), picked up milk, dish soap and a birthday present at the store, had a friend over to play and went to the library. I managed to get dressed, but I think I may have forgotten to brush my teeth.

Realistically, I can’t keep up that pace and honestly, I don’t want to. I crave down-time and I will get it, even if it’s forced on me by exhaustion. They need down-time, too, so scheduling relaxation at the pool seems a perfect strategy. The kids can swim and mommy can lie in the sun; it’s a win-win! However, another mother has messed with my plans this year; Mother Nature.

It’s been a cold, rainy spring in Mid-Missouri but despite the temperatures and weather alerts for thunderstorms, floods, and even a tornado watch, swim team practice has been held. The little troopers sit at the edge of the pool, shivering and hugging themselves; their lips blue, teeth chattering. Yesterday the sun broke through the clouds for 5 glorious minutes, then, a crack of thunder, and down came the rain. Again.

My last and best strategy is to simply let go. Surrender. Give in, but not give up. Flexibility is the mother’s F-word. It feels like a relief to embrace that things won’t go as I’ve planned, and in fact, that’s not what I want anyhow. There’s an elusive truth somewhere in the back of my mind—or heart—waiting to hand me the key to the best summer yet. Like I said, I should know better by now and maybe I actually do.

As I renegotiate my expectations, time for myself mustn’t be excluded, because what I do know is this: ‘neglect my own needs repeatedly, mercilessly and I will crash and burn.’ Prioritizing time alone is worth any effort it takes and my spoiled princesses will learn that everything is not always about them; that their indulged desires need to be balanced with others’ needs. And for me, space from my little darlings can be the difference between Super Mom or Mommy Dearest coming to stay; the difference between me surviving the summer or relishing it. My house might not be clean, but I will be rested and happy and appreciating my children, who won’t ever be this young again.

“Mom, can I borrow your boxing wraps to make something?” Haley asks as I type an email. Because of her tendency to rip through drawers and closets in search of some specific item, leaving destruction in her wake, she has been told and warned and threatened to ask before she commences digging.

“Okay,” I say, not looking up from my computer, “but only one pair.”

She starts to move, and I look at her over my reading glasses, “I will get them for you.”

Sheepishly, she says, “I already got them.”

She lifts her whole leg and sets her heel heavily on the coffee table, revealing a makeshift cast, my white wraps wound and Velcro-ed over her foot, around her ankle and all the way up to her knee.

“I broke my tibula and fibula. Can you show me how to limp?”

Eventually, the sun has to come out, right?

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Filed under ADHD, Down syndrome, Family, Letting Go, Motherhood, Parenting, Special Needs, Stress

Tagged as ADHD, crazy mom, Daughter, Down syndrome, growing up, letting go, motherhood, parenting, sibling rivalry, Sisters, special needs, summer

Category Archives: Parenting

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Child-rearing and chronic fatigue go hand in hand, like hot wings and heartburn.

I can’t remember the last time I felt rested.

The family bed is a myth.

There’s no going back; parenting is a long-term gig.

You’re going to be tired for a while.

This is my life. The one I chose. The one I love.

It will be worth it.

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The needle on my stress gauge pushed into the red

I’m running out of time

An endless to-do list like a scrolling marquee

My monkey-mind chattered louder

My fatal flaw is that I see everything as a big rock

No more running out of time for what really matters

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