Tag Archives: Self-care

Just Breathe

Re-posted from March 6, 2014

“I took a deep breath and listened to the old brag of my heart.
I am, I am, I am.”

Sylvia Plath

There’s a stillness that descends on the hospital late at night, softening the harshness of bright lights and the sterility of hard floors. Sounds are muted and voices are hushed. Sydney is the only patient in the sleep lab tonight located at the end of a long, empty corridor. It’s dark in her room but for a night light and the glowing dots of the medical devices she’s hooked up to. I shift uncomfortably in the reclining chair next to her bed and wonder how I’ll make it until morning. It occurs to me that my father-in-law spent more nights this way than I can count during the fourteen months of my mother-in-law’s battle with cancer. It also occurs to me that the last time I sat in the dark next to a hospital bed was with him, the night before she died.

But here and now, Sydney is well. We’re only here one night, for a sleep study. Multi-colored wires trailing from the electrodes glued to her head are gathered in a rainbow ponytail and plugged into a large unit sitting on the bed next to her pillow. A smaller unit is strapped to her chest emitting various cords that coil and disappear under the blankets, connected to her legs and other body parts. The tubing for the cannula in her nose and a sensor that protrudes over her mouth like a tiny microphone tucks behind her ears and tightens under her chin. More sensors are taped to her face at her cheeks, temples and chin. It’s an alarming sight if you don’t know what you’re looking at.

My girl knows the drill, though, having undergone sleep studies in the past, the last when she was seven. She put up very little resistance then. Now, as a fourteen-year-old, she may have protested a little more, but overall, she succumbed to the awkward and uncomfortable preparation for the test without complaint, this ever-accommodating child. While I can’t imagine being able to drift off while rigged up like this, Sydney is sleeping the peaceful sleep of the innocent as cameras and monitors record her CO2 and oxygen levels, her heart rhythm and other vitals, as well as her gross motor movements. She’s my good sleeper, always going down easy and sleeping through the night.

Sydney at seven

Her first sleep study was when she was just a week old. Sydney came exactly on her due date and though we had no suspicions of Down syndrome, her birth wasn’t without incident. Labor came hard and fast, but since she was my third, I stubbornly paced at home awhile and insisted on taking a bath and shaving my legs before I let Steven convince me to make the 30 minute drive to the hospital. I guess I pushed it too far because once there, frenetic activity ensued and nothing much went according to the beautiful birth plan I’d created, including the epidural I requested. In between painful contractions I noticed a conversation between nurse and doctor and sensed some concern. When a neonatologist showed up, I knew something wasn’t right. In my delirium I heard talk of meconium. Before I could make sense of it, she was here and I caught a brief glimpse as the doctor handed her to a nurse who whisked her quickly away to a warmer. She seemed blue and for a few terrifying moments it was silent. There were no cries from my newborn, no talking from the medical personnel huddled around my daughter, and no words from my husband.

“Was she blue?  She looked blue to me. Didn’t she look blue to you?  Is she breathing?!” My questions came at him, one after the next.

Face hidden behind the surgical mask, Steven’s eyes conveyed thinly veiled panic as they widened and followed our baby across the room in response to my questions.

I later learned she was under fetal stress, meconium was present and they didn’t want her to breathe before her lungs were suctioned to be sure she wouldn’t aspirate. It seemed interminable, but after a few moments, she took her first breath and pinked up. Relief flooded my body as I reached for my baby with a primal instinct. A kind neonatal nurse, Leann (I’ll never forget her), brought Sydney to me, but gently told me she had to go to the neo-natal intensive care unit.

“We’re not what you expect,” she’d said as she patiently eased my baby from my reluctant grasp.

Sydney spent 14 days in the NICU. About halfway through Steven noticed her stop breathing intermittently. He watched her intently for hours as she lay in her isolette connected to a pulse ox, heart monitor, central line, oxygen, IVs and various tubes and wires. He saw her little chest rise and fall, then pause. Nothing. Stillness. Several seconds would pass before she took another breath.  Because of her daddy’s vigilance, Sydney was found to have sleep apnea and she went home on a monitor.

In newborns sleep apnea is an underdeveloped neurological issue in which the brain fails to signal the body to breathe. The monitor is a safeguard, set to alarm when no breathing is registered for an interval of 20 seconds. Adhesive electrodes stuck to the bare skin of Sydney’s chest were attached to lead wires that plugged into a bulky metal box. Not to be disconnected except during bathing, we lugged that thing everywhere for nine months.

Inconvenient?  Sure, but the reassurance was worth it. I had always checked my babies’ breathing when they slept, feeling for the whispers of air moving in and out of their tiny nostrils. Sometimes they were so still I’d wonder, “Are they alive?” and nudge them, relieved only when they moved grudgingly in response. With Sydney, the monitor was my 24/7 electronic sentry, always on duty.

Once off the monitor, we didn’t worry about her central nervous system regulating her breathing, but we did look for obstructive sleep apnea—not uncommon with Down syndrome—where a variety of factors contribute to air flow blockage. Like tonsils. Sydney’s are enormous and though not chronically infected, they nearly close off her throat when she sleeps. Recently, snoring, gagging, and even lapses in her breathing warranted another sleep study.

“Why do I have to stay at the hospital, Mom?” she asked me earlier today as we packed her pillow and blanket along with her iPad.

“The doctor wants to watch you sleep. So we can see you breathing.”

Now, I look at my slumbering little teenage daughter across the darkened room. When she fills her lungs, I can see her breathing. When she snores, I can hear her breathing.  But I can’t actually see her breath, the air that moves in and out of her body. How fragile this invisible, delicate stream, and yet, how powerful. The physical exchange of oxygen for carbon dioxide is miraculous in and of itself. We are purified and nourished in every moment, taking in what we need, releasing what we do not. But more than the mere breath itself, there’s a universal energy that flows like a river through the landscape of the body and through all creation, connecting us with everything that breathes, the very force that animates the inanimate.

In all wisdom traditions of the world, the breath is sacred. In Sanskrit, prana, the original life source. In Native American culture, the Divine Breath, the divine spirit in all living things. In Christianity, God’s breath of life, breathed into man’s nostrils by the Divine. In Buddhism and Taoism, Mindful Breath, the path to enlightenment. In Hebrew, the Nephesh or soul, an animated, breathing, conscious and living being. In Sufism, breath is the source which keeps body and mind alive, body and mind connected.

Our constant companion from birth to death, breath is there . . .  until it is not.

I witnessed Sydney take her first breath and come fully into this world as a living being. I also witnessed my mother-in-law take her last breath and quietly ease out of the physical world. The thought fills me with a rush of profound awe and deep gratitude. Life is incredibly valuable. A gift in every moment. Every breath.

“Just breathe, Lisa,” I think, closing my eyes and turning my focus inward.

{Inhale}

{Exhale}

{Inhale}

{Exhale}

My mind quiets and I am bathed in stillness. It is here I come to commune with the sacred. Here, I connect to the source which unites all life. It is here, I find everything I need.

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Filed under Childbirth, Down syndrome, Family, Gratitude, Letting Go, Loss, Motherhood, Parenting, Special Needs

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. Cradled maternally by my mattress, I’ve slept so hard the sheets have left deep creases on my skin. My consciousness attempts the swim  through layers of fog; “What day is it?”  “Where, exactly, am I?” With great effort, I roll over and squint, reading the digital numbers on the bedside clock: 8:29 a.m. The house is quiet; no one’s up yet.  And I remember: there is nowhere we have to be! Two months into summer vacation and today is our first free day — no camp, no summer school, no nothin’. I sink back under the delicious covers. In a few minutes Sydney and Haley will be ransacking the kitchen, eating peanut butter out of a jar and reheating chicken nuggets for breakfast. But I don’t care.

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. Late afternoons, especially, once I am horizontal, I’m gone. People who nap are lazy, I used to think. Back then 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.

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’re 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?” they ask.  And we cave, letting them snuggle up as we read a story, fighting to keep our eyes open, but four hours later we wake with a start, fully clothed and drooling.  Or worse, we let them into our bed. But 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. Bliss descends. For about 5 minutes.

What follows can’t really be called sleep; collapsing into a coma only to be startled 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, they thrash and turn, 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 from his own bed. 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 not-so-clean 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 the master bed as “Mommy’s bed” and frequently hit me up to fill the vacancy.

“Can I sleep with you tonight?”

“No, Daddy is sleeping with me. In his bed.”

I should be grateful that only 50 percent 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 was never easy; putting up the good fight at bedtime and waking hyper or cranky. He ran on two speeds: turbo-charged or out. Constant ear infections caused him to wail in pain for hours, always in the middle of the night. I remember rocking him, both of us drifting off just as the sun came up. He never learned how to get to sleep by himself and for years, though he’d start out in his own bed, morning would find him on the floor next to my side of the bed.  I stepped on him more than once.

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.

But see, I need to count on my children being unconscious for some amount of time during each 24-hour cycle.  With a child like Haley, there is no such 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 sometimes she just climbs in over us; jostling the whole bed and wiggling her way to the middle. A few times she walked in and  flipped on the overhead light.

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, a reward for making it through the day, helps me unwind. But the cycle sometimes leads 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 a 5:30 a.m. class, sacrificing the extra Zs so I can meditate and prepare, unhurried and in peace. I stay up late, until 2:00 or 3:00 a.m. to write, because the house is quiet then and I am, at last, alone.

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. Trust me.”

I’m still tired. I fall asleep at rock concerts, stop lights and in front of the TV; I nod off at movies, kids’ concerts and even weddings; I pass out while reading before bed, my book slipping out of my hands, reading glasses still on, mouth open. I half-wake to my husband as he tenderly takes my book and glasses, and placing a kiss on my cheek, turns off the light.

I’m still tired, but not all the time. I start most days feeling energetic and hopeful, though the demands of our busy family leave me running on empty by afternoon.  It’s just the way of it. This is my life; the one I chose and the one I love. Haley said it best: “In the morning you’re ‘Happy Mommy.’ In the evening you’re ‘Tired Mommy’ because we accidentally exhaust you.”

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 it only takes 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

Big Rocks

I ran out of time. For a year I intended to write about turning 50 – a contemplative, insightful piece extoling the wisdom gained from living for half a century, but 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.

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, particularly in the form of text messages, demand instant responses, & idk if we r betr 4 it.

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 (‘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; 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.  I was running out of time.

In the midst of it all, Sydney had, as a result of a sleep study and the subsequent diagnosis of obstructive sleep apnea (common in kids with Down syndrome), a tonsillectomy, and was spending the week recovering at home. Before surgery, she charmed the staff with her smiles and snappy come-backs, but afterward, my brave girl was miserable and understandably, a bit grumpy.  We stuck to an alternating 3 hour dosing of Tylenol and Motrin to keep the pain at bay.  Armed with popsicles and ice cream and soup 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 and 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, but 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.  She wanted to talk.  To me.

“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 to compose an email.   “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 am I 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; open Word documents, several tabs on the web browser, iTunes with my playlists for teaching, an unfinished email to Sydney’s teacher.  And my calendar.  Always my calendar.

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.”

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

“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 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.

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

“No, I’m fine,” Sydney said, matter-of-factly.

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 15 seconds.

“Mom? Excuse me.”

Like clockwork.

“Wow,” I said, taking a deep breath.   Patience, Lisa.  “You sure are talking a lot today.  Doesn’t that hurt your throat?”

“No-oo!” she answered emphatically.  “I just . . . , I just have tonsil breath,” she stammered, referring to the unfortunate halitosis following a tonsillectomy.

Her voice, from behind, carried recognition; she knew what she was doing, but couldn’t stop herself.  I didn’t catch the rest of what she said; 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.

Tapped, no restraint remaining, I interjected, “And . . .  you’re driving me CRA-zy.”

An offhand remark, casual, yet careless, it stung with more bite than was intended.  But I didn’t know that yet.  I went on with my work for a minute before a subtle energy permeated my unraveling focus.  I felt more than heard something and turned around.

Grimacing with silent sobs, Sydney bent over her pudding, shoving bite after bite in her mouth until it overflowed.  She inhaled sharply and coughed.  Snot billowed from her nose until her face was a mass of chocolatey mucus.

“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.

When she could talk, she said softly, “I get it, Mom.”  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 that 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 . . . ,” she paused, “And . . .  and . . . and I just really . . . “

I waited, my attention fully–and finally–and 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, and wiped fresh tears from her eyes.  Lifting her head with a slow inhalation, she looked to see if I was watching, then choked out the words, “but, I . . . just . . . NEED . . .  you!”   And with that, she abandoned her fight to hold back the tide of her emotions.

Remorse hit me like a wave.  My heart broke open wide. The tightness in my chest loosened and slid away as I gathered her in my arms.  She buried her gooey face in my belly and 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.  With maturity comes the recognition that when I’m drained by overdoing, I lack what she needs from me; it’s just not there. I can’t make it materialize.  Conclusion: In order to take care of Sydney, I need to take care of myself.

The overdoing has to stop.  This I know.  How I to change it, I have not known.  But perhaps the analogy of sand, pebbles and rocks in a glass jar illustrates how.  My time – a finite amount – is represented by the glass jar; the sand, pebbles and rocks are all the many, many things that fill that time, ranging from smallest to biggest.  Fill the jar starting with the sand and only a few big rocks will fit.  But reverse the order and miraculously, everything slips into place.  It becomes clear to me: if the big rocks are gonna fit, they must go in first.

My fatal flaw? Everything has been a big rock; I’ve missed the distinction between size and texture and value.  But now I know it just ain’t so.  Obviously, Sydney is a bona fide big rock along with my other children and my husband.  But, what about me?   Is it possible to forgo some sand and pebbles to make room for a big rock of my own?  I don’t know whose permission I’ve been waiting for.  Who’s jar is it, anyway?  In my 50th year, these shifting perceptions and realigning priorities influence my choices more than external expectations.  The voice I’m attuning to now comes from within – not without – 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.”  Since it is my jar, I get to decide what’s more, and less, important.  If worry about 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.  I’m sure she was thinking, ‘Mom is shoving me off again.’

I added, “With me?” and a smile lit up her face as 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

Let It Go

Before moving to Columbia, Missouri, spring break meant a week off school to hang around the house and catch up on projects. I soon learned this is not the case in the Midwest.  In CoMo, it’s ‘hasta la vista, baby,’ and everybody gets outta dodge. Headed to prime vacation destinations like Florida and Mexico (the country, not the city in Missourah, population 11,543), people lay out the big bucks.  And they take their kids with them.

For eight years I didn’t get it.  An Arizona girl transplanted to Texas, I never felt the need to migrate to warmer climates; I already lived there. But, by adopting the Show-Me state as my new home, I’ve been reacquainted with the seasons, and after this particular year – the year of the interminable winter in which the world descended into an icy kind of hell, a frozen apocalypse with subzero temperatures, biting winds, ice storms and snow day upon snow day upon snow day – I got it.

“I’m so cold!  I haven’t been warm in months,” I said to my friend Jane in Phoenix, who at that moment was sitting on her patio shaded by palm trees, enjoying a perfect 75 degrees. “I can’t wait to feel the sun on my face again.”

I pictured myself lying on soft sand, nearly lifeless, basking in the golden rays like a reptile sunning on a rock.

“You’re going to be gone how long?” she asked.

“Nine days.  Granted, it’s four long days of driving, but five full days of camping right across from the beach.  South Padre, baby.  Kicking back at the KOA!”

In my mind’s eye I can see us in our little home away from home: a green sturdy mat to cover the ground outside the trailer, an awning to create a cozy space lined with Little Japanese lanterns that cast a soft glow, music resonating from outdoor speakers. The girls riding their bikes. Steven at the grill, searing steaks, enjoying a beer.  Me, reclined in a comfy camping chair, feet up, wine glass in hand.

“All I’m going to do is relax.”  I said, “And, Steven’s taking his kayak so he can fish.  It’ll be so good for him.”

A nature lover, my husband is most at peace on a lake, river or ocean, casting his reel.  It’s his meditation, his sacred communion.

“And it’ll be good for you.”  Jane said.  “You guys both need this after everything you’ve been through.”

Stress is a buzzword that’s become cliché in our fast-paced culture, but ‘this’ year has been even more intense for us than normal.  A lot of travel, the girls’ medical and educational issues, my job, Steven’s job, our new grandbaby’s heart surgery . . .  well, nothing has been routine for awhile.

And then there’s Mom’s death.

“It’s been six months already,” I said, disbelief in my voice.

Our grief cycles as we learn to live without her; it’s been hard, but more and more the sadness is imbued with vitality and getting away to enjoy each other is a significant part of that healing process.

“So, we’re going,” I exclaimed.  “All the way to the coast!”

Jane celebrated with me over the phone, “I’m happy for you guys.  You really deserve this.”

Steven brought the RV out of hibernation, cleaning and repairing and stocking, and making sure his 4WD truck was tow-worthy.  Ever the über-boyscout, my mate impresses me with his thoroughness, making lists and spending hours following through with his plans which this time included detailed preparations for salt water fishing.  He loaded his kayak atop the roof of the Super Duty.  Protruding over the hood, the end rested on a carrier attached at the grill, forming a visor that framed our view as we headed south on a 1,200 mile trek in search of fun in the sun.

Everyone in their places, we drove; over 22 hours, but we made it, full of anticipation and ready for anything.  Anything, except what we got.

After all that, the weather did not hold up its end of the bargain.   In fact, the elements conspired to create the antithesis of perfect weather. Warm temperatures were nowhere to be found; we wore jeans instead of shorts and jackets rather than short sleeves.  At night every blanket was put to use until we broke down and turned on the heat.  All day, the sun hid, obliterated by cloud-cover, casting a gloomy pall.  Thunderstorms shook the trailer and gales of wind blew day and night, snatching the door out of our hands and slamming it against the side of the RV, whipping up everything in its path, even extinguishing the flame on the BBQ grill.  We retracted the awning and stayed inside.

We were not happy campers.

On the morning of the fourth day, I lay in bed listening to the sound of a downpour – rain dancing with tap shoes on the roof of the trailer – and had a conversation with the petulant teenager who lives inside me.

‘Let it go, Lisa.  You’re ruining your own vacation.’

‘But, this isn’t the vacation I ordered.  This is not the vacation I NEEDED!’

‘The girls are handling it better than you.’

They were such troopers.  Sydney’s ability to go with the flow has always amazed me.  And even Haley wasn’t complaining, finding other things to do.  But hanging out inside our RV wasn’t what we planned.

‘This weather sucks. This totally sucks.’

‘You’re still spending time together as a family.’

‘Three miles shy of Mexico, for the love of Mike!  We came all this way to get out of the cold.’

‘Lisa, shhhhhh.  Let it go.’

Cue music: the infamous melody from Frozen rang through my brain, “Let it go!  Let it go!”  a counter to my stubborn argument. Tenacity and perseverance have gotten me a long way, but this time, a white-knuckled grip on my expectations was not serving me well.

Later that day we passed the time browsing a few touristy gift shops with their shelves of souvenir shot glasses and cheap jewelry, bins of shells and painted starfish and rows of campy T-shirts and hats.

Haley hollered at me a few aisles over, “Mom, look!”

Rounding the corner, she held up a shirt, excited to show me the writing on the front.

“Read it!” she insisted, grinning ear to ear like a little Cheshire cat.

So I read.

God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

Yep.  That’s what it said.

Haley beamed at me as if she’d discovered the meaning of life (and maybe she had).  “I’ve never seen this on a shirt before.  Isn’t that cool?” she asked.

Pretty cool,” I said.

Um, hello?  A personal message from the universe, you think?  Let. It. Go.

I looked at the past few days through this lens.  I didn’t lounge lazily in the hammock like I wanted, but I did cuddle up with my girls to watch movies.  I didn’t play catch with Sydney using those little Velcro mitts, but we did play Candy Land and Go Fish, much to her delight.  Steven and Haley didn’t take their father-daughter fishing excursion (in fact, Dad’s kayak never even touched the water), but, on a nature walk they did find a fantastic creature called a sea hare.  And as a family, we ate delicious seafood at a very cute restaurant on the pier, (while wearing pirate hats), and visited Allison at the Sea Turtle Rescue and Rehabilitation Center, an old sea turtle with only one fin, who wears a prosthesis and stars in a documentary.

Then, on the last day, the clouds evaporated and the glorious sun shone bright, warming the air as the winds calmed.  The spring break paradise we’d been longing for suddenly materialized.  Gathering our gear post haste, we headed to the beach and I lay supine in the sun, eyes closed, drinking in the radiant heat, reptilian instincts satisfied.  Haley surfed on her boogie board, Sydney dug in the sand and Steven combed the beach.  Bittersweet.  We finally got a taste of what we came for.

“Mom, I don’t want to leave,” Haley said.  “The sun just came out.”

Sydney said, “But, I miss my friends.”

I understood the sentiments of both my girls.  Incredibly grateful for one gorgeous day, I was, nonetheless, disappointed that we didn’t have more.  But, I had finally let it go and was ready to go home.

I’m recovering now, adjusting to the discrepancy between what was hoped for and what was.  As I contemplate my resistance to (okay, my utter rejection of) accepting the things I could not change, I had to wonder why was I so terribly disheartened?  Life happens; C’est la vie and all that, right?  But, there was too much riding on the trip; it absolutely had be renewing and rejuvenating.  Desperate for rest, we knew it would be a long time before we could commit this kind of time, money and effort to another lengthy sabbatical.

The life lesson comes in not only leaning into the acceptance piece, but embracing the courage piece; the courage to change the things I can.  Moving forward, I can create time and space in my busy life for recreation before the need becomes critical.  I can infuse my daily routine with all the good things life has to offer, seizing opportunities for joy whenever they present themselves – who said I have to wait?   Using my hard-won wisdom, I can sort out the difference.  I can have . . .  Serenity Now!

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The Long Haul

Photo by Randee McClung

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, and Sydney throws herself over his back. Jeremy and Carly cluster around him and everyone is talking at once. I walk toward them, unnoticed. He 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.

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.

In the commotion, I weave my way through the kids to 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.”

 

 
 
 
 
 
 
 
 
 

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Name Them One By One

 

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Giving thanks for abundance is greater than abundance itself.   ~ Rumi

I love Thanksgiving. It’s Christmas without the endless to-do list. Don’t get me wrong, I’m all about the tree-decorating, light-hanging, mall-shopping, card-sending, present-wrapping, stocking-stuffing frenzy, it’s just I’m usually in a coma by the time the work is done. Visions of sugarplums dancing in my head are often trumped by exhaustion. But, gathering for one day with family and friends, pausing the frenetic doing to simply give thanks for our cornucopia of blessings? Nothing could be better.

I grew up in the Mormon Church. Sunday mornings found my family sitting on long wooden pews in the midst of a large congregation. My favorite part of church by far was the music. Raised by musicians, I’ve been singing since I could talk. From an early age lifting my voice in a joyful noise has been a wholly (holy), trans-formative experience. Although I no longer subscribe to the religion of my youth, the songs from childhood still sing to me. Hymns in 4/4 time still evoke the visceral memory of breathing in the Old Spice emanating from my father’s freshly-shaven jaw, his neck encircled by a white collared shirt and tie. No matter the season he wore a full suit. I’d lean my head against his strong shoulder, the fabric rough on my cheek, his solidity my fortress. In that place, I was rooted. A lifetime later, the melodies trigger deeply embedded emotions, both poignant and comforting.

One hymn in particular plays in my mind this time of year. A rousing favorite, written at the turn of the century, Count Your Blessings is a lively tune that bounces along with words of advice to rival any ‘keep-your-chin-up’ Disney song sung by cute little animals. The message is emphasized by a dramatic ritardando (slowing) and fermata (hold) at the end – ‘name them one . . by . . one . . .’ – and brought home with a snappy happily ever after- ‘count your many blessings see what God hath done.’ The simple but profound truth rings clear: hope is possible, even in the darkest of times, through gratitude.

The world is in pain. People are suffering on levels I have never known and most likely, never will. War rages the globe over. Innocents are killed. Cities are destroyed. Brutal terrorist attacks in Beirut and Baghdad, suicide bombers in Paris, Syrian refugees with nowhere to call home; despair is rampant. Homelessness, poverty and domestic violence crush the human spirit. In my comparatively safe and prosperous life, lamenting hardships feels selfish and insensitive. Yet, adversity is a human experience, no matter our circumstances.

Viktor Frankl, author of Man’s Search for Meaning, said, “… a man’s suffering is similar to the behavior of gas. If a certain quantity of gas is pumped into an empty chamber, it will fill the chamber completely and evenly, no matter how big the chamber. Thus suffering completely fills the human soul and conscious mind, no matter whether the suffering is great or little. Therefore the “size” of human suffering is absolutely relative.”

It’s been four months since my mother died.  I’ve been told the all firsts are difficult, and this Thanksgiving may be particularly hard for me. Mom didn’t have an easy life and towards the end of her 71 years, she experienced more pain than joy, and more loss than fulfillment. But she taught me that being free of suffering isn’t the point. Life is a journey of contrasts: heartaches and frustration, contentment and bliss, and to be human is to feel all of it. Viktor Frankl also said, “The meaning of life is to give life meaning.” Even as we suffer, finding what is good and right and redeeming – that is our salvation. Shining a light on our blessings warms the cold night and illuminates the dark.

My mom started a family tradition around the Thanksgiving table. Holding hands, each person takes a turn to name what they’re grateful for. Both light-hearted and poignant, through laughter and tears, our abundance becomes brilliantly clear with each link in the chain.

Today, I count my blessings out loud. Holding hands with all the world, I take my turn.

I’m thankful for the aroma of coffee that greets me, just roused from sleep. For the radiance of the full moon in a dark sky at 5:00 am, the world utterly still and hushed. For the clean bite of cold air drawn into my lungs and the vapor as I breathe out.

I’m thankful for my hands; their age spots, like a tree’s rings telling the story of years spent holding and touching. For feet that carry me, moving ever forward. For the rush of endorphins surging through my bloodstream during exercise, my heart a steady drum, beating the never-ending rhythm: I’m alive, I’m alive, I’m alive.

I’m thankful for my mind; my intellect, and the ability to reason. For my sense of humor and the personality that’s uniquely me. And for maturity and evolution, that I’ve traveled the roads bringing me where I am today.

I’m thankful for money enough to pay our bills. For water and electricity, for heat in the winter and air conditioning in the summer, for appliances and furniture and clothes. For insurance and medical care and pharmaceuticals. For technology that makes life easier and more fun. For reliable transportation that won’t leave me stranded. For a full tank of gas.
I’m thankful for connections that reach across distances; a Facebook message from my son, a sweet text from my daughter, a phone call from my best friend far away. For the love of my parents and brothers and sisters spread all over the country. For plane tickets. For cheesy peas and cinnamon rolls made from my mother’s recipes. For tradition.

I’m thankful for the million things money can’t buy, for a mother who loved me ferociously and without restraint, who remains a part of me I cannot separate, and whose lilting voice I hear in my head. For my mother-in-law, gone two years now, and the memories of her unconditional love and acceptance that live on. For my grandson and his new brother coming very soon. For daughters-in-law and gay marriage. For divine love in the universe that I believe will prevail over conflict. Because it must.

I’m thankful for the companionship of my husband, the sudden belly laughs he provokes, and his arms that wrap me up; a fortress. For the sweet sound of my daughters’ voices, singing loudly from the back seat as I angle the rear-view mirror to glimpse their faces. For their clingy bed-time hugs as I tuck them in. For the words, “I love you, Mama.”

I’m thankful for the glorious sun as I turn my face up, eyes closed, to catch its rays. For our home – the place we go out from and come back to, for the sustenance we find in that shelter, our basic needs met and nourished. For a meal waiting at the end of a long day; for the contentment of belonging to each other.

I’m thankful for my pillow and the bed that cradles my body, formed by the years I’ve slept there, my husband by my side. For the warmth of his calf as my foot finds him. For his arm that instinctively draws me close. As I go to sleep, I’m thankful for one more day to draw breath.

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Joyride

red convertibleThe secret of life is enjoying the passage of time.

Any fool can do it; there ain’t nothing to it.

Nobody knows how we got to the top of the hill.

But since we’re on our way down,

We might as well enjoy the ride.

Sliding down, gliding down, try not to try too hard.

It’s just a lovely ride.

James Taylor—The Secret ‘O Life

I don’t always recognize I’m headed for collapse until, speeding down the freeway at 100 mph, dashboard warnings flashing, I veer off the road to make an emergency stop. I’ve gotten so good at disregarding my maintenance lights, by the time I realize I’m in trouble, I’m already sputtering and careening; out of gas, overheated, or worse, out of control, crashing and taking out everyone around me.

When we moved from Missouri back to Austin, Texas in 2003, circumstances combined to create a fusion of indescribable stress that will go down in Kent family history as The-Time-Which-Must-Not-Be-Named.   Every member of our family was a hot mess; Haley, 5 weeks old, a textbook example of a colicky infant, emitted a type of banshee wailing that could literally wake the dead, and was silenced only when nursing (constantly) or sleeping (rarely).  Sydney, 4 years old, with modulating sensory integration issues, experienced overstimulation, auditorily and otherwise. She was confused and jealous.  Her ‘elopement’ was at an all-time high and, thanks to a very ambitious preschool teacher, potty training had begun in earnest (it took two years to fully train our sweetie and it wasn’t the potty that was so much the problem).  Let that image crystallize for a moment: Clingy, wailing infant on the boob and pooping-in-her-britches toddler on the run.

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