Tag Archives: letting go

Just Like That

Melissa

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

Square Peg

photoSydney 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

Making Tear Soup

Tear Soup“Are you going to Colorado tomorrow, Mom?”

Sydney stands in front of the refrigerator and asks the question for the third time this morning.

“No, honey.  Two weeks, remember?  In two weeks.”

I gently nudge her out of the way to open the door and place the milk jug on the top shelf.

“Two weeks. Yes.” She repeats to herself. “So, not tomorrow?” she asks, stepping towards me.

“Nope.  Not tomorrow,” I say, bending around her to put the oatmeal in the cupboard.

“Where’s Dad?” she asks, following me to the sink where I rinse breakfast bowls, our conversation a déjà vu of earlier when I ladled the hot cereal into these same bowls.

“Dad’s at PaPa’s, remember?”

“At PaPa’s?”

Sydney typically wants reiteration of our comings and goings—repeating the schedule outloud makes her feel secure—but lately, she’s been needing extra reassurance that her Dad and I will be around.  Lately . . .  since her grandmother died of leukemia.

“Yes, at PaPa’s house. They’re watching movies and having dinner,” I answer, placing the dishes in the dishwasher.

“Having dinner?”  She echoes.

“Mm-hmmm,” I reply, looking below the sink for the dishwasher detergent.

Sydney clears her throat, then coughs into her elbow.

“Um, Mom?  Is Dad coming home tonight?”

I take a deep breath.  Patience, Lisa.

“No, remember?  Dad’s staying the night to keep PaPa company so he’s not sad and alone.”  I pour soap into the dispenser, shut the lid and press the start button.

“Because MeMe’s dead, right?” she adds.

There it is.  I wipe my hands on a dish towel and come close, bending down to look at her.

“Right, honey. MeMe is dead.”

Her eyebrows shoot up and her eyes open wide.  She pushes her glasses up on the bridge of her nose, sniffs, and tucks the hair behind her ears.  But she doesn’t cry.  She hasn’t cried.

Children grieve differently than adults, and differently from each other. Refamiliarizing myself with the work of Dr. Elizabeth Kübler-Ross, who in 1969 first proposed the five stages of griefdenial, anger, bargaining, depression and acceptance, reminds me that the phases can be in any sequence, intermittent or overlapping, or even skipped altogether. As a parent, I need to help my children with their grief work as well as tend to my own.

Both girls have been a bit stoic—they can’t possibly understand that their lives have changed irrevocably—though I expect when Thanksgiving and Christmas and their birthdays come around, MeMe’s absence will trigger a new level of realization.  And especially with Sydney, I wonder how much she can conceptualize about the permanence of death.  They both loved their grandmother and will undoubtedly miss her, but it’s been concerning to me they don’t seem more upset.

A package from a dear friend arrived like a long distance hug. Tear Soup: A Recipe for Healing After Loss, written by Pat Schweibert is a consoling story of Grandy who, after suffering a big loss sets out to make tear soup from scratch. Haley and I cuddled up on my bed and read how Grandy chose her largest pot to make her soup because she would need plenty of room for all the feelings and tears to stew in over time.

“. . .  she slowly stirred all her precious and not so precious memories into the pot. Grandy winced when she took a sip of the broth.  All she could taste was salt from her teardrops.  It tasted bitter, but she knew this was where she had to start.”

As I read this sweet but profound metaphor, my own tears began to flow.  Haley had voiced sadness, but hadn’t cried yet.

“I want to cry but I can’t.  I feel like my emotions are locked up in a drawer and I can’t find the key,” she confessed precociously.

Page after page, the book poetically and artfully validated the human experience of bereavement.  Paragraph by paragraph, the words described our unique, acute experience of losing MeMe, and as we read, Haley found her tears.  “Tear Soup is helping us cry,” she said, laying her head on my chest, letting her tears fall on my shirt.  Together, we made tear soup of our own.

As I’m putting the girls to bed that night, Haley says, “Mommy, I miss MeMe.”

Matter-of-factly, Sydney says, “We have the same name: Sydney Kay Kent, Linda Kay Kent.”

“Yes, Sydney,” I say.  “You are named after her.”

Haley asks,  “Why aren’t you sad, Sydney?” her chin quivering.

Sydney answered calmly, “Well, I feel a little bit sad.  I heard Mom cry and I heard Dad cry and PaPa.  But I heard MeMe say, ‘I love you.’  And . . . I danced for her.”

Which was true.  After two hours of greeting friends at the visitation, Sydney had kicked off her shoes and pirouetted across the room to “Wind Beneath my Wings,” closing her eyes and moving expressively to the music in front of the podium which held vases of overflowing yellow daisies, a framed picture of Mom and a small wooden box holding her ashes, beautifully hand-crafted with a ceramic angel atop it and a plaque that read:

“Linda Kay Kent,

June 25, 1944  –  September 7, 2013”

Haley’s eyes squeeze shut against her now-copious tears as she says to her sister, “Don’t you know you’ll never see MeMe again?”

I sigh thinking, no, she doesn’t know.  Sydney doesn’t understand and might not ever.

But then Sydney says this: “Mom, every morning I wait for the bus. I feel her.  MeMe’s in the wind.”

Elusive as it seems, she’s onto something.  Maybe Syd is keeping her MeMe close in subtle ways that we can’t quite grasp, sensing her presence with a calm knowing; sensing her everywhere.  Maybe she doesn’t feel the same sense of loss because for her, MeMe isn’t completely gone.

Wrapping my arms around both my daughters, I reach for the same reassurance; for myself and for them.  Although I miss her, I take comfort in the thought that if I look, I can yet find her; in the wind through the trees, in the birds as they soar, and in the sun’s glorious rays that break through the clouds.  If I listen I can hear her voice and her laugh and feel her live on in my heart.

Our tear soup will be brewing for a long time.  The loss is painful, the memories are sharp and bittersweet, but the love shared is bigger than all of it.  We’re going to be alright.

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Filed under Down syndrome, Family, Grandparents, Grief, Letting Go, Loss, Memories, Motherhood, Special Needs

The Only Way Out is Through

After

Grief lives in our house. Among the furniture, between the windows and the walls, it sits, thick and unmoving. Grief rides heavy on my chest. I can’t get a good, deep breath these days. It weighs down my husband’s shoulders and molds his features. Grief seeps into our nights of restless sleep and dreams of forgetting, of waking, and then remembering.

Image by FelixMittermeier from Pixabay

We lie on our bed listening to the falling rain. Wet, fat drops pelt the windowpane and punctuate the silence. He curls up behind me, concave where I am round; our bodies fit together, pieces of a puzzle. In the stillness, the edges between us dissolve. I fade into him, absorbing his substance. A crack of thunder sounds. I inhale sharply to pull the air into my lungs. He draws a deep breath in through an open mouth, his chest heaving. With a sigh, it rushes out. Together we breathe our mourning. There is comfort in our solidarity and we close our eyes to accept the brief respite.

It occurs to me that my father-in-law will never hold his wife this way again.

Before

If anyone could cure cancer with sheer will and devotion, it would be him. He will not leave her side. He sits, he stands, he paces. He drinks coffee and more coffee. He questions the doctors and the nurses and the therapists. He hopes against all odds. He isn’t ready.

He sleeps in a recliner pulled up next to the hospital bed. He covers her hand with his and they talk in the dead of night, recounting their fifty years of shared memories. He helps her try to hang on and when it becomes clear she cannot, she helps him try to let go.

Until a year ago, the only loved ones I’d lost were my grandparents who had lived full lives into their 80’s. I still miss them dearly and lament their passing, but tragic death, to those young and taken too soon, by illness or accident had not yet entered my experience. Within a span of a few months, loss hit hard, lodging painfully in my sternum. Three deaths. My friend from childhood, my brother’s son, my sister’s husband. And now, my husband’s mother.

I can’t bear it, but somehow I must stay present to witness. This is the gift I can give my family by marriage. I am wife, I am daughter-in-law, I am sister-in-law. But my own crisis is significant. I am losing a mother, too.

I was twenty-eight when I met her. Newly divorced and unable to travel to my own family far away, I faced my first Christmas without my young children. My closest girlfriend insisted on taking me home to the bosom of her Midwestern family. Depression had me in its clutches. Morose and self-absorbed, I tried to decline. I wanted to retreat from the world at large and immerse myself in desolation, but she wouldn’t have it and dragged me across the country to Missouri.

I had never been anywhere east of Colorado, and all I knew were the clichés I’d heard. Friendly, kind and generous, the stereotypes of folks from the heartland held true, but more than that, these people radiated joy that spread to all within reach. Misery didn’t stand a chance when infected with their sunny optimism. In a noisy house full of activity, my senses were barraged: the smell of delicious food, the comfort of homey Christmas decor and quaint antiques, the resonance of children’s voices playing and adults laughing and talking all at the same time. My future mother-in-law welcomed me to her home, without conditions, without judgment. She simply loved me for being myself, a self she barely knew, but loved because her daughter loved me. I’d landed in a Norman Rockwell painting and it felt like being wrapped in a warm blanket after coming in from the cold.

I was teased for my wild hair and tie-dyed shirt and Arizona ‘accent.’ I gave as good as I got, though, imitating my future father-in-law’s Missouri dialect. “Well, now, you gotta take and go on past the ray-road tracks, that-a-way you’ll run right into that rest-runt. I tell you what, have they got great Eye-talian food. Jim-in-ey!”

We gathered around the large table as plates of turkey and ham and stuffing and potatoes were passed. I listened to stories from the past, each memory more outrageous, each teller louder than the last, boistesrous laughter erupting between the words that flew back and forth. We played board games until midnight and imbibed in PaPa’s famous punch, a delicious concoction of fruit juice, soda and what I’m fairly certain was an entire bottle of Southern Comfort. And on Christmas morning, when presents were doled out, I was handed more than one with my name on the tag. Gifts bought for me. And not just any gifts. How this woman knew exactly what I would love I will never know. The startling gesture touched me deeply. Can you fall in love with someone instantly? How about a whole family? They had me at “Welcome to Missouruh.”

My connection to her continued through the darkest time of my life. I felt doubly blessed to have my own mother to soothe my heartache and another mother figure who healed me unknowingly, simply by being herself. More visits and conversations allowed me to observe her ways, her smiling consistency and unflinching positive outlook, her effervescent energy. I came to know her well, and as they say, to know her, is to love her.

Three years later, as much a surprise to me as to everyone else, I discovered the love of my life right there in this family. Her only son, the brother of my best friend, proposed to me and I became a legal in-law, but I was already hers. I grew in devotion to her like Ruth to Naomi. “Whither thou goest, I will go.” She loved my children, and not just the Kent babies that came later, but those she inherited, my big kids, scooping them up and adding them to her brood like they’d been there all along, too. We were family.

Over more than twenty years and across hundreds of miles, we shared happy, contented times, and the inevitable tough times brought us closer still. But, this? This is beyond tough. The worst has happened: Mom is the heart of this family and losing her is unthinkable.

When the call comes it is unexpected and triggers a panic we try, and fail, to suppress.

Steven’s sister, my best friend, Traci says, “You need to come.  Now.”

With palpable urgency we throw things in suitcases, cancel appointments, and take the girls out of school, making the interminable drive to St. Louis at 80 mph. Reeling from shock, we don’t speak, but in our racing thoughts, we reach for anything to steady the lurching shift that’s thrown the world out of sync. Mom was okay just last week when they sent her home to recover from an arduous stem cell transplant. Even if she had a ways to go, she was definitely on the mend. But, now we know. The transplant didn’t work. Her body did not respond the way we’d hoped. For fourteen months the cancer attacked her viciously, resisting treatment after treatment, sometimes with near-fatal reactions. How unfair, how goddamned cruel, that now, after all she’s endured—transfusions, surgeries, hospitalizations, procedures that should have granted, if not a cure, at least more time, how devastating that she is left with this abrupt, horrifying end. She is only 69. As she said, “I was supposed to have more time.”

The reality hits when we reach the hospital. She is going where none of us can follow. Nearly everyone has come and Mom is surrounded by the ones who love her most, all three of her kids, middle-aged now with kids and grandkids of their own, her brother and sister, six of her eight grandchildren, and friends who have traversed the decades. Disbelief rocks us as we grope for meaning in this brutal certainty.

Compelled by prescience, though exhausted, she will not rest until everyone has been seen, the wrenching goodbyes a sacred ritual.

Special permission is granted to our young daughters to visit and when they enter shyly, she touches and kisses them. With heroic effort, between wheezing breaths, she helps them understand what’s happening.

“Remember when MeMe said everyone has a time?  It wasn’t time before but, well, it looks like it’s MeMe’s time now.” Her frail voice breaks and she pauses. “But it will be okay. Somehow it will be okay.”

They bend over her, careful to avoid the central line and oxygen cannula, for the last hug they will have. And after they’ve left, she weeps for the first and only time, utterly bereft, inconsolable.

Later, her girlfriend of more than forty years braces for their final farewell, putting a smile on her face before walking through the door.

“Hey, gal.  Whatcha doin’?” she says in a casual tone.

“Well,” Mom says, weakly, barely audible.  “Looks like I’m kicking it over.”

Bantering constantly, regardless of the situation, that is what they do. It’s how they say, “I don’t know what I would have done without you this year,” and “I don’t know what I’m going to do without you for the rest of my life.” They part not with ‘goodbye,’ but ‘see ya later.’ It’s not until Mom’s beloved friend is down the hall and around the corner that she finally lets go, collapsing into her husband’s waiting arms.

I’ve waited my turn, respectful of the pecking order. But I need to see her. I need her to know how I feel, but there are no words to convey everything she means to me.  For Good from Wicked plays in my mind along with the memory of sitting next to her at a live production of the Broadway musical—my birthday present to her—as lyrical voices resonated in the acoustical glory of the Fox Theatre. If I dared, I would sing to her,

I’ve heard it said
That people come into our lives for a reason
Bringing something we must learn, and we are led
To those who help us most to grow
If we let them
And we help them in return
It well may be, that we will never meet again
In this lifetime
So let me say before we part, so much of me is made from what
I learned from you
You’ll be with me like a handprint on my heart
Because I knew you . . .  I’ve been changed for good

Instead, I sit quietly by her bed, willing my love into her awareness as she lies sleeping. Suddenly, she opens her eyes and sees me. All that’s between us shimmers in the air. “I love you, Lisa Kent,” she says intensely. The blessing washes over me. “I love you, Linda Kent.” Tears are in my voice.  She knows. She ​knows.

Her goodbyes complete, the dying process begins in earnest. As pneumonia rages, her heart races and her breathing becomes torturous as her body fights for each inhalation. A sip of water to a parched mouth, soothing balm to cracked lips, a cloth to a fevered head, these only ease her suffering briefly.

“Rest now, Mom,” her oldest daughter, Lori says. “Just go to sleep.  We’ll be right here.”

But in between fretful sleeping and waking, she struggles to tell us one more thing. Barely able to form the words, she manages to utter, “I want us to stay a family.”

She’s worried that without her we will drift apart, let conflict come between us. She is adamant, and rightly so that we respect her wishes.

“I want you to love each other and be happy.”

“We will, Mom,” we say in unison. 

“Promise?” she pleads. She must know we will take care of each other before she can let go.

“Promise.”

The nurses move around us now as we keep vigil. Confined to a hospital room, a waiting room and a hotel room, perspective shifts radically and the minutes and hours lose meaning. Has it been three days or a week? A surreal bending of space and time becomes our existence; there is no longer a world outside this place.

My husband won’t leave. By her bedside, he quietly holds her hand as she sleeps fitfully, though it’s excruciating for him to watch his mother suffer. She stirs and asks in a panic. “Where is Steven?” though her hand is still encircled in his, their long fingers cut from the same pattern.

“I’m right here, Mom.” He strokes her cheek with the back of his hand. Reassured, she relaxes back into the pillows.

As the hours drag on, each time she wakes, finding herself trapped in a body wrecked by disease, her anxiety mounts. “Unplug me,” she says, though she is not on life support. With courageous acceptance, Mom is ready to go, leaps and bounds ahead of us.

Soon, the sedatives and pain meds help calm her as the separation begins. She drifts somewhere between here and . . .  not here. She’s stopped talking, retreating. ​

Dad sits on the edge of the bed and leans in close. “You are the love of my life,” he whispers. “You’ve fought so hard.” He brings her hand to his lips, bowing his head.  Sobs wrack his body. “Wait for me, I’ll be there soon.”

I cannot bear it and turn away from the intensely private moment. My hand covers my mouth and my eyes search for my husband’s. We look to his two sisters and an unspoken message travels between; we surrender to the swelling tide of anguish.

The next morning, Traci pushes the bulky hospital bed and the attached monitors and machines away from the wall and angles it toward the window. The rising sun streams in. Peaceful music plays quietly. Tranquility eases the tension for a blessed moment.

With her last bit of strength, she lifts her heavy eyelids a fraction. With incredible will, she lifts a shaky hand off the bed a mere few inches before dropping it. Through the small slits, her eyes are cloudy and seem unfocused. Yet as we watch, we swear her gaze moves slowly from face to face, tracking, lingering on each one of us. An electrical connection pings back and forth. She is here. But she is going. Soon.

It happens in a whisper. Dad and Lori have left, telling her they’re just going to grab some lunch. Kissing her forehead, he says, “I’ll be right back. See you in a minute.”

Steven, Traci and I, continue our watch in silence, together, but apart. Sitting in a chair, I rest my head in my hand and start to sleep, to dream.  For days now, her fight to breathe has become increasingly urgent.  The loud, rhythmic sound churns, a biological instinct for self-preservation. It’s become the background noise, a soundtrack to dying. As I drift further, something pulls my awareness back, as if I’ve been tapped on the shoulder. The lack of the repetitive churning sound slowly enters my consciousness. Then, abruptly, I wake up. Watching, I see her take a quieter breath. Then nothing. Awareness descends synchronously on us all and we spring to the bedside.

We wait and there’s another breath, easier this time.  A pause.  A softer breath, almost a sigh. A longer pause. Then another breath .  .  .  that becomes  .  .  .   her last.

Traci sobs and cradles her mother in her arms. Steven lays his cheek next to hers. I run for the nurse and hear my husband cry, “You were the best mother I could ever ask for.  I love you so much.” Down the hall I hear Traci wail like a child.“You held me when I came into the world and I will hold you as you leave.”

The nurse confirms it is happening and removes the oxygen mask. His hand on her chest, my husband feels her heart stop. We all feel it when she lightly, elegantly lifts from her body and glides away.

 After

An ephemeral gap in the storm appears suddenly, allowing brilliant light to bleed through the wooden blinds and warm my face for a moment before dark clouds converge, a pall returning. I roll over to face my husband.  Eyes closed, he is motionless, yet within, I can feel his disquiet. I sense the vibrations of pain coursing through his body. His mother has died. And where did she go? I can’t find her and it frightens me. She is gone, slipping the surly bonds of earth despite our desperate longing for her to stay. I know she no longer suffers. I believe she’s with the angels now, yet the cavernous void in her absence can’t be quantified.

I cup his cheek and smooth his brow. He opens his eyes to look at me and I see . . .  her eyes. He has his mother’s eyes. I see her in his cheekbones. And in his smile. He has her generous nature and tender heart, too. And brilliant mind. And love of cooking. I’m acutely aware how he came from her.

My spirit soars with this epiphany.  My babies, they came from their father, who came from her. Like Russian stacking dolls, they too, are part of her, shaped by her influence, molded in her image. She lives on within them; everything she was and everywhere she was from.

From small towns and familiar neighbors and grandma next door. From gas at 21 cents a gallon and no indoor bathroom and a washing machine hooked up on the back porch. She was from the chill on a fall morning in Kansas as leaves blew along cracked sidewalks, and from laundry hung on the line to dry in the spring sunshine. From playing board games inside on snowy days and riding bikes outside until dark.

She was from an absent father and an unstable mother. From a younger brother and sister to look after and from growing up too quickly. From babysitting at ten and working at Tasty Freeze at thirteen for $.75 an hour.  From a dance club out of town in an old warehouse and cherry vodka and Jan and Dean and Ricky Nelson.

From an office job at Pittsburg State and a handsome fraternity boy from the university. From young love they said would never last. From a little white house and domesticated bliss and round babies that bounced on her knee. She was from washing dishes and washing out diapers. From friends who became family and raised each other’s kids, who made their own fun on a Saturday night when money was tight.

From the Kool-aid house where everyone wanted to hang out with the mom they wished was theirs. She was from “I’m gonna come down there and spank some butts!” and “Get outta that, dinner’s almost ready,” and “Be home by midnight and don’t drink and drive.” She was from “You can be whatever you want to be,” and “I’m so proud of you.” She was from motherhood first and everything else second.

She was from crockpots and homemade macaroni and cheese and chocolate cake and Christmas braid. From birthdays and Easters and Valentine’s Days cards with cash inside. From shopping year-round and finding the perfect gift for the perfect person. She was from boundless generosity.

She was from cross-stitched samplers and Precious Moments figurines and Longaberger baskets. From Christmas trees in the living room and in the family room and in the kitchen and in the bedroom, decorated with ornaments that aged with her children, each marked with the date and holding the memory of that time. She was from Santas: on the hutch, the shelf, the table and the stairs. Old World Santas, Black Santas, country Santas and ceramic Santas. She was from Santa himself (played by PaPa) coming in through the back door on Christmas Eve with presents for the little ones. She was from trash bags of torn and crumpled wrapping paper and delicious aromas and bellies too stuffed to move.

She was from a house bursting with laughter and life and noise, from her dream of a large family come true. From shouts of “MeMe!” followed by torpedo hugs around the waist. From special weekends and movies in the living room and Barbies and arts and crafts and baking cookies. She was from beautiful hands and gentle touches and soft hugs. From open arms for everyone who crossed her threshold. She was from acceptance and judging no one.

She was from hard work and dedication. From eye-glasses and fittings and appointments and patients and co-workers who loved her, from knowing everyone in town. She was from rising before the sun and falling asleep in front of the TV.

She was from retirement and Grandparent’s Day at elementary school and dance recitals and choir concerts and softball games. She was from best friends and vacations in the Smoky Mountains and Tybee Island and Santa Fe. From two couples, best friends, traveling the country and shopping at the Lake. From coffee on Saturday mornings and growing old together.

She was from signature perfume and Pandora charms and Land’s End sweaters and scarves from L.L. Bean. From new recipes and new bedspreads and new rugs. From gardens and bird-feeders. She was from Mid-West Living and O Magazine. From bookshelves and bookshelves of books. From Kindles and laptops. She was from photos on Facebook and photos hung on every wall.

She was from spending her entire adult life as wife to her husband, for better or for worse, in sickness and in health. From forgiveness and steady calm in stormy seas. She was from dignity and grace and long-suffering.

She was from pink ball caps skewed to the side to cover her balding head and Relay for Life and incredible courage in the fight for her life. From comforting others even at the end of her own journey.  She was from “Everything’s going to be all right,” and “I love you so much,” and “I’m ready to go.”  She was from pure love.*

Memories and impressions of my mother-in-law flood my senses. The sting of death remains, but losing her is impossible: she’s here. My breath rushes in and I’m filled with the Essence of Her Presence. I exhale  . . . then begin to weep. My husband’s arms lock around me quick and tight. Even in his own grief, he understands the depth of mine. He will hold me as long as it takes.

Grief lives in our house, but so does joy. The world without her will never be the same, but the sun will come up and the days will go by. The children will keep growing and a new life will join the family when our grandson is born in a few months as we more to come as we remain a family. We will laugh and celebrate and dream. And when remembrance overwhelms us, we will cry and rail and grieve again. There is no escape. We are powerless to circumvent mourning. I can’t bear it, but somehow I will, by leaning into the grief and feeling it in my bones, by going about living our robust lives and by knowing that the two are not mutually exclusive.

Mom wants us to be happy. She told us that in her dying wishes. She loved the song, You’ll Be in My Heart, by Phil Collins from the movie, Tarzan, which serendipitously came out the year our daughter, Sydney, was born with Down syndrome. The lyrics speak of the protective and nurturing nature of a maternal figure. I think she wants us to know she’s still here, loving us, mothering us. And I believe if we listen, if we just look over our shoulders, we will always find her.

You’ll be in my heart
Always, I’ll be with you
Just look over your shoulder
Just look over your shoulder
Just look over your shoulder
I’ll be there always”

I love you, Mom.

*Format taken from the poem Where I’m From by George Ella Lyons.

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Filed under Aging, Enlightenment, Family, Grandparents, Grief, Letting Go, Loss, Motherhood, Siblings

Give and Take

 

handssoft

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

Elastigirl

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 17th?”

“Yes,” I answer for the 700th 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

Accouchement

My husband aIMG_1573nd I had dinner last week with another couple, friends of ours expecting their first child(ren), twins, and expecting them soon. As we joked about the wife’s swelling feet and widening girth, (and the good fortune that her husband is strong enough to hoist her off the couch), I notice beneath her overt anticipation of the blessed event(s), the covert exhaustion she was hiding. An unmasked expression crossed her pretty face, just for a moment. One that only a gestating woman in her last weeks would understand, one that said, “Please, God, let this be over. Right now.”

In sisterly solidarity I immediately flashed back to pregnancy, a state both magical and miserable, completely consuming; a transformative rite of passage. In the nanosecond it took to relive, the realization that I’d never actually be pregnant again descended on me with finality. I will never again grow a child inside my body and I’m not sure how I feel.

Coworkers, friends and family all seem to be doing it: multiplying and replenishing the earth. Pregnant women surround me, their ripening bodies nurturing the genesis of life where there was only potential. No matter that women have been giving birth since the dawn of time, each new miracle astounds me.

I won’t experience an unseen little stranger rolling underneath my rounded belly, pushing me from the inside (and in the case of my youngest, punching me), proclaiming their presence with every hiccup and jab to my ribs, staking claim to my heart long before their grand entrance. I won’t bring a brand new person into the world, someone who didn’t exist before, but without whom I’d be incomplete. That part of my life is over. Chapter closed.

It’s not about wanting another baby — twinges of longing for a tiny human, swaddled and sweet smelling have been replaced by relief over no more diapers or colic or projectile vomit. Plus, after a bit of waffling, the decision to be done was made after my third baby, though the fourth did not get the memo.

No, this is about discovering myself past childbearing age, about acknowledging my progression from maiden to mother to crone. What is this ambivalence, and why does it feel like loss? Possibly because fertility and youth are intertwined; I’m no longer fertile therefore no longer young? But perhaps it’s more about seeing the journey from birth to death as a one-way trip, and feeling time, like a strong gust of wind, pushing me forward.

The first time a child split me wide open, body and soul, I found purpose. Fragile, yet resilient, so new, yet so familiar, I held, in my arms, the answer to every question; the meaning of life itself. And each time I cupped a small rounded head and inhaled the intoxicating fragrance of newborn skin I was reborn. Changed. I simply do not know who I would have been had I not been a mother. The archetype has imprinted my identity so as to affect all other relationships; all paths taken and not taken.

Bearing evidence of birthing and breastfeeding four babies, my body has lost the elasticity to reshape itself. My psyche still grapples with maintaining a separate sense of self while giving my children my whole self, an inescapable urge. But, though I may disparage my life or wish briefly for something different, I know I wouldn’t trade the sacrifices made for the indulgences gained.

At 31, a divorced mom of two school-aged children, I remarried with hopes of a second chance at the happy family I’d always wanted. I dreamt of more babies to cradle. After a miscarriage, at 36, I gave birth to a beautiful baby girl with thick red hair, milky white skin, and Trisomy 21, Down syndrome. The initial shock of her diagnosis was surprisingly short-lived. Bringing gifts, her presence was cause for celebration. She taught me to slow down, breathe, and stop long enough to find stillness. She taught me the richness of a simple life. She taught me contentment. And her younger sister, despite the 99.9 percent effectiveness of birth control, was born when I turned 40. She teaches me… patience.

Mothering is nothing if not an exploit of extremes, and for every Hallmark moment there are 200 ‘Suck it up, you’re the Mom!’ moments. Like being eight months pregnant and worried sick over an absent teenager, hours past curfew, before cell phones. Like weeks of hospitalization with a two-year-old in critical condition. Like night terrors at 3 am with a delirious 7-year-old. Or apoplectic meltdowns in the supermarket and shoes thrown from the back of a minivan. Or Sesame Street and Teletubbies on video loop. Or pet salamanders and pet mice and pet birds, who still poop, even though they’re small. Like all things educational; relentless forms and meetings and bureaucracy, from kinder to college. Like sleep deprivation that lasts for years, and new appliances that last five minutes, and endless sticky messes.

Babies are akin to kittens; adorable at first, but quickly turning into cats. Adoration got me through midnight feedings, hysterical crying, and explosions out both ends. Devotion gets me through the rest: dirty dishes, dirty faces, dirty clothes and dirty rooms. Through broken bones and bruised hearts. Through whatever it takes to get my chicks from here to there, to their moment in the sun, when I, their biggest fan, cheer loudly, “You did it! I knew you could. I knew you would!”

I’m not a perfect mom. Far from it. I lose it on a regular basis (my sanity, my temper, my grip). My kids drive me right over the edge, but I love them with a ferocity bordering on psychotic. I don’t think I’m unique. Mother-love, the most powerful force in the universe, can save the world and I wouldn’t swap it for a stunning body or a hundred trips to Europe or a life of leisure, even on the days I swear I’m this close to selling my offspring to the highest bidder. On the days I need a reminder, I replay in my mind a particular night I put my youngest, the one who defied the odds, to bed. Not yet 2, she’d overheard me referring to her unexpected arrival on the planet as I often did by way of an affectionate nickname. Most likely, I’d had a rough day, since every day’s a challenge when you have toddlers. Presumably I wanted to get her down and escape to a glass of wine. As she nestled close for a kiss she said, “Mama? I you bonus baby, wight?”

Oh, yes. A bonus. Something extra. Much more than I bargained for, the challenges of motherhood were impossible to foresee, but equally unknowable were the profound rewards. And its infinite nature; a mother doesn’t stop mothering when her children are grown. In my mother-in-law’s soothing voice over the phone as she reassures her son, a middle-aged man, is the love of a mom for her little boy. Across the miles, in an email, my mother’s words carry a tender caress to me, her daughter, the mother of grown children herself.

There will be no more babies, at least not from my womb. Someday in the not-too-distant future, the babies of my babies will christen me Grammy or Nana or Gran. The thought is surreal, yet, enchanting. When the child of my child is placed in my arms, I will lean in close and press my cheek to that precious face, so new, yet so familiar. I will inhale the intoxicating fragrance of newborn skin and look into soulful eyes seeing generations past and future. And in the sacred hush I might hear heaven whisper, “This is the meaning of life.”

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Filed under Aging, Babies, Childbirth, Family, Letting Go, Marriage, Motherhood, Parenting, Self-Care

Leap From the Nest

mama swan

Where are you going, my little one, little one,

Where are you going, my baby, my own?

Turn around and you’re two, turn around and you’re four,

Turn around and you’re a young girl going out of my door.

Turn Around by Malvina Reynolds and Alan Greene

Autumn is my favorite time of year and there’s nowhere the season is more provincial than in the Midwest.  A tangible chill in the morning air softens the heat of summer and signals a coming change.  Seemingly overnight, leaves begin to turn.  Variegated branches hint of color that will soon become rich orange, yellow and red, flaming briefly before falling to the ground and creating nature’s perfect playground for jumping children.  The farmer’s market yields a spread of eggplant, pumpkin, corn, squash and apples; not only a visual feast, but a culinary mother lode for comfort foods that fill the house with the tantalizing aromas of savory soups, roasted vegetables, freshly baked bread, and apple pie. Thrushes, sparrows and other song birds nest mid-migration, on their way to warmer climates. The days shorten and the pull of the Earth’s orbit around the sun is felt.  My own focus gravitates homeward; summer is over.  It’s time to go back to school.

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

Oh, the Places She’ll Go

 Congratulations!

Today is your day.

You’re off to Great Places!

You’re off and away!

Dr. Seuss

By the time Sydney was born I knew firsthand how quickly babies grow up. The journey away from their mothers and towards their own becoming begins with the first breath. I knew that my job as a mother was to guard my children’s safety while guiding them to autonomy; to teach them self-reliance and then . . .  let them go. Never again could I protect her as much as when I carried her within my body, umbilical cord intact. I knew my little one with Down syndrome would need extra protection; what I did not know was that she would need independence and self-assurance just as much. And she’d need me to teach her, then stand back and let her thrive.

I’ll never forget the first time I lost Sydney. One moment she was standing by my side, the next she was gone. Vanished. Panic doesn’t begin to describe the altered-state of vertigo a mother feels on losing sight of her toddler. I felt I wouldn’t breathe again until I found her.

Wandering is a common behavior for children with Down syndrome — I read that early on somewhere in the considerable pile of literature we’d amassed. But, I didn’t get it until it started happening though I definitely wouldn’t call what Sydney did wandering.  wan-der v. to go aimlessly, indirectly, or casually; meander. There was nothing aimless or casual about her meanderings; they were purposeful and confident.  e-lope v. to leave without permission or notification.  run away v. to depart quickly; take to flight; flee or escape. These are more accurate words to describe my daughter’s exploits, occurring with what came to be exasperating frequency.

She’s an escape artist

She was about 2 ½ when she mastered the art of a stealthy escape. Watching for an opening when my attention was diverted, she’d make her getaway, leaving me turning in circles, frantically, uttering “Where’s Sydney?” repeatedly. I lost her in the grocery store, in the mall among the clothes racks, in Walmart with its endless aisles. I lost her outdoors in crowds, at schools, at parks, at festivals and events. I lost her at parties. I’d find her off in someone’s master bedroom digging through their drawers (she even climbed in someone’s bed once), or getting into a cupboard in their laundry room.  Upon entering a new environment, my first priority was to secure the perimeter.

I even lost her at home. One spring Saturday when Sydney was nearly 4 and I was pregnant with her sister, Haley, the whole family busied themselves with preparations to sell our house and move. My husband, Steven was in our vast backyard, tending to an acre of walnut trees and gardens. Inside, boxes in various stages of packing lined the walls.The open doors let the cool air circulate; our high-schoolers, Melissa and Jeremy ran in and out.

I thought Steven had Sydney with him as he worked in the backyard, so when he came in the house alone, I said, “Where’s Sydney?”

“I don’t know,” he shrugged. “I thought you had her.”

I couldn’t breathe until I found her

My stomach dropped. “I don’t have her. I thought YOU had her!” I shot back at him.

A cursory search of the yard yielded no trace of her and with increasing urgency we spread the search in an ever-widening circle. I turned back to the house thinking maybe she’d snuck inside. I combed every room, closet, nook, under beds, calling her name.

Twenty minutes went by, a veritable lifetime. We called the local police and sent the kids and their friends in all directions to look. My perception of time warped and stalled out. It seemed interminable, yet I willed it to stop.  “Just WAIT!” I though, “until I find my child, safe and sound. Then the world can resume.”

I tried to shake the images that flooded my mind, but my gut churned, my heart raced and my throat locked down. I started hyperventilating as my fear overwhelmed reason.  Steven tried to calm me down; the likelihood of kidnapping was low in our small town, traffic was light — and slow ,and she couldn’t have gotten as far as the railroad tracks yet.  But anxiety crowded the edges of his composure, too.

After thirty minutes, I heard Melissa yell from the next-door neighbor’s house just 20 yards away the words I’d been desperate to hear for a half hour.

“I found her!”

Though relief flooded my system, the chemicals in my bloodstream shifted and nausea threatened. I quickly recovered and ran towards Melissa, calling as I went, “Where was she?”

“She was in the neighbor’s house.”

In small towns, people don’t always lock their doors and Sydney had headed across the road, up the back stairs and let herself in. While everyone was out looking, including the police chief, she was at our friends’ house, having a fine time by herself.

Her disappearing act continued, but once she discovered the enormous amount of attention her antics garnered, the ante was upped and she started bolting. Instead of surreptitiously gliding away, she’d make a quick break for it. She was smart and fast! For a child who’s cognitively impaired, she was nothing short of cunning. Despite having hypotonia (low muscle tone), she ran far enough and fast enough to evade capture unless a significant chase ensued. And so the game was on.

Laughing hysterically, hair flying in the wind, little legs pumping like pistons, and completely oblivious to danger, she looked over her shoulder to be sure we were pursuing. The more we followed, the faster she ran. The more she ran and we followed, the more the behavior was reinforced. And we didn’t have a choice; we couldn’t not run after her.

If I, her mother, couldn’t keep tabs on run-away bunny, how was I to send her out in the world and trust anyone else? She started school at only 3. The early childhood special education program, held in a local church, featured a playground in the back parking lot—with no fence. We warned, “She’s a flight risk. You’ve got to watch her constantly.” Within the first week, I got a phone call from a neighbor telling me Sydney had been found walking along the highway. The school didn’t even know she was missing. She has eluded watchful eyes at every school since, taking side trips down hallways, foraying into other classrooms and even out into the woods once during recess.

She managed to get away from babysitters during the rehearsal dinner for my sister’s wedding. Already uneasy to leave her, we cautioned the couple in charge–adults, a mom and dad themselves: “You have to watch her really closely.  She’s is an escape artist.” Sure enough, Sydney slipped out the side door of the guest house where we were staying, crossed the street, and through the grand entry into the hotel. No one saw her go and she wasn’t missed until one of the kids pointed out that she was gone.

We installed locks, gates and alarms but she continued to foil her captors. We ultimately used a harness and a leash in exceptionally risky situations. It was the only way I knew she was safe—if she was physically tied to me.

She needed me to let her thrive

The umbilical cord re-instated, my protective instincts were finally satisfied. As the terrifying challenge of holding onto her became our way of life, a pattern was formed: a habitual and unconscious sense of control I attempted to exert over the environment and my child’s relationship to it. I became so accustomed to reining her in and holding her close because of my own fear that I forgot to notice when she no longer needed it.

I never want my children to suffer and the desire to shield them from pain is as strong as my love for them is deep. But, I’ve had to ask myself when does sheltering my growing babies from life experiences no longer serve them in the journey they’ve undertaken? When does buffering the natural consequences of their own choices become detrimental to the instinctive objective they were born to; that of growing away from me? Wasn’t that the whole idea of having them in the first place?

Raising children means making the beautiful progression from the umbilical cord that sustains, to the leash that restrains, to the invisible tether that remains, connecting child to mother wherever they go in the world. Every day I take a deep breath and let go. Again. Then I  send them out into the world, into their world. They go because they feel the safety—it’s in the tether—and it can stretch as far as it needs to without breaking.

“Are you watching me, Mom?”

When Haley gets on the bus heading a mile away to elementary school—she presses her face to the window and blows me kisses. When Melissa gets in her car and drives hundreds of miles to her summer job in Colorado—she looks back in her rear-view mirror and waves. And when Jeremy walks down the jetway and boards a plane to Chile—he turns back to see if I’m still there.

“Are you watching me, Mom?” each one asks.

You bet I’m watching.

Sydney’s almost a teenager and has pretty much outgrown this phase of running off.  She frequently declines to even hold my hand as we’re walking through a parking lot.  The other day I went to pick her up early from middle school and as I waited I noticed a kid, alone, at the end of the long hallway. As this lone figure advanced and came into focus, I saw it was my daughter, walking down the hall, unaccompanied, with confidence in her stride, toting a backpack as big as herself and wearing a smile that said, “I’m ready.  Let’s go!”

You have brains in your head.

You have feet in your shoes.

You can steer yourself

Any direction you choose.

You’re on your own.

And you know what you know.

And YOU are the guy who’ll decide where to go.

Dr. Suess

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Filed under Down syndrome, Growing Up, Letting Go, Motherhood, Parenting, Special Needs