Tag Archives: Family

Name Them One By One

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 overwhelmed 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), transformative 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 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.

Thankful for one more day

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 destroyed. 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 circumstance.

Hope is possible through gratitude

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 that this Thanksgiving might 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, 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.

To be human is to feel all of it

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. I hold hands with all the world and 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 count my blessings out loud

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 my 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.

The meaning of life: to give life meaning

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 children’s 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 needs met and nourished. For a meal waiting at the end of a long day, for the contentment of belonging to each other.

Love will prevail over conflict

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 heat-seeking 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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Filed under Enlightenment, Family, Gratitude, Growing Up, Marriage, Motherhood, Thanksgiving

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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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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Extinguish and Evolve

“Mom, do you have a pencil and paper I can have?” my daughter, Haley asked as we watched the ring-tailed lemurs leap from tree to tree at the San Francisco Zoo. “I need to write something down.”

Our vacation this year — part sightseeing, part family reunion — took us on a 5,000-mile adventure that included 4 flights, 3 hotels, 2 rental cars and 1 beach house. My husband, Steven and I took our two youngest, Sydney, 14, and Haley, 10, braving airport security and mass transit to do something we love: travel.

I scrounged in my purse, finding a pen and a grocery receipt, and handed them to Haley then watched as she walked over to a placard and started writing. Peering over her shoulder I read:

We are burnt by the fire we have started

Proverb from Madagascar

Madagascar’s deforestation, largely the result of slash and burn agriculture, is resulting in the rapid destruction of the lemurs’ habitat and has rendered the primates endangered.

Intrigued, I asked, “Why do you want to write this down, sweetie?”

She didn’t hesitate, “This is a good thing to remember because when you make bad choices you’ll always be affected by it. You’ll always get consequences.”

What goes around comes around

When I was growing up, my mother was fond of saying, “What goes around comes around,” something I didn’t quite understand then. Looks like my daughter gets it already. Smart girl.

We drove up the California/Oregon coast to join my mom’s side of the family for a rare reunion. There are three sisters in her generation; all single and living alone. In preparation for this momentous occasion, they went through albums and storage boxes of old photographs and sent me scads of them, some faded and torn, dating back more than a hundred years. I sifted through them, selecting the best ones to create a slideshow.

William Earnest

For hours I worked, mesmerized by the sepia tones and black and white images of decades past and awed by uncanny family resemblances. My great-grandfather in his 20s looked shockingly like my brother at the same age; a genetic blueprint stamped across time. The photos held the energetic charge of ancestry brought to life in cryptic storytelling. At 50, for the first time I felt deep stirrings, sensing my lineage as a gossamer web linking me to strangers. As though the double helices in my DNA vibrated in recognition of my people.

The similarities are not only physical, but in what we’ve chosen to do. I come from a long line of artists, musicians, writers and teachers, from brilliant minds. We are creative souls and passionate innovators. Yet the pedigree is rife, too, with mental illness, addiction and abuse. While the photos tell tales of triumph over loss, inspiring hope, behind the camera lie stories of pain and suffering, often at the hands of loved ones. I cannot deny the dark reality of my origins, but bringing the past into the light to examine allows me to see where I come from. And moreover, who I’ve become in spite of it. Or perhaps because of it.

The double helices in my DNA vibrated

Claude and Loretta

Our family reunion provided the perfect opportunity to take a closer look. A kaleidoscope of personalities and interactions, the few days spent with some of the people I love most on this planet can best be described as . . . intense. Being together after many years apart was indescribably sweet and heartwarming. The conversations and tender reflections, just as I’d envisioned, elevated and strengthened our bonds. But patterns springing from old injuries triggered strident reactions. The tension born of control issues and power struggles — dynamics all too familiar — began to threaten the happy tone of our gathering.

At one point, I ran away. To the beach. I found a trail and followed it up a mountain, working out my thoughts to the pounding of my heart. Pumping my legs and lungs, I breathed in the cool air. By the time I emerged on a steep cliff overlooking the vastness of the ocean I’d gained perspective. In front of me was the big picture. Gorgeous waves sprayed white foam as they crashed against jagged rocks below, the sound, both powerful and calming at once. The lush pines growing along the sheered edge reminded me of the place Mom and I scattered my Grammy’s ashes.

Freedom in compassion

In solitude I stood. The wind whipped at my hair. My apprehensions lifted, dissolving, blowing out to sea. I was left with a peaceful quietude and a clear mind so I could hear the voice that said, “Separate the worth of those you love from the way they behave.” Here was my salvation: In my compassion for my family I found freedom for myself.

Patsy, Katie, J.W., John, and Gwen

Terri Cole, licensed psychotherapist says, “When you analyze the family belief system, you can begin to see that much of what you experience as ‘the way it is’ is just the way it was in your family of origin and that you can choose a different way of seeing yourself and your potential. Once you understand how it was, you can decide how you want it to be.”

What goes around comes around, but does that mean history must repeat itself? I think not. “When you know better, you do better,” said Maya Angelou. Can I put the fire out and stop this generation from burning the next? The answer is a resounding yes.

Though conflict was inevitable, the visit was also interspersed with priceless moments to cherish: combing the tide pools and watching the kids play in the waves, making breakfast side by side, singing with a guitar around the campfire. And the highlight, dimming the lights to take in the slideshow. My intention was not to glorify the past and hide its shadowy secrets, but to illuminate that which holds us together amidst our brokenness. It was my gift, a love letter to my family.

A love letter to my family

Pat and Lisa

Years of memories passed across the screen; lifetimes told in pictures. In a cacophony of noise we watched. Shouts of recognition and celebration. Squeals of delight. And tears of mourning and regret. We reached out and held hands. We held each other. We forgave each other.

Like I said, intense. But, profound. And pivotal. Because the cycle is broken with my generation. We are no longer burned by the fire that was started ages ago and our children will never know the scars our parents bore.

Back in the Bay area, after our trip to the zoo, my little family enjoyed dinner at a local bar and grill, comfortably seated in a high-backed wooden booth. Haley finished first and got squirrely. She needed to use the restroom, but had kicked off her shoes. She dove down and her denim-clad bottom piked above the table. Her bare feet followed, their blackened soles flailing in my face. Before I could stop her crawling on the floor, she cracked Steven’s shin with her head.

Bad choices get consequences

“Ouch!” he startled, rubbing his leg.

“Haley, get up here, now!” I said peering under the tablecloth.

She popped up, breathless. “But I had to get my shoes!”

Steven lowered his chin to level his best “listen-to-me” look at her. “This behavior is not okay. Where are your manners? We take you out to a nice restaurant and this is how you act?”

She listened, taking her licks. At that point, living out of suitcases and eating in restaurants was taking a toll on us all.

“Tomorrow night, you’re having a burrito from the gas station!” he finished, exasperated.

Haley

I looked at her repentant little face, thinking he might actually be getting through to her.

“Come on, I’ll take you to the bathroom,” I said, sliding out of the booth.

As we walked down the hallway, hand in hand, I reminded her of the quote she’d copied earlier and her own interpretation, when you make bad choices, you’ll always get consequences.

She leaned in conspiratorially and with an expression that said “the joke is on Dad,” she whispered. “They don’t even have burritos at the gas station!”

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Holding Space

Brother and sister,

together as friends,

Ready to face

whatever life sends.

Joy and laughter

or tears and strife.

Holding hands tightly

as we dance through life.

Suzie Huitt

Flying over New Mexico on my way to Phoenix, I peer through the airplane’s small window, taking in the vastness of the red rocks below. I’m going home to the desert. To the funeral of my brother’s son.

People in my life keep leaving. They move away or they change. Sometimes they just stop answering my calls. Or they die. Abruptly, they’re gone from my life. I don’t know why this keeps taking me by surprise or why the blow to my heart doesn’t diminish with its recurrence. I’ve been collecting losses and abandonment along my path like souvenirs on a trip.  

I can’t seem to find my way through the loss. Pain, heavy and suffocating, has set up residence in my chest. Not long ago, one of my sisters lost her husband to cancer. Around the same time, a close friend died from suicide. My heart–the organ that pumps my blood and the seat of my emotions–hurts from so much grief. And now, my nephew, this precious boy, not yet 21, is gone. Nickolas was only eight years old the last time I saw him. Maybe it was I who abandoned him.

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In the Love Place

And so lying underneath those stormy skies
She’d say, oh, I know the sun must set to rise.

Paradise by Coldplay

~For Richard, Heidi and Gabriel~

It was Sunday afternoon. The weekend that seemed to stretch out enticingly before me on Friday was, for all intents and purposes, over. I sat on the couch, mindlessly surfing Facebook, playing Angry Birds. I had the ‘Sunday blues,’ that restless dissatisfaction that strikes around 5:00 p.m. when the realization that a weekend filled with relaxation and leisure is just not going to materialize. This happens frequently. My days get filled with grocery shopping, running kids to activities, projects at home, work issues, and other mundane tasks. My fun time gets relegated to Saturday night after the kids go to bed and I pass out halfway through a movie.

I felt a shift coming in the weather foretold by the pounding headache that stormed my skull. Sitting alone I looked out the window at the gathering clouds and malaise settled over me as I thought with a sigh how the girls would be home shortly. I’d have to get up from this couch to start the nighttime routine: wrangle up dinner, corral kids into the shower and herd them to bed. I’d go through Friday folders (Sunday night folders, let’s be real) and look ahead to everyone’s schedules, gearing up for another busy week.

But that was all before I got the news that my brother-in-law had died. Just 45 minutes earlier, while I was lamenting the end of the weekend, he’d taken his last breath and given up the battle he’d waged to the finish. Though he and my sister were separated, in the end, their differences didn’t matter. The strife and tension between them healed spontaneously on his journey from this plane to the next. When cancer took over his body, she took him into her home. She tended to his dying and in the process found forgiveness. Her focus was on creating lasting memories for her son, their son.  He is seven, my nephew, much too young to lose his father. And his father, much too young to lose his life.

Richard suffered in pain and struggled for every breath. He had not come peacefully to his death. The denial tortured both he and Heidi. When his agitation became too great, the meds gave relief and he drifted in a morphine-induced fog. My sister lay down with her husband, pressing her body to his, her mouth to his ear. 

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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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Symphony in the Silence

tree notes moon

Simple, profound truths come in quiet moments.  They descend gently in the warmth of a setting sun.  For me, it’s an altered perception, a shift; when time stretches and slows, and epiphanies unfold in brilliant clarity.   My daughter, Sydney lives in those moments.

Life moves fast and some say time itself is speeding up.  The efficiency of our amazing technological advances allows for rapid, immediate digital interactions but rather than creating more space in our lives, it generates a frenetic, frenzied pace as we move faster and faster, trying to do more and more.  As a mom I’ve certainly succumbed to the pressure of technostress.  The conveniences intended to make my life easier actually increase the expectations I place on myself until I am perpetually, chronically, frantically busy.  I’m weary of hearing my own response to the question “How are you?” “So busy. Crazy busy! But great!”   And I mean it; I love my life, but too much doing, not enough being resulted in everything going out and not much coming back in.  Before I knew what had happened the joy I felt in living was shrouded by the responsibilities that living demanded.

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Filed under Down syndrome, Family, Motherhood, Parenting, Siblings, Sisterhood, Special Needs