Monthly Archives: November 2013

Name Them One By One

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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