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What Do You See?

4/26/2016

29 Comments

 
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As a parent of a child with special needs, I sometimes wonder what my kid’s days are really like when she is away from me.  Not as recorded in an IEP or a 504 plan.  Not filtered through someone else’s report.  I want a chance to simply stand by and watch, undetected, as my child goes about her day.  


I want to see what my child with Down Syndrome sees.  


One day, I had that chance.  Her school scheduled a field trip, which included a bus ride to the city, tours of an art museum and outdoor sculpture garden.  I’m all for mainstreaming, but this was too big of a day to just let my daughter go and participate freely with the other kids.  There were too many variables.  So I signed up to be a chaperone.  “Not just a regular chaperone, though,” I said.  “I just want to be in the background to give Stella as much freedom as the other kids have.  I’ll stand back and just be there if she needs me.”  


Not a helicopter parent, just a safety net.  


The day started off beautifully.  The sun was shining, the sky was blue, and the crowd of eager 3rd graders lined up to be paired off for an art scavenger hunt in the sculpture garden.  


Do you remember what 3rd grade is like?  


Picture a pile of nine and ten year olds, waiting to be matched up in pairs.  Shrieks of joy ring out when a friend’s name is called, smiles all around.  I remember that.  I also remember that sinking, third-grade-girl feeling of gloom when my name was not matched up with a good friend.  This day, I stood on the edge of the crowd, watching the pony-tailed girls in the class skip off, smiling, hand in hand for the scavenger hunt.   I held my breath, wishing that for my daughter.  


But Stella was paired with a boy.  Let’s call him Mark.  I wondered how well Mark knew Stella, or if he was displeased.  Let’s face it;  above and beyond the whole boy/girl barrier, a scavenger hunt is a race, and Stella is prone to meander and mosey.  Whoever Mark was, he would definitely not be coming in first place.  What would his reaction be?   I have to be honest.  If I had been in his place, I know how I would have felt.  Anticipation, excitement.  My fingers would have been drumming and the butterflies racing.  ‘Grab the clipboard and run!  Others are ahead of you - work hard and win!’  would have been running through my mind.   Competing was more important than curiosity in third grade.


But I am a grown up now.  I am accustomed to slowing down and waiting.  It’s not so bad.  I watched, unnoticed in the background, as Mark organized a clipboard, a pen, and the worksheets for the scavenger hunt.    Here we go.  


Mark then turned to my quiet little girl with Down Syndrome and said, “Here, Stella.  You’re really good at writing, so you start out as the note taker.  We’ll take turns.”


“Okay,” she said, brightly smiling up at him.  


Off they went.  Other kids raced ahead, searching for sculptures.  Mark walked slowly with Stella.  


I followed them through the sculpture garden as they worked through the checklist, absolutely in awe of the way the two kids worked together.  Mark was kind.  He was happy.  He was accommodating without any hint of impatience.  He encouraged her to write what she was able, and didn’t erase or adjust any of the answers that she wrote down.  


He was amazing.


Stella, of course, was every bit as wonderful.  I might be a little bit biased.   She amazes me every day with her compassion and gentle disposition.


Together, these two calm and curious kids strolled through the sculpture garden, experiencing art, taking it all in.  At the end of an hour, they lingered at “Woodrow,” a great bronze horse sculpture that appears to be built from sticks and branches.  I had been staying a few steps behind them with my official chaperone badge, quietly watching over them.  But then Stella called to me.


“Mom!  Mom!  Come see!”


“It’s a beautiful horse, Dear,”  I replied, walking up close to the kids.  


“No. Not a horse.  It’s a nest.”  Stella said. 


“Yes, it is built like a wooden nest, Honey.  But it’s definitely a horse.  See?”  I showed her the nose, the eyes, the ears.  “It’s a horse.”


Stella took my hand and shook her head.  


“No.  Come closer.”  


Then she and Mark pointed out what they could see and I could not.


There really was a nest.  A small bird had built a nesty home, deep within the heart of the Woodrow sculpture.  Wisps of twine fluttered from between the great cold bronze sticks.  The bird nestled there, warming her eggs.  Two quick, shiny eyes stared back at me.  


How could I have missed that?  In keeping my distance, I thought I saw things for what they were.  Proper perspective, you know.  Powerful sculptures.  But I wasn’t really seeing anything from that far away.  My perspective was all wrong.  I got down on my knees, next to the kids, and watched the bird’s feathers fluff in the wind.  This bird within her nest was a perfect little miracle, hidden away in the thatch of tangled metal.  We watched and wondered together, feeling the art come alive.  The horse Woodrow could have whinnied, and it wouldn’t have surprised me.  It was real.  


The other kids from the class began gathering in the distance.  The scavenger hunt was apparently over.  


We were last, but we were the absolute, clear winners. 


I want to always win the way that these children do.  I want to meander through art and through life.  I want to see what is inside.  I want to take time to be curious, to look for the truth which is subtle and sometimes hidden away.   I want to see with eyes that see kindness and compassion, not competition.   I want to see what my daughter with Down Syndrome sees.




“Hey,”  said Mark, hopping on one foot as we walked back toward the waiting buses.  “Why did Stella call you Mom? Don’t you just work here?”  


Wow.  


I had just spent an hour with this kid, watching his courtesy, his open-mindedness, his wonder and his patience.  I saw his curiosity, his empathy, and his respect.   He was nine years old, and he was an outstanding human being.  


All that, and the little guy didn’t even know that I was her mother, watching over them.  


That is just what I always hoped that I would see.


29 Comments

She's in a Book!

11/12/2015

0 Comments

 
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Okay, I know it's not even Thanksgiving yet...  But this just arrived in the mail, and I wanted to share it.  Guideposts has published their 2015 Edition of  "The Joys of Christmas", and inside is a story about Stella!  We're so excited!  This was the big Christmas photo shoot that I wrote about in June.  A great big thank you to my editor, Daniel Kessel, and to Guideposts editor-in-chief, Edward Grinnan, who writes about his brother, Bobby, in the notes from the editor.  Also many thanks to David Bowman Photography for patiently taking pictures.  
 Thank you all for sharing in the Joys of Christmas with us!
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The Truth

9/15/2015

2 Comments

 
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Before my daughter was born with Down Syndrome, some people painted a grim and terrible picture of what my life would be like if such a thing happened.  

“Your life will never be the same!”  
“Your life will revolve around hospitals.”  
“You won’t have time for your other kids.”  
“You will always be sad and regretful of the things your child cannot do.”

Even after she was born, a geneticist at a specialty clinic upbraided me, using primitive scare tactics.  
“I know you like babies, but you will never want to have another baby after this one,” she said in an authoritative voice, towering over me in my daughter’s cardiology office.  “You will worry and agonize every moment of another pregnancy.  You’re old and your risks are high that this will happen to you again.”  

She said this to me as my small, almond-eyed daughter cooed softly in my arm, tightly gripping my finger and my heartstrings.  

Despite that doctor’s admonishments and scolding, a couple of years later, my daughter grew into a  glorious, curious toddler.  And I did get pregnant again.  On purpose. 

I was 39 years old.   

At that ultrasound appointment, the doctor examined my prenatal son’s body closely.  He measured limbs, organs, examined bone structure, checking all the typical markers for Down Syndrome.  

“You need to have a Triple Screen done,” he said.  “I don’t see results in your file.  You are considered a geriatric in the ob/gyn world, so you need to have that done.  The fetal matter is high risk for abnormalities.”  

Wait.  He had just told me I was having a son.  Why was he now calling my little man fetal matter and wanting tests for abnormalities?  

“Look.  I’m not afraid,” I said.  “I already have a child with Down Syndrome, and she’s not the least bit scary.  She’s wonderful and absolutely beloved.”

The doctor looked me in the eye for a moment.  He closed his file, stood up, and left the room without another word.

After he was gone, the young ultrasound technician leaned in toward me, with a confiding smile.

“I’m not allowed to say this in the office", she said in a hushed voice. "But I’m so happy for you!  My friend has a toddler with Down Syndrome, and he is full of love.  He has made their family’s life so rich and happy!  I know how much love your daughter brings.”

We chatted about babies and Down Syndrome for a few more minutes, quietly sharing the joy that we both knew well.  Babies with Down Syndrome are, like every baby, full of Love.  

As an expectant parent, you may feel afraid.  You will be tested, and categorized, and railroaded.  You will be counseled, scolded, and warned.  You may feel inept or not up to the task, or just plain stressed out, because all circumstances are not ideal.  But talk is talk.  Threats of doom are just threats.  You don’t have to go down that path of worry and fear.  Especially if your child shows some characteristic that seems unique, or challenging, or just plain scary… 

Don’t lose sight of the simple truth.   

Your life will change forever, because you will be filled with Love. 

When my daughter was about a month old, I was holding her in my arms, speaking to a friend.  A man in a suit, a stranger, approached me.  He was visiting from out of town, he said.   "My own son has Down Syndrome, too.  I miss him so much when I travel.  May I hold her, please?” he asked.  He cradled my baby close to his heart, then kissed her soft, peachy face.  Tears dripped down his cheek and into his beard.  “You have no idea of the Love that is in store for you,” he said, and walked away.  

He was right.  

You have no idea of the Love that is in store for you.  

That is the truth.

2 Comments

Gentle and Rare

7/15/2015

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“I see you have a child with Down Syndrome. (Snort) So how’s that goin’ for ya?”   

The woman waited for a response, looking at me with a snarky smile.  I took a deep, slow breath.  

How does one answer a question like this?

Was she hoping I would give her an inside scoop, gossip with a stranger about the difficulties of caring for a child with special needs?  Could she be serious?  

I know it’s easy to get defensive.  Maybe she wasn’t trying to be rude.  Maybe she really wanted to know. 

A lot of people want to know.

Children with Down Syndrome are just not seen much these days.  They are like an elusive, gentle, endangered Panda.  

Rare. 

“My daughter is doing really well, actually.”  I begin.  “She’s a gentle kid who loves to read.  She is one of the kindest people I’ve ever known.”

I smiled at the woman.  After a few more minutes of chatting, when she walked away, she smiled back.  

Only now, her smile was genuine.  

Today reminded me that life is not about confrontation.  It’s not about winning by lawmaking,  or by brute force, or even by being just rude.

We win this life one heart at a time, with gentleness.  With love.

Because when people care, it makes all the difference....

for both an endangered animal and for a child.
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A Special Hug

6/15/2015

2 Comments

 
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Before, I didn’t know.

Before my child was born with Down Syndrome, I never thought about what it meant to have a child that was Special.  Because all my kids were special.  Each one is unique, with his or her own talents, abilities and struggles.  They are all special.  But Stella is Special, with a capital S.  It’s a little something extra.

That extra chromosome has done something remarkable and different to her, that I never could have understood before I knew her.  One tiny extra chromosome has changed everything.  

Let me explain with a story.

One evening, when Stella was about two years old, our family visited a church that was not our own.  As presentations were made by speakers, Stella got a bit antsy, so I left the pew and stood in the back of the church to bounce her in my arms.  Maybe she would fall asleep, so I could hear the presentations and learn something.  I had a few stressors at the time, and could use a bit of a spiritual boost.  I was looking forward to this.

But Stella had another idea.  She wiggled and wriggled, trying energetically to get down, away from me.  In her deep, low voice, she started to repeat  “Dow.  Dowww!”  She emphatically wanted down, and she wasn’t about to be shushed.  I set her down on the floor, and she began ambling straight toward a man against the back wall.  I followed, trying to quietly corral her back in a corner where we could have a little personal space, and wouldn’t disturb anyone.  No way.  Stella persisted, and beelined as fast as she could, right up to the man.  

He was stern looking, bearded, and wearing old jeans.  Stella walked right up to him, and hugged his leg.  

“Sorry,” I mumbled, and sheepishly retrieved my child.  

For the next five or ten minutes, we repeated this scene.

People were starting to stare.  

Stella would yell at me to let her down, and right away, she’d run to the man, and hug his leg.

Soon she began to call “Uppa!  Uppa!”

The man looked bewildered.

“I’m sorry,” I stammered.  “She wants you to pick her up.”  

“Really?”  He looked surprised.  Then he leaned down, and held out his arms.  My little Stella embraced him, tightly wrapping her arms around his neck.

I stood right next to him, watching. 

Stella buried her face in his bearded neck, gently touching the back of his head with her small fingers.  She petted him, and rested.  A group of people watched Stella, no longer paying any attention to the speaker.  Everyone in the back of the crowded church was watching the toddler hugging the grizzled man.  

She rested for about ten minutes like that, nestled in his arms.  Loving him.

When the speaker finished whatever it was she was saying, the man gently handed my daughter back to me.

“Thank you,” he said, and walked away, into the starry night.  A tear glistened on his cheek.

After he left, a man and woman approached me.  “Do you know that man?” They asked. 

“No.”

“I am astonished that your daughter went up to him like that!”

“He’s the crankiest, grumpiest man!  He doesn’t talk to anyone, he always just stands in the back, scowling and waiting.”  

Before I knew Stella, I would have been surprised.  Perhaps embarrassed, even.  But not now.  Now I know Stella.  That little extra chromosome has given her a superpower, an ability to love others, unfiltered.  Unchained by manners, or propriety, or personal space issues.  Without words, without a presentation, or a speech…  With something as simple and uncomplicated as a hug, she helps people feel God’s love.  

And I am not surprised at all. 

Because now, I know.  

Sometimes Special comes with a capital “S”.  

2 Comments

Holding Her Hand

4/14/2015

1 Comment

 
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So, it happened again yesterday.  

I’m quite used to it now.
Ever since my child was born with Down Syndrome, I became Conspicuous.

We are no longer passed by on the street, unnoticed.  We stand out.  We are smiled at, hugged, patted on the arm, greeted warmly as if we are long lost friends, and welcomed.  We have also been frowned at, turned away from, and even cried to.  

People notice us.

Once, when Stella was only about three months old, she slept in her carseat next to me while we ate at a restaurant.  One of the employees began to wipe down tables near us, looking inquisitively in our direction.  She cleaned closer and closer, until at last, she walked right over to me, staring at my baby.

“What a beautiful baby you have there,” she began.

“Thank you.  She’s pretty new.”

“She is adorable.” The lady cooed at Stella, then her misty eyes began to drip.

“Is she very hard?” she asked.

“Excuse me?”

“Is she very difficult?  To take care of, I mean?”

“She’s quite easy going, actually.  She likes to be cuddled. She has been to doctors quite a lot, but she is pretty calm there, too.  She’s a content baby.”

The stranger then started to cry.  She explained to me how 50 years ago, when she was a very young mother, she had given birth to a child with Down Syndrome, also.  The people in her life and the doctor convinced her that the child would be too much work for her.  “Too many needs,” they said.  “They told me she was a big problem and that she would never function in the world and she would be a burden on me the rest of my life.  But you know what?”  The woman continued, “Not a day has gone by that my heart doesn’t break over her.  I wonder what she is doing, and what she would look like.  I wonder if she was ever happy.  She will be fifty years old this month.  They never even let me hold her before they took her away…”

I held this woman’s work-worn, wrinkled hand while she cried in the restaurant.  Then I placed Stella’s tiny hand in hers.  She held on, and my daughter’s hand became the link that somehow connected her to her own long-lost, beloved daughter.

When her tears had run dry, we hugged and parted ways.

“I wanted her.”  She said. “I always wanted her.  And I love her to this day.”

My own heart ached with this woman’s fifty years of hidden pain and regret.  I wish I could have said something to her, to support her way back when she was a young mother, afraid.  I wish I could have put her baby’s hand in hers, and helped her give and receive the Love that her child brought.  The Love that they both needed to be happy.  My heart aches with compassion for her and all Mothers like her, those who hold on to pain and heartbreak instead of small hands.

I am a very Conspicuous Mother, noticed and confided in where ever I go, holding my child’s hand.  And I promise you that Mothers love their children forever, no matter what.

I am so grateful to have this small hand to hold.  

1 Comment

Got Joy?

3/21/2015

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It's World Down Syndrome Day, 3 - 21.  Love, joy, and peace to you!
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Friday Funnies

2/27/2015

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Cartooning at downsideups.com today...  Click to visit me there.
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Friday Funnies

2/20/2015

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It's Friday... I'm at downsideups.com!  Come and visit : )_
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Friday Funnies

1/23/2015

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It's Friday!  That means I'm cartooning at Down Side Ups... click the image to see today's comic.
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Friday Funnies at Down Side Ups

1/16/2015

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I cartoon blog at downsideups.com on Fridays.  Come visit us!
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Friday Funnies at Down Side Ups

1/9/2015

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There's a baptism at downsidesups.com ...
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Friday Funnies at Down Side Ups

12/11/2014

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I blog at downsideups.com on Fridays...  Click on the picture to see today's 'toons!_
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NICU Christmas  

12/9/2014

2 Comments

 
This was one of my first blog posts....  Happy Getting Ready for Christmas!
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Christmas Eve.  

Snowflakes swirled softly, descending on a peaceful scene of Mary, Joseph, and newborn Jesus, cradled in a manger.  Peace and serenity reigned there in the snow globe, on the shelf.  But that was just a snow globe.  I turned away.  Lights flashed, blinking Christmasy red, green, blue, yellow.  These lights emanated not from a Christmas tree, but from a heart monitor, I.V. drip, bili blanket, feeding tube, oxygen tent.  My newborn baby laid in the neonatal intensive care unit of a downtown hospital, cradled in an incubator.  Rather than peppermint and gingerbread, I smelled only my own fear.

 We named her Stella Lucille.  Born just a few days earlier, her name meant “Star Light,” for the star of Bethlehem that showed the wise men the way to Jesus.  But our little star couldn’t breathe or eat on her own.  I held her flaccid, tiny body in my arms, after her birth.  Though she was swaddled in a warm blanket, her head flopped back like a rag doll.  She was cold, so cold.  Her fingers and mouth slowly turned purple, then blue.  Within minutes, a small army of specialists and nurses had whisked her away from me.  We now knew that she had three holes in her heart, and Down Syndrome.  

Merry Christmas, right?  My other small children waited for me at home.  We’d planned it all out, this baby was the biggest, most exciting Christmas present for our family.  Everyone waited for her.  There was a dolly cradle under the Christmas tree, where we’d planned to lay our newborn for a Christmas family photo. We would light the candles in our Advent wreath, sing carols by the warm glow of candlelight and Christmas tree lights, and celebrate the births of baby Jesus and baby Stella.  Then, off to Christmas Eve Mass with my extended family.  After Mass, we had planned to crowd into Grandma’s house with all the relatives, eat Christmas dinner, and enjoy the celebration with cousins, aunts, uncles and siblings until late into the night.   Even an old family friend would make his annual Santa Claus appearance, after supper.  He’d come in his stuffed red velvet suit, bells jingling, handing out gifts to all the children, laughing his Ho Ho Ho’s, calling each child by name and surprising them with the tidbits and details he knew about their antics.  This was how we wanted Christmas to be.    

But, Stella wasn’t coming home.  I had been discharged from the hospital that morning, but I couldn’t bear to go home without her.  Like Santa, I wore my own whale-sized, post partum velvety green Christmas outfit.   My other children waited for me.  But I didn’t go home for the family photo.  The cradle under the tree remained empty, and my heart remained filled with fear.  My husband arrived, the nurses assured me my baby would be safe and cared for.  But I just couldn’t do it.  I just couldn’t leave my helpless, weak daughter alone without someone watching over her.  

“The other kids need you,” coaxed my husband, Doug.  “We have just a little more time here, then you have to leave, for their sake.”  

My heart felt torn in pieces.  I caressed Stella’s soft exposed arm with my finger.  

“God,” I prayed silently.  “help me to trust you with her.”

Doug gently loosened my fingers on my baby’s arm.  “It’s time.”

My tears welled up inside, as Doug escorted me out of the NICU.  The fear of the unknown, the fear of abandoning her when she needed me, the fear of being abandoned by God surged in my heart, threatening to burst through as we approached the hospital’s security exit door.  I forced my legs forward.  “God!  Send an angel to help me through that door!”  I pleaded.

Doug’s hand rose to push the locked handle, when suddenly, a familiar, smiling face loomed close on the other side, peering through the window into the unit.  Startled, we opened the door to find our very own Santa Claus, standing sheepishly in the hall with his wife.  “I don’t want to intrude on your privacy,” he began, “But I came to see Stella so I could tell your other kids that Stella got the first present on Christmas Eve.”  

How quickly God can turn our sorrows to joy.  “Come and see her!  You’ll be her first visitor ever.” My smile was genuine, and we ushered Santa back to the NICU.

“Family only.”  The nurse at the desk arched her eyebrow at us.

“That’s all right, I’m his brother!” Santa replied, patting my husband on the back.

“Oh, I’m so glad!” the nurse smiled.  “Welcome, Santa!”

“Ho, Ho Ho!” Santa chuckled, as we magically walked back through the doors.

Once inside the NICU, he sat in the rocker, next to her incubator, whispering hushed Christmas secrets that only Stella and Santa could share.  Catching a glimpse of the snow globe behind them, I beamed.  In sharing the joy of her birth with Santa and his wife, a bond was forming.  A bond of trust between God, who answered my prayer, and Stella, a child who never would be alone.  

God had sent me his angel for whom I prayed, dressed up as Santa Claus on Christmas Eve.  I began to realize that even though the circumstances were grim, even when nothing goes as we planned it, and we feel abandoned and alone, God is still with us.  He watches over us, and He has a plan.  

A little later, we left the hospital.  Real-life snowflakes swirled, softly descending on Doug and me as we made our way through the starlit parking lot.  The hush of a Silent Night surrounded us, enclosing our family in a circle of trust, just like that snow globe.  Peace and serenity grew in my heart, like the newborn faith I felt.  I was ready to celebrate Christmas Mass with my family.

Stella Lucille, our little star of Bethlehem, began to lead us on a journey toward trusting God.  She truly was our family’s best Christmas gift, though perhaps not in the way we, ourselves, had planned.  

And that Christmas Eve night, when I felt so afraid and alone, God sent Santa Claus to help us find our way.
2 Comments

Friday Comics at Down Side Ups:  It is Time!

12/5/2014

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Click on the picture to see this week's comic at Down Side Ups.
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Friday Funnies!

11/14/2014

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Down Side Ups!  The Holidays are Coming
Check out the latest Down Side Ups cartoon...  
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Back to Work:  One Small Kindness at a Time

11/10/2014

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Hey, everybody.   It’s Monday!

The elections are over… Time to get back to work.

Let’s work together to make this country, and this world, a better place for everyone.  

We can do that, even if it is just for one person at a time.  

We can do that together.  

I am so inspired by this quote from the beloved Dr. Seuss:

“To the world you may be one person; but to one person you may be the world.”

When Stella came home from the hospital, she was small enough to fit into her sisters’ doll clothes.  And oh, boy, did her older sisters like that!  Skip the preemie clothes.  Baby Stella wore ball gowns and little prairie dresses and ethnic dresses…  She like being held and cuddled so much.  It became a moment of bonding for all the little sisters.    She was the littlest one in the family, but she had such a big impact!  Her smiles were contagious.  Her joy in the attention of her sisters warmed their hearts.   She loved them right back.  
And our lives were never the same again.

So go ahead, choose a person.  Make today better, even if it is for just that one person.  Give them a hug or a smile.  One kind word can travel a long way.

You could perhaps change someone’s day, their outlook, the way that they treat their children or employees.  

The ripple effects of your kindness could indeed change the whole world.  

Gently… One small, tiny kindness at a time.


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Happy Friday!  Meet the Family at Down Side Ups!

11/6/2014

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Friday comics are posted at 
Down Side Ups!   
Click here to Meet the Family
http://www.downsideups.com/weekly-comics
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Down Side Ups  

10/30/2014

2 Comments

 
Hey All!  Here is a brand new comic I've created.  It's about a family who (surprise!) has a baby with Down Syndrome.  You might recognize some of the characters....ahem.  Yes, totally inspired by people I know.  I plan to post this once a week.  Friday Fun Day! 
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2 Comments

Breakfast, Anyone?

10/27/2014

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Stella loves a good party.  One recent morning, I woke up, stumbled into the kitchen to make coffee, and found this.  

She had the table all set for seventeen (count ‘em), and the pancake mix was out on the countertop with a bowl.  

“Pancake party, Mom? Chocolate chip pancakes?”

It was six a.m. on a Saturday.

I hoped no one was really coming.  

“Are you hungry, Stella?”

“Yeah.”

“Do you want me to make chocolate chip pancakes just for you?  There’s no party.  Only eight of us today.” I said. "And everyone's still sleeping."

“No.  It’s a party!” she insisted.

She’s always loved parties.  If she gained a year for every time we’ve sung “Happy Birthday, dear Stella” then she’d be in her eighties.  When she was little, we used to pull out little birthday candles and put them in anything, anytime, just because her happiness and delight was so sincere and contagious.  When she asked, we adorned muffins, pancakes, even mashed potatoes.  Once we were at our favorite Vietnamese restaurant, and Stell told the owner it was her birthday.  So with much pomp and circumstance, they served up a plate of sticky rice, formed into a cake, glowing with a candle atop.  She was ecstatic.  The entire restaurant joined in the singing.  Her little brother did get a bit jealous with all Stella’s birthdays, but he’s come around.  She’s initiated many impromptu parties for him, too.  Her surprise and joy cast a tone of happiness into each day.   Why shouldn’t we celebrate a person we love, whenever we want to?

“Today is your birthday, Mom.”  She smiles, caressing my cheek.  “Happy Birthday to you!” 

Thank God for paper plates.

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Hi!

10/14/2014

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Thank you for visiting my blog today!  I am amazed by the flood of interest and support for my post about Stella.  I will write more about her joyful life soon.  Thank you.  In the meantime, I have been busy with the boys.  The week started out innocently enough.  
A boy with a shovel and a dream.  
He wanted to build a hobbit house.  He and his pals have been very industrious.  There is now a fort, some semblance of hobbit house with a round green sled for a door, and a full (albeit very shallow) army trench dug into our yard.  Thankfully, not right in the front!  I am infinitely grateful that they are not playing video games, and I'm willing to have full-scale boy construction to get that.   What could be better on a warm autumn day?  The leaves are falling, oatmeal cookies are cooling on the countertop.
And the boys have shovels.
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I Love You

10/13/2014

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Here is Stella, signing “I love you”.  

If I had caught a glimpse of this girl nine years ago, I wouldn’t have been afraid.
If I had known then that her favorite words of all would be “I love you” 
then I wouldn’t have listened to what anyone else had to say. 

When the geneticist told me about all the “Fifty markers of Down Syndrome” and the myriad of potential health problems, I was scared.  When they announced the words “mental retardation” and “three holes in her heart”, I was terrified.  What did that even mean?  

A rather patient pulmonologist drew me a picture of the chambers of the heart.  He tried to fill me in on the high school biology I should have remembered in the middle of the night in the Neonatal Intensive Care Unit.  Understanding the heart as a simple mechanical muscle was easy, according to him.  He also said they could fix the holes. 

But what about “mental retardation?”  What does that mean?  As I thought about it, I realized it was much easier to contemplate “giftedness” and “deficits”.  Because I like visual things, I drew myself some charts, which included headings such as Social, Intellectual, Creative, Spiritual, Financial.
I also included ideals I valued, like Love, Joy, Peace, Patience, Kindness, Gentleness.

You get the idea.  Then I started filling people’s names into my chart.  For example, Alfred is a creative genius, but is financially deficient.  Betty is spiritually gifted, but socially inept.  Carla is intellectually superior, but awfully unkind.  See how I changed their names, so they can live on in blissful ignorance?  I’m so intellectual.

The next day, I cornered a cardiologist. 

“Who says being intelligent is any more important than being creative? Why do you think being intelligent has more value than being spiritual?  How can you tell me that having a high IQ is better than having much joy?” 

I surprised that poor cardiologist.  She responded with a get-back-in-line attitude.  “I have spent my entire career helping those with physical disabilities and weaknesses to live a full life.  And I have known many intelligent people who have a disability in kindness, or a disability in finding joy.”  She may also have said “So back off, Mama!” but I’m not sure.

As Stella grew, the holes in her heart began to heal.  The big one closed, all by itself.
As Stella grew, the deficits in my own heart began to heal, as well, but not all by themselves.  I needed Stella to help me.  Stella is peaceful, kind, gentle, loving and joyful, all those ideals I valued.  She is not so good at math, or at tying her shoes.  But she is teaching me to become patient, because I have always stunk at that. It was my heart that needed healing, actually.  
And Stella is the one who is the genius in healing hearts.  








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toys and food

10/10/2014

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Toys are fun.  Food is fun.  So they go together!

When Stella was about four, she decided that since toys and food both made her happy, they belonged together.  Many days, when we opened our fridge, we were greeted by small plastic figures sticking out of the food.  

The David and Goliath characters liked cupcakes.  They were often found, buried head first in the muffins.  Pongo, the daddy dalmation, lived in the milk cartons.  When someone tried to pour milk on their cereal, an inevitable “PLOP” was heard, and there was Pongo, swimming in the bowl.  He was just the right size for her to fit into the cartons.  We’d wash him off, put him back in the toy box, and find him in the milk again the next day.  For months on end.

Want some yogurt?  Surprise!  It’s full of Little People, looking up at you.  

The trend caught on.  Then-tween Genius Child made lunch for the little ones when I was gone to one of our bajillion doctors’ appointments.  

She made refried beans.

But you know what she did?  She emptied two cans of beans and sculpted them into a volcano shape.  Melted cheddar oozed down the sides of the mountain, and a pool of molten salsa filled the cavity inside.  An army of plastic dinosaurs marched up and down, oblivious to their dangerous proximity to the lava.

The entire mountainside (sans dinos) was devoured by the toddlers.  A mountain of beans.  

So there you have it;  lesson learned.  Even beans can be exciting!  

Now go play with your food. 




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My sister, my friend

10/1/2014

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Never underestimate the power of a sibling.  
That Someone is near you for some very important years... you laughed together, you played together, you ate together, you even fought and cried together sometimes.  You explored, had adventures, and got in trouble together.    And somehow, now that you are all grown up and moved away, you miss them with an ache in your heart that can't be filled by anyone else.  
Go ahead, call her!  
Text him.   
You fill that same spot in his heart because you went through that wondrous and awesome journey of childhood together, elbowing each other the whole way.  
Remind him that he is loved, and has been loved, 
all the way from the very beginning.
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Daddy's Girl

9/29/2014

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Yes.  She's Daddy's Girl.  
She loves her Dad more than anyone in the universe.
When she was about 5, she took ballpoint pens and a sharpie marker, and drew lines and criss crosses all over her dollies.  
"Stella!  What did you do?! "  I moaned.  Her great-aunt had made this one, especially for her.  And now literally EVERY doll in the house was colored on.

"Just like Daddy."  Stella said, quietly smiling.  "Tattoo just like my Daddy."


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