I Love You Body and Soul

david, finding beauty By September 13, 2016 43 Comments

At the cellular level, every bit of David’s body has been affected by a chromosomal abnormality. It isn’t the way it’s supposed to be. The coordinates on the map are incorrectly labeled. The recipe has all the ingredients but in the wrong amounts. The computer coding has a typo and the program won’t run correctly. When David was born we saw his left hand had only two fingers. It was the first indication David had a genetic disorder. His body is broken, imperfect, flawed. His soul on the other hand, is intact and whole. We are two parts, body and soul. His soul resides in a body that simply doesn’t cooperate because it can’t. His soul fights every day to live fully.

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Before David was born, before I was married even, I taught with kids in wheelchairs, kids with g-tubes, kids who were non-verbal, kids with autism. I worked with special needs kids, or I should say, I worked with typical kids trapped inside bodies with special needs. Every day they arrived at school at 8:30am, every day they left at 2:40pm and in between we lived life together; learning, growing and connecting. I knew each of my students well. I knew their physical needs and quirks, their preferences and personalities. I knew their souls and they knew mine.

When two people truly connect on a soul level it’s a kind of miracle. It’s much deeper than a physical connection. It takes time and energy. It takes patience and quiet. It’s a soul to soul, heart to heart connection. It’s the way an expectant mother bonds with her child before he’s born. It’s the way we can’t stop thinking about a friend–so we call up her up only to find out she really needed words of encouragement at that very moment. It’s a deep knowing cultivated over time. I can’t explain it, but if you’ve experienced it, you know exactly what I’m talking about.

We may be tempted to say the body doesn’t matter. The body is broken—who cares?! It’s the soul that truly makes us who we are. And yes, in part, this is true. But the body does matter. The body carries the soul. The body breathes and speaks and sings and moves. The body is the outward representation of the soul. The body works on our behalf to make our soul known. A soul needs a body and a body needs a soul. So we care for our bodies. We walk and run and try to eat healthy food. We brush our teeth and see doctors and have surgery to repair a heart defect. We buy clothes that fit and have our hair trimmed. We honor the soul by caring for the body.

Yesterday David worked on feeding himself. He carefully lifted a spoonful of lemon yogurt to his mouth, took a bite and placed the spoon back into the bowl. He isn’t able to scoop up another bite, so I do that part for him. Again and again, I fill the spoon, again and again he lifts it to his mouth and places it back into the bowl. Over months and years of working on this skill David continues to improve.

And we celebrate! Because David’s amazing, stubborn, beautiful soul is winning over a body that doesn’t work right. We celebrate because it’s a HUGE accomplishment. No, eating a spoonful of yogurt isn’t a huge accomplishment for most 14-year-old boys, but for this kiddo, who lives inside a body that doesn’t cooperate, it’s massive. It deserves shouts of delights and high-fives.

While my hands are clapping and I cheer for his success, a tear slips down my cheek. This sucks. I hate that my son has to fight moment by moment to live a full life with a body that fights against him. I hate that he has to work harder than most kids to communicate and eat and walk and sometimes just to breath. I hate that he sees seven different medical specialists. I hate that he’s had multiple surgeries and will likely have many more. I hate there are times he comes up beside me and takes my hand, looks at me with an intent gaze while he stomps his foot, hoping I’ll know what he wants. I offer him a snack and see the frustration cross his face. He stomps more and pulls on my arm. I offer him a cuddle and he pushes me away. I hate that he can’t tell me what he wants and I hate that sometimes I can’t read his soul well enough to guess.

But that soul. I love that soul. And I love that broken, imperfect, adorable body that holds his beautiful soul. A love that is deeper because our souls have struggled and grieved and found hope together.

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Today I will put this necklace around my neck as a reminder of the love between his soul and mine. He is part of my tribe. He is my safe place and my love. I will do my best to care for his physical needs with patience and tenderness. I’ll help him scoop up spoonfuls of food again and again. I’ll help him put on his pants and button his shirt. I’ll cuddle him and kiss him. In return he will smile at me making my heart do flip flops. He will take my hand and show me what he wants. He will teach me how to be grateful. He will teach me to notice the beauty all around me. He will move through the day with bravery and determination. He will inspire others and spread joy to all who know him.

His soul knows mine and my soul knows his. And at the end of the day, we are both souls living inside imperfect, broken bodies. Not just David, but me as well. And someday I know it won’t be this hard. Someday all with be made right and our bodies will be made whole. Someday heaven will come. Today we find beauty in this moment, hope for tomorrow and a deep love between our souls.

Have you experienced a soul connection?

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Honoring the Pain

david, hope, the meaning behind By August 30, 2016 44 Comments

David was four days old and asleep inside his little bed in the Neonatal Intensive Care Unit {NICU}. An adorable blue plaid baby quilt my sister made was draped over the side and a paper tag with David’s name written in cute, happy lettering was taped to the edge. His weight had dropped since birth a few days earlier and he was down to 3 pounds, 12 ounces. We had been told he had a rare genetic disorder but a million questions loomed in the air. We were in shock. We’d been expecting a healthy baby and everything had gone wrong. Both Steve and I were walking around in a daze. Steve sat near David and I stepped outside the NICU with a folder of bills and the checkbook. Even in crisis, real life demands to be lived. Bills have to be paid. Cars need gas. Clothes have to be washed, dried and folded. Well, maybe they don’t have to be folded. It’s surreal to do normal, everyday tasks while you’re world is crumbling around you. I remember clearly, sitting in the lobby right outside the NICU, opening the folder to pay bills and thinking, “This is so strange. Who cares about the gas bill? My baby was born with two fingers on his left hand.”

As I wrote the first check and tucked inside the envelope, our friends Josh and Maggie walked into the lobby. In the early years of our marriage they were our upstairs neighbors, worked in ministry with us and were some of our closest friends. They spent time with us during hospital stay. They brought groceries and arranged meals. On this afternoon, when our tiny David was only a few days old they sat down with me on the uncomfortable lobby couch and said nothing. They just sat, no words. I set the bills aside, buried my head in my hands and began to sob. The tears came from a bottomless well inside me. As I gave into the grief I wondered if I would ever stop crying. I held the pain in all its unbearable heaviness.  They sat with me, their arms around me and cried with me. They were powerless to change the situation but they stepped inside the darkness with me. I wasn’t alone.

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Pain demands to be felt. It won’t be rushed. It won’t be pushed away or minimized. There is no set timeline for grief. There is no bible verse or life truth that can lessen pain’s grip. No matter how much we may try to push it away or pretend it isn’t there, it manifests itself. There are no tricks or tips to lessening the agony. Pain is moving through darkness, one tiny step at a time with faith that eventually a ray of light will break through. We honor our pain with tears and time. We honor our pain by acknowledging its heaviness and hurt. We honor it by recognizing loss and the hole it leaves behind.

love and loss rings lisa leonard

We honor pain by allowing it to wash over us like a tidal wave, and in its own time it recedes a bit. That first ray of light breaking through the darkness is fresh air and we breath it in as deeply as we can. We breath in hope. And hope is the balm that soothes the pain. Just as we can’t expedite pain, hope also won’t be rushed. It comes in its own time. It comes as we honor the pain.

When Josh and Maggie cried with me they honored my pain. They honored our tiny baby David and the difficult road ahead of him. They honored broken hearts and lost dreams. They didn’t minimize the journey before us with advice or easy answers. They loved him exactly as he was—a whole soul inside a broken body. And they breathed in deeply with us as the first ray of light broke through the darkness.

Are you honoring the pain of a difficult situation right now? Are you walking with someone through pain?

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hello birthday!

david, family By July 4, 2016 1 Comment

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We spent the weekend with cousins and had so much fun. David officially turns 14 today {although we celebrated last night}. So much to celebrate! How about some hellos?

Hello birthday boy! Fourteen sounds like an absolutely crazy number in this context.

Hello saying goodbye to cousins. It’s been wonderful to talk, laugh and be silly.

Hello Instax Share printer. I printed the above pics from my cell phone. We are loving it.

Hello getting back into a routine after France and family time.

Hello pics to edit and share. There was so much beauty in France!

Hello sister time. I’m craving some {without the kids so we can finish sentences uninterrupted!}

Hello looking for a new book to read.

Hello new noisy toys from David’s birthday.

Hello lazy morning and summer days. Some of my favorite things.

Hello last day of the S A L E.

Hello to you! What are you saying hello to this week?

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David turns 14!

david By July 1, 2016 27 Comments

David you’re turning fourteen. I can hardly believe it! It seems like just yesterday we were holding our tiny baby and wondering what life would hold for you, for us and for our family. In those early days there were many tears.

We couldn’t imagine the joy waiting for us.
We couldn’t imagine the things you would teach us.
We couldn’t imagine the way our hearts would grow and change.
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In Paris, you took your dad’s hand and led him up the steps to the Sacre Coeur Cathedral. Your determination gives you power. Without words you speak your mind and reveal your heart. You are learning and changing. Your world is expanding every day. And watching your world expand makes my heart want to burst. I am so proud of you!

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Your smile lights up the room. It chases away shadows and replaces them with hope.

You share your love without reservation. Many times people have told me that when you put your arms around their neck they felt loved and seen. You have a sense for who needs encouragement and boldly meet them there. People respond to you. It’s beautiful to watch.

You make music. The little tunes you tap out flow our of your soul and fill the room. You are passionate about music–I love to watch you concentrate. You don’t just hear the music, you feel it too.

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You’re turning fourteen.
You are small in size but you’re a big presence.
You make the world a better place.
You show us that life isn’t easy but it’s beautiful.
You make every day a celebration.
You make every activity an adventure.
You inspire me to greet each day with joy and an open heart.

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David I am honored to be your mom. I love you from the tips of my toes to the top of my head. Happy birthday!

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the most important thing

david, finding love, the meaning behind the jewelry By March 8, 2016 66 Comments

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We were nervous, but felt mostly ready to have our first baby. Toward the end of my pregnancy, we had tiny clothes, washed, folded and tucked into drawers. We had a crib with cozy, blue plaid bedding. We had a stroller and carseat ready to go. At my 38 week prenatal appointment, everything in our world was about to be turned upside down. We were most definitely not ready for what was about to happen.

Our routine visit began with an ultrasound. I could see the puzzled look on our doctor’s face. There were long pauses, note taking, comparing notes, checking and double checking, and then the question, “Are you sure we have the due date right? The baby’s measuring small. “

I was absolutely certain we had the due date correct. His words rung in my ears. I’d been careful to plan out the details as we prepared for our baby’s birth, but somehow I hadn’t worried about the right thing. Not that worrying would have changed one single thing. Something was wrong with our baby.

The next days were filled with a visit to the specialist, being admitted to the hospital, tears, worry and waiting. On July 4, 2002 our David was born. He was 4lbs, 2oz, had a full head of hair, a button nose, only two fingers on his left hand and a massive heart defect.

All of a sudden we had a lot of questions.

Will David survive?

Did I do something that caused this syndrome?

Will our friends and family accept our new baby?

Will we ever experience joy again?

We felt out of control. We were out of control.

On July 11, when David was seven days old, we sat down with a geneticist to discuss his diagnosis. We were new parents with broken hearts. We were at the beginning of one of the hardest parts of our journey. The geneticist could have shared meaningful statistics or current research to answer our questions. Instead he gave us deep wisdom into how to parent our new baby.

What did we do wrong?

What will David’s life look like?

How severely is our son affected by this syndrome?

Will David be okay? Are we going to be okay? What do we do next?

He calmly met our eyes. He spoke tender words with profound truth. “You’ll just have to get to know David to find out who he is.” He told us it was impossible to say how David’s life look. If we had a typical child, he couldn’t tell us how intelligent, creative, determined or successful he would be. His advice was to love our son, just the way he was, right at that moment.

Of all the questions, it really came down to one, foundational question.

“Will you love him as he is?”

We weren’t in control of the events leading up to David’s birth. We had no idea what the future held. But we were given the best, most important advice any parent can receive.

The most important advice any person can receive.

Love.

Love him just the way he is.

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In the midst of all the questions and worry, we had the one thing we needed most. Love. And amazingly, this tiny baby was about to teach us how to love more deeply and more purely than we ever imagined.

Sitting in a hospital waiting room, talking to a geneticist, we learned one of life’s most important lessons. And although we’ve grown a lot, it’s a lesson we’re still learning.

The most important thing is love.

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what a pity

david, the meaning behind the jewelry By March 3, 2016 88 Comments
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Last week at the grocery store I made eye contact with the woman behind me. She glanced at David with sad eyes, then looked back at me and shook her head. She saw his small hand with only two fingers. She heard him vocalizing sounds that didn’t form words. She could tell he had a disability.

Pity. That’s what she felt for David. Her face spoke a thousand words. I fought back the stinging tears and tried to swallow the lump in my throat. I turned around, pulled my shoulders back and stood up straighter. I looked at David and focused on the mischievous twinkle in his eye and the sweet smile on his lips. I took a moment and soaked him in.

If worth is measured by academic achievement and college degrees, we have a very sad situation.
If value is determined by dollars in your bank account or the car you drive, we have reason to worry.
If quality of life is based on athletic ability or the physical beauty, David is excluded.
But, if worth is determined by a loving God who knows you by name, then we have hope.
So much hope.
If value is measured belly laughs that begin in your toes, and pure joy that radiates from your soul, then we are rich.
If quality of life is based hugs and kisses and cuddles, then we certainly don’t need pity. We have everything we need.

Yes, David’s body is broken–he has a disability. There are many things in life he will never accomplish. But those things don’t determine his worth or value.
His heart is whole. His soul is strong and powerful. He freely gives and receives love. When I look at him, I feel no pity. When I look at him, I’m overcome with admiration. Then I take him in my arms and squeeze him as tightly as I can.
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this little hand

david, finding love By February 23, 2016 22 Comments

This little hand was the first tangible sign that things were not as we expected.

This little hand, with only two little fingers, made my heart hurt and worry about the days ahead.

This little hand represented a syndrome and questions and the end of dreams I’d been dreaming for my tiny baby.

This little hand softly touches mine and reminds me true beauty comes from within.

This little hand is teaching me perfection isn’t the goal, love is the goal.

This little hand is connected to this little body. A body that runs and explores and cuddles close to mine.

This little body that has fought hard to overcome illness and disorder.

This little body holds the heart of my child. A heart that loves deeply. A heart that laughs with joy. A heart that doesn’t worry about tomorrow but finds beauty in this moment. A heart so big and powerful that it has helped heal my own. A heart that has taught me how to love better and more purely.

I wouldn’t change this little hand because it’s part of the story that has brought us to today.

And today holds amazing, wonderful things.

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a little bit of joy to suprise the day that changed everything

david, inspiration By January 7, 2016 73 Comments

At some point in each person’s life, pain shows up. That’s the day everything changes. What was true one moment is gone the next. The path turns sharply in an unexpected direction. It’s disorienting, unfamiliar terrain.

When it happened to me, I knew in the depth of my soul, things were broken and would never be the same again. The pain, in all its heavy darkness would be with me for the rest of my life. Instead of the happy, healthy baby I imagined, our son was born with a severe disability and a body that didn’t work correctly. The joy of anticipating our son turned to grief as they hooked him up to monitors and tubes.

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But slowly, as I started to accept it, the pain became part of me. It was still there but it wasn’t quite as heavy.  I loved cuddling with David and feeling his soft breath as he cuddled into my shoulder. And that first smile when he was three months old was like wind behind me–moving me forward. Each footstep didn’t feel so exhausting.

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Then, to my surprise, a little bit of joy peeked through the clouds, like ray of sunshine. I wasn’t expecting it and I almost felt guilty. It must be a fluke, right? A little accidental joy. But little by little joy showed herself. The pain was still there, it’s there today, it’s part of me and part of my journey. But the pain has allowed me to feel joy in a new, fresh way that I couldn’t before. The pain helps me appreciate the joy. The pain makes the joy much, much sweeter. The day that pain showed up, it changed everything.
And in it’s crazy, mixed up way, the brokenness of pain is making me more whole.

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Every morning I slip the sunburst ring on my finger as a reminder.

Has joy started to peek it’s head through the clouds in your journey? I’d love to hear.

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hello olympian

david, hello monday By May 4, 2015 16 Comments

Last week David participated in the Special Olympics here in San Luis Obispo. He rocked the 25m assisted walk and was pretty exhausted by the time the Softball Throw came around. We had such a fun day and I have lots of pics to share with you! How about some hellos for a brand new week?

***Hello Monday is where I greet the new week with an open heart and a fresh perspective. It’s a new beginning–and there’s so much to be thankful for! Join me by leaving your own hellos in the comments section or linking up a hello monday post there!***

Hello torch bearer! David was a torch bearer in the opening ceremonies. And he was adorable!

Hello exploring before his events. So much to see!

 Hello going from Impossible to I’m possible. Awesome.

Hello to one of the sweetest teachers on the planet!

Hello getting a fire helmet and chatting with the firemen.

And hello sitting on the fire truck!

Hello pep talk from Dad before the event.

Hello ready, set, GO!

Hello silver medal winner!

Hello working in the Dominican Republic this week.

Hello lots to do and plan and design.

Hello hard-working Dominican team. They rock!

Hello jet lag and catching up on email.

Hello sipping some of the best coffee in the world.

Hello missing my boys.

Hello sunshine, ocean waves and mango.

Hello to YOU! What are you saying hello to this week? It’s a brand new week with beauty to be found.  Leave some hellos in the comments or link your own hello monday post there.

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investing in love

david, finding love By January 31, 2015 No Comments

The fall mornings are always chilly even though after a couple hours the sun comes out to warm everything. Before we leave the house, I pull a warm vest around David and strap him snuggly into his car seat. As we arrive at school, I slide open the van door, give him a kiss on the cheek and lift him from the car.

David has special needs. He was born with a rare genetic disorder called Cornelia de Lange. Because of his syndrome, he doesn’t use words to communicate, he has only two fingers on his left hand and he depends on us to feed and diaper him. David is very relational and loves to cuddle and hug—but he is cautious with new people. At times he voids eye contact and prefers to play alone.

At the beginning of the school year, he took hesitant steps toward the classroom, pulling on my hand and trying to slow my pace. It was a new school with new faces to get to know. Every morning, his teacher would bend down and with a big smile on her face, and welcome David to school. For weeks it went like this, hesitant steps culminating in a warm welcome and a fairly disinterested David.

But she persisted. She showed love and kindness to David. She invested in him…

I’m sharing at {in}courage today. Hop over to read the rest of the post. 

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