Chasing the Sun

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In the dark tomb of fear,
Waiting for light of day,
The dark chill whispers; waiting
For mercy to appear.

Sing me a night song
Until it is daylight,
Hum to me hope
This night is so long.

Faith never waning,
For you I will wait,
Redemption in the mourning,
Roll the rock away.

Black fades to grey
A tapestry of dawn
The glow of sun is coming
Night turns to day.

Night flees without a trace
The sun rises boldly
Trickling water to a river
It tastes like Grace.

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A New Reality

 


Elysecloseup

 

Its not often that I’m without words, but recently I have felt quiet and contemplative. The two words that have been on my lips most, are a diagnosis I struggle to pronounce, let alone understand: Juvenile Dermatomyositis (JDM).

These last few days since we’ve been home have felt like I’m underwater holding my breath. The same house, the same rituals and to do’s, the same family, but a very different reality.

I’m preparing myself to emerge back into the world with Elyse. It almost feels like when we introduced her to the world as a newborn, watching her every move with careful optimism, wanting to keep her within arms reach.

When you see her it might seem like you’re meeting any 18 month old toddler, her belly pooched out as she marches with a proud waddle. She makes one word declarations, wearing the world on her face with exaggerated expressions. When you see her, she’ll probably say “Hi” three times with her wide smile. You’ll notice her face is fuller and less blotchy,  her big wide eyes reflecting her enthusiasm, the shadows beneath them hint at tiredness . She might make wide circles around you, gaining momentum and confidence with each step as she clucks and coos with glee.

In these moments we get to celebrate life with her as it should be, an energetic baby enjoying and exploring the world around her.

hospital

At home we also deal with another, new reality.

Each morning and evening we give her Prednisone, a steroid with undesirable side effects such as insomnia, weight gain, aggression, blood sugar changes, osteoporosis, and stomach upset. To counteract unwanted effects we give her Calcium, Vitamin D and Zantac. Prednisone suppresses her immune system so we have to protect her from being exposed to unwanted cooties- meaning avoiding crowded enclosed places or large groups of children. 

Because the sun can worsen the effects of JDM we need to avoid the sun during peak hours, and be vigilant about protection. E is embracing the hat as her new accessory.

Elysehat

Once a week, we give her a shot that is a chemotherapy drug called Methotrexate. We have to wear gloves to avoid contact with the very liquid that we inject into our baby’s skin. This is designed to work with the cortisteroid to quiet the overactive immune response that is attacking her skin and muscles .

The needle is tiny and the dose is very small.  Though difficult, we agree these are the steps we need to take right now. After 30 minutes of practicing on fake plastic skin, Nate played the brave daddy and gave her the first injection (I played the pregnant for 9 months card).

nateandehospital

Once a month we will go to the hospital for Elyse to receive a 6 hour IV drip of Intravenous Immune Globin (IVIG) which is a lot like a blood transfusion, but IVIG is made up of the plasma of up to 15,000 blood donors. Our nurse calls it liquid gold. I keep telling Elyse that it makes her sparkle.

E gets to play with a Physical Therapist twice a week until she rebuilds muscle strength and mobility, She thinks its pretty cool to have a personal trainer that gives her undivided attention, and beach balls.

E will have good moments, and moments when she is uncomfortable and fatigued. We hope the good days will be more and more. 

We’re still taking time to absorb our new reality; to figure out how our lives will be the same and very different.

Right now the words Juvenile Dermatomyositis taste bitter and unnatural. The doctor confirmed she’s the youngest child he’s seen with JDM, as the average age of onset is 7 years old.  I know that God lets us taste the hard things in life to help us appreciate the good. As we learn about suffering, we learn more about love. There is no turning back from this road that we’re on, and so we will trust God through this journey. We will celebrate God’s goodness; we will taste His fullness as you feed us; His faithfulness as you pray for us and walk beside us;  we will grow to understand how wide and how deep, how long and how high His love is, as we love our daughter, knowing somehow He loves her even more.

John9:1to3

 

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Simply Love

 

simply love 

Love is complicated,

Tangling us in knots of fear and uncertaity,
Nervous knots of joy and anticipation,
Love changes answers, challenges reason.

It is small like a dimple, it is big like a swollen belly,
Bitter like coffee, salty like tears
Sweet as syrupy pancakes.

It afflicts the strong, it comforts the weak
It breaks us, it makes us whole,
Love empowers us, changes us, humbles us.

Love is at the edge of our fingers,
 Its the next right thing, the hardest choice.

Love is brave,
Love is simple,
Love is life.

 

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Learning to Fly

 

bird
This is what I know.
I know my heart aches to watch my daughter crumple to the ground, her legs too weak to skip, or twirl, or run till she can’t catch her breath.
I know a mother shouldn’t have to sing lullabies to calm her baby as she twists and wrestles to be free, tears pooling in the corners of her eyes as she’s poked again and again.
I know the mom in the crowded waiting room of the ER, with her head bowed over the sleeping pile of a sick child, belongs at home with her feet propped on a table, her son tucked in his Thomas Train comforter in his bed.
I know I’m not alone in suffering. I know we can only drink life in as bittersweet cocktail of overflowing joy and aching emptiness.

But I know so much more.

I know I am blessed more than my words can ever express.
I know a daddy that pushes his baby around the hospital floors for hours on end, who wears an ash cross on his forehead, his eyes filled with tears, but his heart full of unwavering loyalty and trust. A husband that stays all night on one half of a twin cot because he knows his wife needs him.
I know a doctor run ragged with slumped shoulders, walking home, used up and tired, who’s hands have healed more lives than faces he can remember,
I know the warm blanket of peace wrapped around me amid the chorus of children’s cries and the dull ache of fear and uncertainty.
I know more food than my belly can hold, more prayers whispered than I can imagine, more kindness than I can repay
I know that when we’re broken, the love that binds us back together, makes us more complicated, and more beautiful.
I know a little girl who can’t walk, but believes she can “fly” through the trees in a blue plastic swing.
I know a girl who will walk, and skip, and run again, with a life story that sings like a love song,
I know a God that gives me the eyes to see His grace tucked in this corner of a hospital room lulled to sleep by the hum of IV monitors and the snores of my little bird.

fly

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The Baptism of Lucy Love & Ruby Grace

 

baptism

Love was afraid,
but Grace led her by the hand,
and said, “Perfect Love casts out fear,”

Love humbly bowed her head as the water kissed her braided crown,
and Hope captured her heart.

It was time for Grace
She faltered, crying out in pain,
But as the water trickled in a song down her cheek, 
She felt the warm gift that Faith gave her,
And Amazing Grace hummed with Joy,

We smiled as Love and Grace stood before us like sisters,
Held up in trusting arms, carried by the Grace & Love of their Father,

Baptized at last!

 

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Just This Once

justthisonce

Just this once,

We’ll lie here nose to nose,
Until thoughts give way to dreams,
And your rhythmic purr hums like a lullaby.

Just this once,
We’ll ignore the light that peeps through the cracked curtain,
Our bodies curved in a sleepy smile,
As daytime waits for us to stretch and yawn.

Just this once,
We’ll trade our plans for thick batter and crackling eggs,
Your bare tiptoe feet pattering against the tiled floor like clumsy ballerinas,
As dirty dishes pile contentedly beside the growing stack of hot pancakes.

Just this once,
We’ll wear our messy hair and crumpled pajamas,
Dressed perfectly for the warm glow of dusk,

As day succumbs to night for another lazy slumber,
When long days pass quickly through tiny childlike fingers.

Just this once,
You’ll be this small,
So we’ll treasure these small moments,
before they slip away.

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A Prayer for the Lost & Found

momelyseprofile

We convince ourselves we have all the answers,
And then you remind us we don’t,
Control wrapped around our white knuckles,
As we tug an imaginary rope.
Help us relax our grip,

Help us to find your face in the dark formless places,
When we sit in the dark, on the hill of a question mark,
Eyes burning, head hurting, life blurring,
At the end of our rope we feel like we’re falling,
But then we’re found,
In You.

 

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It All Amounts to Love

Yawn

Ten Weeks,
Two Heartbeats,
My joy complete,

It all amounts to love.

Ten fingers, ten toes
Two Eyes, One Nose,
Two lips like a rose,

It all amounts to love.

Hungry cries,
Whispered lullabies,
Sleepless nights,

It all amounts to love.

Five loads of laundry, just today,
More to do’s than I can say,
Too tired at night to even pray,

It all amounts to love.

Smiles and tears,
Long days, short years,
Conquering fears,

It all amounts to love. 

 

 

 

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Love In The Details

feet

Mommy where was I when God made the world?
You were a promise in the stars.
Mommy where was I when you were a girl?
You were my imaginary friend.

Mommy where was I when you married daddy?
You were the blush in my cheeks and the dimple in daddy’s smile.
Mommy where was I before I was born?
You were the flutter in my tummy.

Mommy when I grow up where will I be?
You will be God’s answer to someone’s prayer.
The best friend with a box of tissues and good chocolate.
You will be the pink cheeked bride,
and the Mommy wrapping her hands around a growing belly.

Mommy where will you be?
A hand to hold; an ear to listen.
The point of your chin, the curve of your brow,
Bedtime stories, eskimo kisses,
“I love you mores”, And flowers dressed as dandelions.

Mommy we’ll always be together?
In all the ways that matter.

 

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Giving up on Success

free

Today I look around my house at the endless list of things I could do. In this sacred solitude, I feel a magnetic guilt that pulls my mind to the undone tasks. It takes a resolute decision to take a precious moment to fix myself a bialetti coffee, poured in my gold stamped, “blogging day” mug, and position my fingers to dance over my keyboard.

I wonder if it is the plan of the enemy to persuade us that doing things we enjoy is frivolous, rather than a necessary art. After all, what better way to render us useless than to keep us from dancing, relishing, and celebrating life? When our lives become about duties, tasks and responsibilities we become like the machines we create; designed to respond to programming rather than human emotion. But when we feel, react, and challenge, thats when we go from crowd pleasing to head turning.

Machines don’t start movements, write poetry, embrace for sheer pleasure, create out of enjoyment, stand still just to feel the wind on their face; and machines certainly don’t dance. Dancing is far too frivolous for the serious business of a machine.

I’ve been in a season of asking a lot of questions. Questions put us on uncertain ground, but yet, nothing is more certain than an answer. An answer is a challenged truth. A truth that has been tested, evaluated, and proven true.

Recently I keep asking myself why I do what I do? Why do I blog or write a book? Why do I read? Why do I lead Bible Study or moms group? Because, none of these things are within my realm of responsibility. They aren’t my job and they don’t fall under my duties as a wife, or mother, daughter, sister, or friend, so why do them? And once more, does my doing them really matter?

When people ask me “what do you do?” I feel like I’m supposed to only include the things I do to make money, but honestly, those aren’t really the things that make my fingers buzz with joy.

I think that in this age we have confused careers with callings.

I don’t make money writing about God. I aspire to become a Christian author, but if a wild haired man climbed out of a shiny metallic time machine from the future and told me, “You will never make a dime as a Christian writer,” I think I would keep it up anyway. Why? Because human hearts aren’t programmed to produce- God made us in His image to create.

When we define success by popularity, paychecks, and position, in order to live in bigger houses, to do more work, and please more people, we will always come up short, or at least, the satisfaction is fleeting.  

T.S. Eliot was quoted as saying about the radio, “it is a medium of entertainment which permits millions of people to listen to the same joke at the same time, and yet remain lonesome.”

Maybe success is the medium by which we all try to listen to the same joke. We all pretend to smile, and laugh, and get it, but deep down, we’re all aching for something more; never really feeling like we’re hearing the same joke as everyone else, or maybe everyone else just has a betters sense of humor.

Success tells me I haven’t arrived, but when I create, I’m there in that moment, living my calling. I think if each of us took a little more time making less money and enjoying what we’re really good at, doing that thing that makes our bellies feel warm and our feet tingle, well I think we would all feel more human, in a really good way.

The day that I write in order to achieve, more than to create, is the day I should stop. Because there is nothing I can achieve in this world that has more value than my Creator. And by His Spirit, I pray that these humble words I type don’t just achieve human success, but touch human hearts.

 

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