How to Be Content

BE

“Dove,” she crooned in her sweet baby voice.

“What? Dove? No, what did you say?”

“Dove, dove, dove,” she insisted, pointing at the mantel above the fireplace.

I thought my 18 month old daughter was pointing to the small wooden bird standing there beside the carved books, shaped in the letters “B,” and “E,” for each of my daughters. But, was it possible? I don’t remember even showing her a picture of a dove, and for goodness sake, wouldn’t she just say bird?

She was getting frustrated now, gesturing wildly, and saying the word again and again, gaining more and more confidence, “Dove, mommy. Mommy! Dove!” 

I stood and picked her up, carting over to the direction her chubby finger pointed. I left some distance from the bird, to see if she chose it herself. She lunged with open hands toward it, and so I plucked it from the shelf and handed it to her. She cradled it and gazed at it lovingly “:Dove.”

I could have missed it. This gorgeous moment with my daughter as she dazzled me with who God is creating her to be. If I had n’t stretched out our night routine to read the girls poems, if I hadn’t paused and smelled my three year olds hair as I kissed her forehead and patted her comforter around the shape of her body, I could have hushed my baby’s persistent babbles, or swept her up to rush her to bed. For some reason, tonight, I lingered, and witnessed a fragile miracle.

Earlier as I sprayed and wiped my counters as my girls busied themselves with preparing a meal in their play kitchen, I prayed out loud, “God show me where you want me to be. There are so many things I love and long to do, but I want to be present with what you’re asking me to do right now. If its being the best mother and wife I can be, then help me to find joy and fulfillment in that.”

You see friends, I’ve been falling into the trap of gazing at other people’s grass. I want to do something impactful with my life. You know, something with a flash and a bang. Lately I’ve been thinking if I didn’t have the responsibilities before me, then I would have time to do something, more significant. Cringe. It sounds worse on a page before me, but sometimes I need to face my ugly truths to be delivered from them.

We all long for significance. To be known. And often in our culture of mega blogs, self publishing, YouTube, Facebook, and Instagram, we think the way to prove our worth is to be known by a thousand of our closest friends. We have platforms, and events, we want more likes, and shares, and followers. Church ministries count the number of heads to measure impact. We want to be fabulous, popular, right, knowledgable, and valued instead of simple, humble, open, seeking, and small. But when we look to be known in the way our world packages it, we can miss being known by the person right in front of us.

Life on life, hand in hand, sip by sip, we find that the heart of what we really crave is in the sweet moments wrapped in friendship, and motherhood, lost in moments we rush by looking for the next best thing.

This afternoon I met a friend for coffee and told her secrets. We watched our kids dig in the dirt and plant imaginary seeds.

I came home and danced with my girls. Watching Elyse learn to move again is a tiny wonder. Bree copied my goofy dance moves and helped me make waffles for dinner. 

And each moment was significant. It was beautiful, and small, real, and meaningful.

I long to be known, but then, time and time again I hear the dull thump of a hollow dream as God reminds me that nothing else but Him will fill me. 

The dove is in the story of Noah’s ark. It returns to Noah with an olive branch to show him that there is dry land. The dove represents peace to show God’s reconciliation with man after the flood. The dove is also the form the Holy Spirit takes over Jesus during his baptism in the Jordan. A dove could be another bird, but in the Christian faith, it isn’t. Its because of faith, that we see something more- we believe in more.

Elyse could have seen a bird but she didn’t. In a simple wooden bird, she saw a dove. I could chalk this up to a weird coincidence, but I don’t. I see my baby girl reminding me that I am already known, and I see God using a simple moment, to remind me that He is in our midst- among clumsy ballerinas, golden brown waffles, and a carved blue and red dove- perched beside the word “BE.”

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Chasing the Sun

ales-krivec-14570-2
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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Boat-full of Blessings


happy

Two weeks. Two weeks separate me from my previous reality, before we received Elyse’s JDM diagnosis. Time tricks us. How quickly it passes without our noticing. Days and years wash by in a peaceful stream of happy memories. Then a mere minute can mark a before and after that leaves us forever changed.

But I don’t want to go back to the before. I want my daughter healthy, yes, but I realize now that her health isn’t something I can hoard and protect. In this moment she is walking, and smiling, and that is enough. I am challenged to stand in the present circumstances, tangled and untidy, amid hills of question marks, and find a hope that doesn’t flicker with my uncertainty .

We just watched the movie Trolls, which was a beautiful distraction for us as we ate homemade lasagna (thank you Lyndsey!) and sweet strawberries (hooray its time!). Elyse even said “beautiful,” for the first time as she pointed at the multicolored screen. It sounded more like “boat-full,” but we speak her secret language, and got the gist, so it totally counts.

Trolls are the hallmark for happy in the movie. Apparently they have happy all figured out, and it involves hugging, singing, dancing, and accomplishing astonishing feats with their magical hair. As I tried to zone out and into this psychedelic story, I couldn’t help my smugness. I think the disillusioned troll, Branch, who has lost his bright colors from years of grief and fear, knows more about happy than they give him credit for. When he emerges on the other side of his despair, his happy is hard earned, and deeper than a passing emotion.

Joy isn’t happy like the bright buzzing trolls that can flicker like neon lights. Joy is a hard won strength and persistence fought for through the muck of every day life.

Social media seems to know happy well, delivering snapshots of the bright spots of our friends’ lives. Good beautiful things we should celebrate, but not the kind of substance to be chewed up and swallowed as our soul food for sustained strength. Our screens and TVs fill our hungry hearts with happy in the form of Dippin’ Dots that melt into a colorful puddle of nothing.

If we stake happy in the sand of our present circumstances, we may end up sorely disappointed as the waves shift our immoveable reality, and erode our security.

I love rocks. We save rocks and paint them. There’s a pile outside my front door. I can’t keep keep plants alive- really ask my husband its hopeless- but I have kept pet rocks since I was little. My sister would paint faces on them and I would be entertained for hours. 

As the Israelites crossed the Jordan, God commanded the leaders of the twelve tribes to pick up a stone, and put it on the other side, to remind them what He did for them. I imagine they were much bigger than my collection of river rocks. Maybe the tribes’ leaders competed on who could carry the biggest rock, as they heaved boulders on their backs to show their might. But the twelve large stones that stood on the other side of the Jordan weren’t there to prove how strong the men that carried them were, but an immoveable testament to God’s might: His provision for the people of Israel- not something that could shift with whatever doubts pervaded their present reality.

This morning as I called my insurance company, I hung up feeling frustrated and defeated. God provides for our every need, but its so easy to trip over the rocks in my path instead of pausing and picking them up. I was letting my pleasant mood get washed away like grains of sand. But then a verse popped up on my phone from a friend:

“Listen to me, you who pursue righteousness, you who seek the Lord: look to the rock from which you were hewn, and to the quarry from which you were dug.” Isaiah 51:1

The Israelites couldn’t go back to the other side of the Jordan. They couldn’t return to Egypt. Two weeks stand between a before and after in our lives. But with 14 difficult days also stands a cairn of stones to mark God’s faithfulness throughout every step of our journey. The messages, letters, and cards, along with Bible verses, pictures, and journal entries are tucked with other keepsakes to remember how richly and  intimately God provides for us. Papers and ink that will lose vibrancy over time, but point to the One who will sustain us in every difficulty.

The paths we walk will sometimes leave us breathless, but as we’re sucking in air, we might take a look around and begin to see things differently. We pause in the riverbeds to pick up the stones and remember what God is doing in our midst; all that He has done for us. And with our hands wrapped around His blessings, we stop grasping at illusive grains of sand to fill us up.

Whether my present reality is lack of sleep, or homemade lasagna and Trolls, I can count my blessings like river rocks. River rocks that fill my heart and keep it solidly planted in His promises and not my shifting reality. Meaning no matter how many before and afters my journey uncovers, I can find joy, and dust it off with my doubts and despair, and wear it around my neck like a cross.

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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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