Category: Juvenile Dermatomyositis

Create Your Own Sunshine

 

 
 
SHADOW GIRL
One day the sun will kiss your face
One day your body will not ache,
A day you won’t need to run away,
Yes, there will be a day.
A day you stand in the light,
A day you will chase the sun,
A day when all will be made right,
A day we’ll stand in the light of the son.

I met my close mom friend for coffee. My two-year-old daughter was in tow, and her eighteen-month-old son was her debonair date. We rioted the local hipster coffee shop, our toddlers climbing on the benches and shouting, as we collected skeptical glances from the Chapman University students with their laptops, sipping macchiatos and balancing oversized spectacles on their baby faces. The entire cafe let out an exhale as we got our coffee to-go, herding our rambunctious kids outside along with our oversized strollers. It was a cloudy morning, which meant I could actually enjoy a casual stroll outside—like a normal mom and her normal little girl.

My daughter has a condition that means she cannot be in direct sunlight. Even with the cover of clouds, we have to protect her from too much UV exposure. We use hats, UV clothes, sunscreen, and parasols, but when she is having a flare up—even all of those precautions don’t always prevent her from getting a painful rash on her face, elbows, hands, and knees.

But this Fall day, we felt normal, walking beneath the protection of clouds, we felt free from the burden of hiding. My friend and I talked freely. The kids chased each other. Smiles were contagious and laughter came easily.

A couple hours later the sun peaked out, reminding us our precious morning was ending. I put my daughter in her car seat, and decided to drive around the down town area so that she’d fall asleep. As I began our drive, my daughter complained that her fingers were hurting. Our morning outside was having its effect. As my daughter quieted down and gently gave in to sleep, I let my mind wander to the sad thoughts I usually avoid. My daughter would never feel the warmth of the sun on her face, without it hurting her. The realization stung more than usual. Tears blurred my vision, and I blinked to let them roll boldly down my cheeks.

I paused my car at a stop sign, and looked up to see a white church sign with big block letters. “CREATE YOUR OWN SUNSHINE,” it read. The intersection was empty, so I grabbed my phone and snapped a picture. I knew it was a photo I would treasure, a story I would tell my daughter about one day.

In life we will all face limitations. Whether its the form of disabilities or disease, mental illness, grief, or the eventual effects of age—life eventually presents struggle—seen and unseen, that influence our every day lives. Sometimes we are born with our limitations, sometimes they show up and surprise us one day in a diagnosis. Whether its something we’ve lived with for a lifetime, or a new normal, there will be days when the loss will surprise us with a sharp new pain. As we live day by day, hour by hour, our limitations present themselves in new challenges that we don’t always anticipate. Sometimes its the same old challenges that suddenly wear a hole in our hearts like the toe of an old sock.

Our greatest fears and vulnerability loom beneath the surface of our imagination like a monster under the bed, making us want to run and hide—or hang our head in shame.

But when we face the limitations forced on us by a world we can’t control, we can stop, and look up and see the challenge of each new day: “CREATE YOUR OWN SUNSHINE.”

Pain and suffering leave gaping holes in our hearts and lives. Our limitations will taunt, accuse, and challenge us to believe that we aren’t whole. But maybe those holes can be the place where God plants the seeds of sunshine.

The sun rises each new day. The son rose after three days of darkness. When this life weighs down on us with its demands and limitations, when we feel like we have to hide in the shadows, or feel too weary to get out of bed, we can look up and see the Son.

The Son takes our weakness and shame and makes us whole—the Son shines hope into this dark world. We hold out His grace in our tired hands, like the shining sun that lights us up, from the inside out; and in his hope and promises, we can “CREATE OUR OWN SUNSHINE.” A little light that promises hope in hurt, a grace shaped love that keeps our hearts beating for more.

 

 

Infusion Day

I’m sitting here with a faint smile across my lips. My daughter is laying across my lap, her hand cupping the perfect point of her chin. We’re resting and waiting as the medicine drip, drip, drips into her veins.

Once a month we come to the hospital’s infusion center for her to get a steroid drip and IVIG blood infusion.

We get up with sleep still in our eyes and quickly fill our bellies. We load into the car in our comfy clothes and bags of books and blankets and stickers, to camp out at the hospital. The day starts early and wraps around dinnertime, sometimes later.

The day after, she’s lethargic and cranky, suffering a hangover from the infusion that her body so desperately needs.

I dread these long days of being tied to an IV pole, but a part of me craves the comfort of them. The comfort that comes in knowing that these are days of healing.

God speaks to me more loudly as I sit in the hospital and watch the smiling children with their sunken eyes and patchy hair. We’re lucky here, because Elyse gets an IV in her arm instead of needing a port in her chest like most of the kids.

A doctor from Elyse’s hospital stay came in to do her check up. Tears collected in the bottoms of her eyes as she took in how much she’d grown—How Elyse’s once angry red skin now looks smooth and creamy.

Today a nurse gave us a Joy Jar. A jar with a rubber ducky, and a soft square blanket, a light up ball, and thick, bright crayons. A tall, clown-like man came in with polka dot tennis shoes and oversized glasses. He bent down over his long slender legs and played a ukalele, singing a slow folk song.

This isn’t like an amusement park where children come for their fill of happiness. But this jar of joy, and this awkwardly sweet clown are brave and beautiful reminders that this place is full of life and hope. As the kids hum along to a melancholy tune, wearing hats embroidered with the letters NEGU (never ever give up), I see happy that is fought for—like striking a match in a dark and unfamiliar room.

I want to sit and listen to every family’s story. Stories like the three sisters that come along every two days to hold their baby sister’s hand during chemo; or the grandma that brings her three year old, Eva, once a week. Her sparse short hair is always decorated with a large pink bow. I want to light a candle for each of them like a birthday cake. I want to hold onto their wishes and blow them like dandelions.

As I sit now and see the brave stories unfold, I long to be the kind of person that sings their sad songs with them, and offers jars full of joy. They teach me that joy is fought for, and hope is holding the candle of faith during a long, hard wait.