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.

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8 Comments on Infusion Day

  1. God has you such a place because through this your lives are a testimony to His grace & faithfulness. What plans He has for your family. You are stronger than you think. I love you sis.

  2. Thank you for sharing your story… I’m so sorry you’re going through this. I love what you said about “happy that is fought for.” I think it’s 100% okay to NOT be happy when we go through hard things, but I love that you saw in these families a stubbornness to find joy anyway. Beautifully written!

  3. Wow. I haven’t read your words befor but you are part of my glory writers group. Thank you so much for the illustration if the joy jars. That struck a chord as I try to hold onto joy in my own health battles. I pray the patience you will need for this journey. Thank you.

  4. Praying for complete healing and restoration for your little angel and all the other angels in that hospital. God bless you

  5. Today, I went to the beachfront with my children. I found a sea shell and gave it to my 4 year old daughter and said “You can hear the ocean if you put this to your ear.” She put the shell to her ear and screamed. There was a hermit crab inside and it pinched her ear. She never wants to go back! LoL I know this is completely off topic but I had to tell someone!|

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