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Florence's Story, part 2: What is joy when the world hiccups?

Posted by Michaela Evanow on 12 September 2014 | 6 Comments


A week ago we introduced to you Michaela Evanow, mother of two-year-old Florence who has type 1 spinal muscular atrophy. Her first post walked us through how their family found out about her diagnosis, and today’s story is about finding the light in the darkness; it is about the joy that she able to find and how she found the strength to get her family’s life back on course.

What is joy, when the world screams out?

Joy isn’t found in the aisles of a store while I stock up on gifts and sale items. It isn’t found in the wrinkled sheets of nap time, a lit candle, the warm cup of coffee under my palms. It isn’t a movie night and bag of popcorn, nor is it in Season 2 of Call the Midwife.

I have experienced such deep joy in the crook of brokenness. When I swoop Florence up into my arms, and nuzzle my nose into her neck, when I feel the heavy weight of her limp body, and see her chiclet teeth exposed in a smile, this is the spark of joy.

This is the spark, but not the flame.

I used to struggle with seeing joy, for I was blinded by grief and caught in the haze of black sorrow. I felt the weight of death, her diagnosis. She’s too young, my heart yelped, she’s too young to be wounded, too tender and innocent. And yet her babyhood was full, it was rich. Looking back, it was truly bliss. Once I shook off the yoke, I threw off the weight of her diagnosis too.

I threw it off, some said with a rush of naivety, but I felt that was right for me.

And then she was intubated and nearly died. She hasn’t taken anything by mouth since. Suddenly, the diagnosis reared it’s ugly head and corralled me into the way of fear.

She has lost the use of her arms, up to her elbow, she has never had strength from the waist down. Her strongest muscles remain in her wrists, her grasp, and her stomach.

I began to chant, “I’m not afraid of death, I’m not afraid of the sting.”

Her last admission to the hospital helped me realize that I have come a long way, only by God’s grace, for He freely douses me in it. I wasn’t nauseous, I could eat and function, I slept well. I fought off the suggestion that she may not recover.

We said with straight faces: if she doesn’t get better, we will not give her a tracheotomy, we will transfer to Canuck Place Children’s Hospice for end of life care. If she gets worse and you need to intubate, we agree, that is an option. If you extubate and she doesn’t do well, we may or may not intubate again.

We thanked the doctor, held hands tight over the green hospital blanket. We didn’t cry. We looked at each other, she will get better, we said.

We thrust her life, our sanity, our aching hearts into the Father’s capable hands and we waited.

She recovered, rather quickly. We went home with a daily puffer for her lungs, just another piece of plastic that helps her.

She is still my Florence, blooming away inside, ready to burst forth. She makes the snort of a pig when she sees snouts and pink curly tails. She laughs like the Count from Sesame Street, and “woof woofs” like a dog. She makes me so proud.

She makes me cheer so loud, I’m practically screaming, when she does pretty much anything at all.

smashes photography

What is joy, when the world hiccups and we are thrown off course?

Joy is not a feeling, a fleeting thought. Joy is steady and hums throughout the long days of drizzle and hospital stays.

Joy is,

realizing I only have two hands, and the weight of the world doesn’t fit.

Joy is,

letting go, weights dropping like lead.

Joy is,

recognizing the wounds I carry will change the world, if I let Him cake me in His balm, if I let Him heal.

Joy is making a home here, and if we fall, taking down as many strongholds as we can grasp.

Joy is,

the rush of holding onto hope, rope burns and all.

To read more about Michaela and Florence's journey, follow Michaela's blog:

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  • Joy is reading that there is hope beyond grief and darkness and that life and light are there for those who can see.

    I love the heart of you and your family, Michaela, and the hope enfolded there.

    Posted by Bev Murrill, 15/09/2014 12:41am (3 years ago)

  • This family and their story is truly an inspiration and I hope, a light, to other parents struggling through difficult challenges with their children.

    Posted by Sarah Fairbrass, 14/09/2014 8:40pm (3 years ago)

  • It never ceases to amaze me the power of your words, Michaela. Joy, each way you describe it is raw, real and a challenge to go deeper into Jesus love.

    Posted by Bev. Nash, 14/09/2014 8:17pm (3 years ago)

  • You're a blessing, that's for certain. Thank you!

    Posted by Maripat Rawson, 14/09/2014 8:10pm (3 years ago)

  • I love your joy, may you always find comfort in it.

    Posted by Cheryl, 13/09/2014 10:58am (3 years ago)

  • Do you ever wonder how we are chosen as parents for such special children? Your warmth and enthusiasm, dedication and wonderment for your beautiful girl are what she needs and thrives on. And you, in turn, learn about life from your child.

    Posted by Heather Blaze, 11/09/2014 6:10am (3 years ago)

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