Walking on Water: Florence's story
Michaela Evanow is the proud mother of the sparkling-eyed, two-year-old Florence.
When Florence was three-and-a-half months old, Michaela began to notice that her little girl was having trouble lifting her head. After some genetics tests, doctors diagnosed Florence with type 1 spinal muscular atrophy, a disease that is incurable and affects normal motor development such as rolling over, sitting and crawling.
The disease comes with a heart-wrenching prognosis – few survive past two years old. To help her cope with everything she and her daughter are going through, Michaela turned to her creative outlet - writing. Below is a beautiful post Michaela wrote, about the time she found out about Florence’s diagnosis.
I was digging up potatoes from the garden, dirt under my nails, sweating under the summer sun. Florence, my baby, was napping, and I was enjoying the glory of my garden. It was planted a couple of weeks after her birth, somehow, with aching pelvic bones and swollen feet. It had the most abundant harvest that year. Between my bouts of grief and anger, there were so many beets to bake, greens to freeze.
It was June or July. I can’t remember when, and I didn’t write it down. It was nothing to celebrate, not a date I wanted to remember. But certain things, bold and sharp-edged things, remain.
Like the feeling I got when the doctor started talking to me over the phone. I heard the sadness in her voice, the dip and the sighs. I begged her to tell me over the phone. I didn’t even think about it, I only whispered, “Tell me.”
Before she said a word, I began to weep in anticipation, and the bone and spirit crushing began immediately. I was leaning over the sink, one hand braced against the the subway tiles, the other crooked in the sink against the stainless steel. A few lone potatoes bobbed in the water. I unplugged the sink and let it drain. I threw those potatoes out a few days later.
The doctor seemed to stutter, knowing she probably shouldn’t tell me over the phone. She broke protocol–afraid, I think, of having to deliver these words in person:
“The blood tests revealed that she has Spinal Muscular Atrophy type 1.”
She was just three and a half months old at the time, a wee baby, living off my milk, rocked in our arms. She was dependent on us for everything.
I replied, “No, no, this cannot be happening. Are you sure?”
“Well, unfortunately the blood tests don’t lie. I’m sorry.”
And then the storybook shock came, the cotton ball mouth. Why did I ever take her to the doctor? I am not this person. I can fix this this. I can pretend this didn’t happen.
Oh, but as I sat there on the living room floor, praying my wails wouldn’t wake her, I realized this: I cannot fix it.
I didn’t even cry out to God. I was gone, at that moment. I was swallowed whole.
I am the one that has to bear this burden, and carry it to my family, to my husband, to my world. I have to lay it at their feet, the mess of it, so tragic. I am the grieving mother, though I haven’t lost a child. I won’t tell people for a long while, and so I won’t have the support of my community in those first few weeks. It will hover in our home, hushed, secretive, too painful to put into words.
I will weep for weeks, for months. I will cry through our first date after diagnosis, cry during funny movies, silent tears that have no end. An endless drip of sorrow, nearly saltless, for they come so quickly. When I look at her beautiful face, when I give her my milk, I will cry without trying.
Thank you to Michaela for allowing us to republish her incredible story, originally written on her blog: http://michaelaevanow.com/
As Michaela says, "Flo is so much more than her diagnosis. She is a miracle." Stay tuned for next week’s post by Michaela about the progress little Florence has made.