walking on water: a story of grief, our diagnosis and faith.

September 6, 2014, Michaela Evanow, 5 Comments

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.

The grief will try to drown me and the enemy known as fear will torment me throughout the night. I will go through the stages: the shock and disbelief, the anger. I will wake up at night, with my heart racing and feel my mind throbbing: she has Spinal Muscular Atrophy! She has Spinal Muscular Atrophy? These words, these letters will clunk around in my thoughts, darkening any moments of joy. They will wake me up with a roar, metallic on my tongue, blood and rust mingling in the months that should be full of the newborn bliss of sweet milk and milestones.

Those milestones. I should never have mentioned them.

I didn’t know how terrible Spinal Muscular Atrophy was. She was just my baby girl, who couldn’t bear weight on her legs, and couldn’t do tummy time. I didn’t think about feeding tubes, intubation, breathing support, respiratory failure. I didn’t understand how my first born, my girl child could be, as the doctors would say, stricken with a terminal disease.

But now I do.

I now know the details that I mercifully chose to ignore for the first 10 months of her life: SMA is a thief, robbing your child of their muscles. All their muscles. When you have a sip of water, go to the washroom, smile, laugh, eat, wave hello, clap your hands, walk, swallow your saliva, breathe, talk, play, when you do almost anything at all, except use your mind, you need muscles. And SMA takes these muscles away, bit by bit.

Before the diagnosis I said I couldn’t do it.

If she had SMA, well I would die. We would divorce. It would be impossible.

I spoke death, because I didn’t know better. I was afraid of the journey ahead, felt that God had abandoned me. I was modelling what I saw in Western society at large.

This is how we grieve: we do it alone, we do it in darkness, and we pretend it’s not happening. It becomes a deep, dark pit, and people become awkward with all the gnashing of teeth. No one told me how to swim through it, except my mother. She told me grief is like the ocean, ravaging and wild. You must let it wash over you, and not through you, or it will empty you.

Grief needs to be felt, but I couldn’t let it destroy me. For I had to hold the one that was the source of this heartbreak, hold her to my breast and fight for her.

The world tells me I will lose my baby child. This kind of grief is thick and hard to wade through. I have let it consume me at times. It lured me into it’s grip, so that when I finally started laughing again, when I tasted joy, I was tempted into remorse.

Grief has a tagline. We hear it in movies, I’ve read them in countless memoirs: “God took her from us, He called her home.”

When I hear this, I recoil in disbelief. God doesn’t take away our children, like a murderer. And God doesn’t need any more angels in heaven! Saying this does not make me feel better, it does not reconcile the pain of this world with the glory of heaven.

spwatermark-4300-001Then there’s Job. Job 1:21 says “Naked (without possessions) came I [into this world] from my mother’s womb, and naked (without possessions) shall I depart. The Lord gave and the Lord has taken away; blessed (praised and magnified in worship) be the name of the Lord!” {AMP}.

Job is the question. But isn’t Jesus the answer?

Why do we whisper “The Lord giveth and the Lord taketh away” at the foot of a coffin, while we stand beside mounded wet earth, gaping wide to receive the body? This is death, and Jesus came to destroy death, didn’t He?

Isn’t Job speaking about things–possessions, homes and jobs? And even if Job is speaking about children, and early deaths and injustice, how can we make sense of that?

The questions are endless, but I can’t let them define me anymore. Jesus is merciful, God is good, the Holy Spirit is my comforter. This I know full well, more than ever before. Instead of focusing on what is being taken away from my daughter, from my family, I have to focus on Him, or it will be a road of slow grief, of slow death.

What if this is my walking on water moment? I’m in a raging and endless storm and some days I can nearly touch the froth of those mighty waves. The salt of my wound dries white on my skin, starts to burn and flake. Fear tempts me deeper into the vessel. I’d rather hide in the bow than attempt to step off the boat and meet Jesus.

Would I rather hide and let the flood waters in?

No. This is not who I am. This is my walking on water moment. In all my brokenness, I’m learning to keep my eyes on Him–not the waves, not the darkness. I tell my spirit, “He will not let the wide, open sea swallow me, I will not be consumed.” And in this moment, if I keep my eyes on Jesus, suddenly I hear my voice clear, and the song on my salt cracked lips begins to come, in waves, with rhythm.

spwatermark-4350Strength, the very thing my daughter lacks, comes through these words, through the ribbon marked pages of my Bible. The ink cries out: I can do all things through Christ Jesus: the lowly and sorrowful things, the feasting and song singing, the holy and broken things—all things. 

I was made to walk on this water. Sisters, we were all made to walk on these waters, to tell these stories. We were formed from the dust and bone, to usher in redemption where there is death, to speak healing when there is hopelessness, to bless the name of the One, on these roads marked with suffering.

This post was originally published on She Loves Magazine.

5 Comments

  • Reply the water birth of Florence Marigold – Michaela Evanow March 30, 2017 at 9:23 AM

    […] Walking on Water: a story of grief, a diagnosis and faith. […]

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  • Reply Melissa Naiad November 6, 2013 at 12:21 PM

    This is such an amazing story. It’s so inspiring to see how far you’ve come and what you’ve learned. You’re such a beautiful writer.

    • Reply Michaela. November 6, 2013 at 1:32 PM

      Melissa, thank you. You’ve been along for the ride now, for quite some time. Thanks for being here 🙂

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