Walking On Water

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2013appleblossomfamilies077I 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.

Images courtesy of Michaela Evanow.

 

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Michaela Evanow
I’m a wife and semi-crunchy mama of a girl and boy. After doulaing in Vancouver, I became a medical mama when my daughter, Florence Marigold, was diagnosed with Spinal Muscular Atrophy—a muscle wasting disease. I have a nomadic heart, though I haven't left our home in years. I adore Eastern Europe, India, thrifting, coffee with cream + honey and global maternal healthcare. I write about the messy, salty glory of mothering a terminally ill child and finding the goodness of God in grief at MichaelaEvanow.com
Michaela Evanow
Michaela Evanow

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Comments

  1. Yes. He continues to say “Stay here. Hold on. Trust me.” and that all, is indeed, for purpose . . . for His glory we will see.

  2. I am always encouraged by your journey. Glad to see you being published in this space (so more people can read your writing).

  3. For a thousand “your baby is an angel in heaven” and “she was too special for earth” and “she’s been called home” cliches, there are mama-hearts shattering into a million pieces, knowing that these well-intended ‘answers’ don’t heal (or even sooth) a broken heart. Life gives us way more than we can handle – of course it does – and it’s in that broken place of sorrow and lament and anger and hopelessness where we experience the grace of Jesus in impossible measure. The nearness of Him to the broken-hearted is something I’m both pained and grateful to know, too. And it’s from there that hope rises – out of the ashes, out of the dark, even out of the fear. Your gorgeous Flo is so blessed to have parents who never stop loving, never stop believing, never stop fighting and resting, hoping and surrendering. She is exactly where she’s meant to be – with you, covered and so, so loved – as you take refuge under the shadow of His wings. Praying for your heart today, dear one. xx

  4. Carol Omahen says:

    I’m sorry that you misinterpreted my comment. I am not saying that God wants her to go home to Him. He can heal her completely, and this is what we will all be praying for.

  5. I’m Chinese and we are not typically the hugg-y type, but your words make me want to reach out and give you one giant virtual bear hug – and a kiss for your little one. Thanks for sharing your story.

  6. Saskia Wishart says:

    Michaela, I have been meaning to comment, but feel like anything I have to say is inadequate. So thank-you, thank-you for bravely sharing. Thank-you for putting words to your journey, and thank-you for sharing this from your 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.”
    There is profound beauty in that line.

    • hi Saskia, saying anything at all is good for me! I’m still just a mama, praying through this life. Thanks for writing. At first I rejected her wisdom, since it was easier to wallow, and I was stuck in a place of empty. But those words seriously carried me through.

  7. I love your strong spirit in the Lord. It’s amazing that Jesus calls those who believe without seeing blessed. We may not see Florence’s physical strength, but we believe nothing is impossible for God to restore! Stay strong sister xoxo

  8. Yes, sister, claim our grief! Lament! Thank you for helping us work through our numbness and into open hearts. Also…I love your bio. Birth junkie! YES.

  9. pastordt says:

    Thank you so much for these rich words of lament and praise – for that’s what you’ve done here, isn’t it? You have a wise mother – the grief must wash over you. It just must. But you are not alone in the washing, Michaela. Many blessings as you continue to walk this hard road. Your baby girl is beautiful. And so are you.

  10. Carol Omahen says:

    She is perfect just the way God made her.

    • Hi Carol, She is my perfect dream, that’s for sure, but sickness and disease aren’t from God, so I have to gently disagree. I know He wants her to live and thrive, not suffer and be restricted by this life threatening condition. This is so often the challenge I face: God is in charge, but He isn’t making this brokenness. Thanks for writing.

      • pastordt says:

        I am with you on this one, Micheala. Haven’t a clue what all the answers are to this mystery, I just know that God does not ‘will’ this brokenness. But God promises to walk with us through it. And for now, that is enough.

      • Carol Omahen says:

        I know that God doesn’t want us to suffer, but there is much evil in this world. God gave you Flo to take care of until He brings her home. We are only taking care of our children temporarily, they are not ours they are God’s. We can pray for a complete healing, but He could answer, yes, no or wait. We can only pray for His will to be done. I will be praying for Flo and we will have to see how God answers our prayers. There is a reason for all of this and something good will come out of this. May God bless all of you as you go through this journey.

        • Hi again Carol, thanks for writing back 🙂 Like I was saying in my article, for me, I don’t believe God is waiting to “call her home”. A young death is certainly not in His plans. I think it’s an injustice. I don’t think He answers “no” to healing either. I think there is something missing…and I don’t know where or what, but not once did Jesus turn away any sick or suffering people in the Bible. Does that make sense? I’m asking lots of questions on this journey, but I have learned the greatest peace is knowing that God always wants us well, His plans are always for good, and His will is never to bring death. And I’m sure you know that. Bless you.

  11. Sherri Adams says:

    Michaela I knew you when you were a wee baby and now you are a reflection of God’s strength and ensuring love. Your parents have taught you much and you have clearly embraced the message of God’s grace amidst adversity. I was blessed with 3 beautiful daughters, 2 of whom suffered significant special needs. Our youngest passed away at 13 after a courageous battle against Childhood Disintegrative Disorder. She taught us so much about living life passionately; forgiving injustice and loving unconditionally. She is forever I’m our hearts. Our middle daughter lives with multiple disabilities including DD, schizophrenia, epilepsy and more yet she is so courageous, determined and generously loving. Our eldest learned to reach out to those in need through all this. I’m now a case manager for adults with disabilities and care for these individuals as I would my own children. You will come to see over time that the pain you endure and overcome will strengthen you in ways you cannot fully comprehend. One day you will look back and realize it has all worked together for good. I now stand in that place. I realize God has blessed me with beauty for ashes and used me to love those whom many would turn their backs on. I am so grateful for all life has allowed me to experience for I am stronger, more understanding and knew capable of unconditional love. Keep sharing your inspiring message and know that great things are I’m store. I offer up heartfelt prayers for your precious daughter, yourself and your beautiful family. <3

  12. This is so beautiful Michaela. Such strength in these words. Blessings to you. Thank you for sharing these powerful, powerful words

  13. Sarah Richardson says:

    I already told you how powerful your story is, but whew, again I am left in awe. Thank you for sharing your heart with us, Michaela.

  14. Michaela, you are a hero in my books. Not only are you walking on water as a Mama, but you are also a fantastic writer. Whew. So powerful. Thank you for sharing some of your story here … I feel deeply honoured that you trust us with it.

    • Idelette, there is so much love and generosity here. You have created a place of holy beauty. Just know your words are always laced with such love. I couldn’t help but feel safe. xo

  15. He is holding all of you. I can hear the witness of his everlasting arms in your story. Thank you for letting us grieve with you. It is so much easier than doing it alone. Mary and Martha had many with them as they were grieving for their brother.

  16. Sabrina Ormsby says:

    What a beautiful little one.

  17. jodylouise says:

    Beautiful. Thanks for sharing.

  18. Sharyn Sowell says:

    I know Him, though through a glass, dimly. I am further down the road than you are but I have tested Him and know it to be true. I have lost children. I have borne scary news, too, and in fact now I am the one with the time bomb ticking in me.

    Isn’t this faith an upside-down thing? You lose your life to gain it, give away to be rich, and learn that His power is perfected in our weakness.

    Keep on the pilgrimage. He will hold you closest when your heart is breaking and teach you things that will take your breath away. And then, someday, the great reunion and we’ll understand. For now it is enough to trust. No matter what.

    I loved your essay. Loved it. You speak the truth, sister.

    • Hello dear one,
      Thank you for sharing with me. I don’t understand why you had to lose and grieve and now have to face another battle. But I see the truth, brimming in your words. The hope of heaven, this always fills my heart with a generous amount of peace. Praying that heaven comes to earth, that your life and your story changes mindsets and lives.
      xo

  19. Pilgrimage comes in many forms. i am so sorry for where yours is right now. Powerful words, powerful hope, powerful…but at such pain. Blessings to you, your husband and you girl child.

    Anj

    • As much as I struggle with my pilgrimage sometimes, I love the One that walks before me. I love that we can declare life and hope and healing and know that our prayers never return void. Thanks for writing Anj.

  20. Harmony Strong Vuycankiat says:

    Wow. My prayers are with you. I believe, just like you, that God is good, and doesn’t bring death and destruction into our lives. Jesus died so we could be free. I will set my faith upon God’s healng power to work a miracle in your life.

    http://hisbeautifulwarriors.blogstpot.com

  21. Bev Murrill says:

    It’s hard to say how deeply I feel what you have written. Emmanuel. I praise God for your heart to hold onto Him who holds onto you as you go through this. Your mum is right… let is wash over you. You will not drown.

Trackbacks

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