when the bump in the road turns into a mountain: motherhood and fear.

July 23, 2012, Michaela Evanow, 30 Comments

I can’t start from the beginning because the beginning is still too painful. I will back track soon, when the wounds are scabbed over and bring healing to those hurts with words & thoughts.

But in the meantime, I’ll start here:

I never thought I’d be that mother.

The one that tastes grief, so metallic and bitter.

I never thought I’d have to do this, run this race with my chin held high, leaning completely on my God.

There’s nothing for me to carry, because I can’t.

They say there is no “cure”. There are just missing genes.

Everyone wants a positive report, except on blood work. You always want it to be negative. Nothing returning back to you. No bad news.

I was in the garden, weeding, pulling out some summer bounty from the rich earth. I came indoors, started rinsing the kale, cutting off beet greens.

My phone rang and I answered it, oblivious to what was coming.

All it took was a few words, “I’d like for you and your husband to come into my office so we can go over the results of Florence’s blood work.”

“No. NO. Oh God, no, no, no, Oh God, please God, please don’t tell me. I need to know right now. What WHAT is it?”

“Do you want me to tell you over the phone?”

“Yes, oh God, I can’t bear to wait all day I’ll go crazy. Please oh please oh God…”

“I’m really very sorry to tell you this, but….”

And I’ll stop there, because I refuse to mention the name, the diagnosis. I refuse to call it out yet, to cast shadows over my daughter’s future, to label her.

The doctors believe that something is wrong with her muscles. Something very wrong. Something that can’t be fixed. They say there is hope because every child responds differently, ever case is different. I cling to these things. She is in the “very strong” category and so no one is worried yet. She is behind on some of her motor skills, but that is it. I praise God that she is doing so well. I still don’t understand much about it, and I feel at peace in that place. There is no need for me to research right now. Perhaps one day I will, but right now, it’s just me and Jesus and Florence and Jay, walking through this struggle.

Know that my heart is being held in the secret place, it’s being covered by the Father’s wings. I rest under the shadow of the Almighty. There is a supernatural grace that washes over those who experience grief and mind numbing fear.

Because there is nothing to be done (yet), I have nothing but faith. No amount of striving can fix anything. But Jesus can, my Lord, my Saviour, the One who knit Florence together in my womb makes no mistakes. I lean not on my own understanding, but in all things trust in Him.

Friends, I don’t know what the journey looks like, but I ask that you treat Florence like any other precious little lamb. She is thriving and healthy, and she will continue to run past the limitations, to shock the doctors, to grow and get strong. And Jay and I? We just need love and support and true friends who will walk through this journey with us. We don’t need pity or well meaning wishes. We need strong, determined friends who believe what we believe.

This is not the end of the story, it is merely the beginning.

My God is good and full of love, and because of his characteristics, I believe in miracles.

Will you believe with us?

30 Comments

  • Reply Janice March 11, 2013 at 10:14 PM

    I just started reading your blog and it’s like reading my mind, my son was diganosed with NF1 when he was 10 months old ……hearing the things you say r my thoughts exactly. We have to be brave and strong and fight for our littles. it’s harder some ays than others, and I too am hopeful that he is one of the few with little or even better no complications. I will and your little Flo to my nightly prayer with my boy. God bless your family.

    • Reply Michaela. March 12, 2013 at 10:18 AM

      Thank you Janice. You are a hero!

  • Reply give thanks with a grateful heart. « October 5, 2012 at 5:18 PM

    […] have joy within my heart these days. In the first days of the nightmare, I would see Florence smiling and I would lose control. I would rage and scream and wail. Her […]

  • Reply Janis Keller July 27, 2012 at 9:05 AM

    A Blessing for your family.

    BEANNACHT – John O’Donahue

    On the day when the weight deadens on your shoulders and you stumble,
    May the clay dance to balance you.

    And when your eyes freeze behind the grey window and the ghost of loss gets into you,
    may a flock of colours, indigo, red, green and azure blue
    come to awaken in you a meadow of delight.

    When the canvas frays in the currach of thought
    and a stain of ocean blackens beneath you,
    may there come across the waters,
    a path of yellow moonlight to bring you safely home.

    May the nourishment of the earth be yours
    may the clarity of light be yours
    may the fluency of the ocean be yours,
    may the protection of the ancestors be yours.

    And so may a slow wind work these words
    of love around you,
    an invisible cloak to mind your life

    Love AJ and Nornon

    • Reply Michaela. July 27, 2012 at 11:14 AM

      That’s so beautiful Aunt Jan, thank you.

  • Reply Jim Belfie July 26, 2012 at 1:25 PM

    Isaiah 54:17 No weapon forged against you will stand and you will refute every tongue that accuses you. This is the heritage of the servants of the Lord, and this is their vindication from me, declares the Lord.

  • Reply Chelsea Henkel July 24, 2012 at 11:16 PM

    Yes. I believe. I wholeheartedly believe. I have seen miracles with my own eyes. I believe in a God who sees, who cares, who knows our deepest pain and has offered to bear it all. He is a good God, and he loves us so much. He grieves with us, he takes our suffering upon himself, and weeps with us. He is a God who knows all and IS all. Who has the Power to heal. I know of that healing power because I’ve experienced it, watched it, witnessed it. I am witnessing it right now as I write these words. He is healing me of my hate, of my doubt of my fear. He is healing me of not-trusting, not-hoping, not-believing. He is a Good God, and He will be your strength in time of need. Adam and I are here, standing with you guys, speaking life and not death with you, and over our children. They were born for purpose, for the Glory of their God to be revealed in them as they experience life..and life abundant. I am so uplifted by your words Michaela. They are reaching so much deeper than you know. I love you and am here for you whenever you need a Fighter, whenever you need someone to war with you against the fear. I am not perfect, but I will be strong for you my sweet one. I believe you and Jay have been called for such a time as this.

    • Reply Michaela. July 25, 2012 at 9:20 AM

      Thank you my sweet cousin. I love you.

  • Reply Laur July 24, 2012 at 10:58 PM

    I’ve been following this blog for a while since stumbling on to it when researching placenta encapsulating….I work in a doctors office and have fallen in love with you and your little family. Florence is special. She is strong, and so are you. I have nothing but positive thoughts and will follow your journey with a heart full of belief for her. Love!

    • Reply Michaela. July 25, 2012 at 9:19 AM

      Wow. Thank you Laur for such amazing words!!

  • Reply Maripat Rawson July 24, 2012 at 9:32 AM

    Beloved believers,
    One leper returned to Jesus to thank Him for healing him of his leprosy. To that ‘one,’ Jesus said, ‘Be whole.’
    I believe with you that Jesus has spoken over Flo, ‘be whole, Flo.’
    And Flo is being made whole, entirely able to be the whole that God has made possible through the Blood of Jesus Christ.

  • Reply The Laundry Lady July 24, 2012 at 8:51 AM

    Michaela, I’m believing with you. I don’t have the words to tell you how I am feeling, my own pain for you is too much. But you are in my prayers. I don’t want to spout platitudes, but this saying has helped me in my own struggles with fear: Don’t tell God how big your mountain is, Tell the mountain how big your God is. I believe in miracles too.

    • Reply Michaela. July 24, 2012 at 6:59 PM

      This brought a lot of tears. Thank you.

  • Reply Dallas, Rena and Fat Charles July 24, 2012 at 8:06 AM

    Mickey, Jay and Flo – we are and will continue to stand by you guys. We never really and truly understand the full picture of news like this (like God’s tapestry being woven together and only being seen from the parts underneath). I can just say (through my own experiences) that suffering pushes us into places we would never have tread on our own.

    People need to read and hear your words Mickey, people need to follow your experiences. People need to understand Faith, Hope and Love from a Biblical perspective.

    Thank you for putting this experience out there for all to see and feel. When my mother was diagnosed and ultimately died of cancer, I didn’t have the courage to speak about it, let alone write about about it. I was taken down into deep dispare, self pitty and anger. We are encouraged by your words and your life.

    We love you and your family and will continue to stand with you in prayer.

    • Reply Michaela. July 24, 2012 at 6:57 PM

      Really appreciate it you guys. Thanks for the words!

  • Reply Janelle July 23, 2012 at 7:24 PM

    So glad to hear it’s not degenerative. I’ve been checking back every few days since you first posted to see if you’d heard the news. Is physio something that will help? Good to hear she’s very strong – that’s going to help her get where she needs to go. And i know from reading your blog, she has parents who are going to delight and encourage her in every step forward she makes 🙂

    • Reply Michaela. July 24, 2012 at 10:23 AM

      Thanks Janelle. She is doing physio and we’ve only just started but I’m hopeful it will really help her!

  • Reply Suzi July 23, 2012 at 2:29 PM

    Always. Always we will believe with you. I’ve said it before and I’ll say it again: we already know Flo is perfect and healthy and exactly as she should be. She has brought joy to so many already, most of all her smitten parents, and she will continue right on doing so.

    I ALSO believe in you and Jay – that you are stronger than this, that the One you believe in is stronger than this, and that your marriage is stronger than this.

    I will continue to hold your daughter with tenderness and delight, and to uncompromisingly demand that you and your man have a bi-weekly date night.

    • Reply Michaela. July 23, 2012 at 4:54 PM

      Suzi. You are amazing. We are looking forward to tomorrow night!

  • Reply Miriam July 23, 2012 at 1:31 PM

    No doubt in my mind… xo

    • Reply Michaela. July 23, 2012 at 4:53 PM

      need to hear these things. thank you Miriam.

  • Reply Mrs Loquacious July 23, 2012 at 1:25 PM

    Love that picture of you two! Flo is totally giving some feisty attitude to the camera with her eyes – love it! 🙂
    Thank you for being so raw on here; we weep and laugh and walk with you. Let us know if there is anything aside from prayer that we can do to bless you. And let’s figure out a good time to have a play date! 🙂

  • Reply NannyLou July 23, 2012 at 12:56 PM

    Why, of course we believe with you. Some folks are just plain ‘specially blessed by our Lord and you are holding one of His miracles in your arms right now. How can we do anything but believe He has touched you in a special way and through that, we all learn and grow right along with you. That little miracle child named Marigold for the sun and the beauty in the world will continue to delight you as you delight in her and we shimmy in side-ways to get close to such joy.

  • Reply Tania July 23, 2012 at 12:46 PM

    believing!so much believing with you!

  • Reply tdblue July 23, 2012 at 12:35 PM

    You and your beautiful family are in prayers and heart. If anyone makes me believe, it’s the three of you. God bless.

    • Reply Michaela. July 23, 2012 at 12:36 PM

      thank you for your kindness tdblue.

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