taking heart in a broken world.

May 27, 2013, Michaela Evanow, 8 Comments

Sometimes I feel so tired of this. This year of major shock and bad news and terrible diagnosis, this year of deep pain and complete lack of control over my daughter’s health.
I had 3.5 short months of newborn bliss with her, and then it all crashed upon be with such weight.
Oh, it’s been a long year.
This year of fighting for breakthrough and urging my heart to keep believing even though things appear to be worsening; of looking at others who have completely healthy children or those that had children that died.
I’m tired of hearing that SMA is progressive and that the doctors expect her to worsen over time and with each cold; of being asked if we are afraid to have more children. I’m am so damn tired of fighting for hope. I want it to be easy. But it’s not, life is wrought with unease.

I am tired of trying to explain to people that we love Jesus and believe in miracles even if they don’t. And yes, SMA has no cure and kids die from it all the time, but no, I don’t put Florence in that category and I do not accept the course that “nature” has set before me.

And then I look around and see the hundreds of people that have started following our story in the last month. Nearly 900 people on Facebook alone, strangers and old friends and people that are drawn to Florence and our hearts, that are fighting for miracles too. It’s a village of people holding onto hope. And I need you.

No mother wants to give up. But I did and somedays I do: I feel so heavy and cracked wide open, my head splitting with pain. I am overwhelmed by what this world has to offer: sorrow and imperfections, tornadoes and babies dying in the NICU, cancer and SMA, stillborns and divorce, adultery and train wrecks, human trafficking and rape.

But, then I remind myself:

“I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world. [I have deprived it of power to harm you and have conquered it for you.]”
John 16:33 AMP

This scripture is so much more than words for me. These are the words of my King, the One I willingly serve and trust. In an instant, my God can turn my tears into stillness, and make peace reign. My heart will be wracked with sorrow and yet when I call on His name and throw myself at His feet, He comes. There is such love in His eyes. I feel it and know it. And He grieves with me.
He is my Redeemer, the One that makes the distraught mother into a pillar of strength.
And so, although I’m tired, it is still well with my soul.

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Even though we will be leaving the hospital with a feeding tube and Bipap for nights and naps, even though she is “weaker” and does not “seem” to be getting better, I have a fire inside me, however dim it may appear, that simply won’t go out. I fear my buckets of tears have dampened it somedays, but then it rages and catches me off guard. This is not a fire that I have cooked up. It’s an impossible circumstance and I am only a first time mum: emotional, fearful, controlling. I want to protect my daughter from everything—and I can’t. I long for the days when my biggest worry was putting her bum in disposable diapers.

But those days are gone and my life has been changed. This fire in me and in you is the very flame of God, and may no man, woman, textbook diagnosis, doctor or circumstance dare to quench it.
Deep breath. Again.
Chin up buttercup, He has conquered the world.

8 Comments

  • Reply Sarena Wiebe May 29, 2013 at 1:15 PM

    Bless you <3

  • Reply Jolie Lambkin May 27, 2013 at 8:28 PM

    Your description of this suffering…I want to put suffering in “this mark” because I’m uncertain how you would describe your own circumstance. And this is why I must comment. Is to say thank you for describing so honestly, so clearly what hope feels like and what it looks like. Hope is a person. Hope is Jesus. Not a far away, abstract, dreamy idea but a real person who gives strength & vision. You amaze me with your clarity and perseverance. You display a miracle to me each day just by lifting your heart to God. That is the miracle to me. That you are writing, loving and sharing.
    Oh Michaela -and Jay and Flo – we love you.

  • Reply Diana May 27, 2013 at 2:17 PM

    you bring me to tears every single time i read your words of Godly wisdom. Amidst your pain Michaela you are ministering to 1000 or MORE!! as we share you and florence with those in OUR lives. Despite your trials you are standing as a witness and testimony to the overflowing grace of God as He leads you on this journey. Our Abba Daddy… is FOREVER faithful and those that hope (those that anticipate Him and stand in expectation of Him) in the Lord SHALL renew their strength!
    Isaiah….
    28 Do you not know?
    Have you not heard?
    The Lord is the everlasting God,
    the Creator of the ends of the earth.
    He will not grow tired or weary,
    and his understanding no one can fathom.
    29 He gives strength to the weary
    and increases the power of the weak.
    30 Even youths grow tired and weary,
    and young men stumble and fall;
    31 but those who hope in the Lord
    will renew their strength.
    They will soar on wings like eagles;
    they will run and not grow weary,
    they will walk and not be faint.

    As you continue to move in your faith The door swings wider. I know our ways are not His ways and His thoughts are not our thoughts…. I know we do not know the future or the reasons why. It is a comfort knowing that our Lord God is the same today as he was when He walked the earth. That he NEVER grows tired, weak or weary. The Lord has anointed You Michaela and i just want to THANK you… for pouring out his blessings into this world DESPITE a broken heart. For allowing us to come alongside you and your husband and Florence in this. Thank you for your honesty and for being unashamed of your weaknesses (for it takes the power away from the enemy!) For in our weakness HE MAKES US STRONG. Thank you for reminding US that Gods love is an all consuming fire and when he is at the centre He can give the strength that we need in that moment.. that will get us to the next minute, the next hour and the next day. I continue to lift your angel up in prayer to our Heavenly Father!!!

    • Reply Michaela. May 27, 2013 at 5:19 PM

      Yes is true, the lesson I’ve been learning is that God does not grow weary. He never tires, of us, especially. That gives me immeasurable strength. Thank you for taking the time to write Diana!

  • Reply Pa Nash May 27, 2013 at 1:10 PM

    My darling Michaela, I am undone at your loving confidence in our Father. I so stand with you in your position of faith and belief… really our position in His righteousness… He has done it all and we “hide ourselves in Him.” Resting… resting. Can be challenging as you know!!

  • Reply willowlost May 27, 2013 at 1:07 PM

    Dearest Michaela, I pray that He allows your heart to feel the gift you give to others through the sharing of thus difficult journey and that it provides some small measure of comfort for your pain. I have not been walking very closely with Jesus the past couple of years but when I read your words I feel Him close by and I am reminded of His unconditional love for me. I am so very thankful to you for that. May his peace continue to surround you and His strength become your strength whenever you are in need. Blessings Dear Girl… fron Shannon’s Auntie Sarah

    • Reply Michaela. May 27, 2013 at 5:16 PM

      This is very honouring and encouraging to me.Thank you Sarah for sharing openly with me.

  • Reply Kali May 27, 2013 at 12:24 PM

    Amen- your fire is unquenchable. His fire. Florence’s life, and your heart is changing the world. His strength in You is so beautifully powerful.

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