from the heart: the hard questions and the beautiful present.

September 10, 2013, Michaela Evanow, 17 Comments

Today I measured Florence and realized she would nearly reach my hip if she could stand. She’s 3 inches short of 3 feet! It made me smile, and yes, it made me sad. I wish with all my might I could pull her to her feet, and see her stand. I wish I could feel her little hands reach for me, cheeks brushed up against my legs, playing peekaboo with strangers.
She takes after her 6’6 papa. This is so fascinating to me. I grew a big girl!

She could be/would have been taller than me as a young lady.

Oh, how do I word these things properly: is it impending death? My daughter is dying? A “degenerative” neuromuscular condition? I don’t want to talk about it?

Will we one day let go, or keep pushing medical interventions on her?

Oh, how vulnerable this place is. Do I know that without interventions, her life would have ended many months ago? Yes, I do.

My life would have ended too, 100 or so years ago, before surgeons discovered they could operate on the spine and stop the progression of a curvature. I would have suffocated.

But I was “healthy”. Does this make a difference?

How long do we run? When you are pushed to the point of complete surrender, suddenly you aren’t afraid of death anymore. Suddenly, you know you aren’t in control, and the fear leaves. Palms wide open, heart at rest.

There is a lot of peace to grab from the heavens. When you’re thrown into situations like this, you have a heightened sense of clarity, of grace and of peace. I’m not even afraid of going to the hospital anymore, because I know my limits and I know my God.

You see, part of the reason we live in the moment, is because the moment is all we have. What we have is a little girl, that is not your average little girl. How her life will unfold is a mystery. She could live for many more years. We could see a miracle. She could pass away this winter.

What do I know? I know her life is precious, whether it’s 2 years long or 92 years long. She has the same value as the 89 year old philanthropist with Alzheimer’s, the 36 year old with breast cancer and four kids, the 62 year old with heart disease and a mortgage.

She was born and she lives and will live and has lived.

But most importantly, we have the opportunity, the gift of being her parents.

We are privileged to call her daughter. And if we look at her life, measured in it’s fullness, not by the number of days she will live, not by status or belongings, accomplishments or milestones, if we strip it all away and look at her beautiful heart and soul, then we come to realize, she has a purpose, and she’s living it out the best that she can.

She’s living it out, in all it’s fullness. And in turn, she’s teaching us how to do this too.



  • Reply Chelsea Chalifour October 25, 2013 at 10:13 PM

    I so agree with Sue, absolutely beautiful. The most beautiful post yet. I loved your insight on how when we surrender fully we don’t fear death. It made me see those parts within myself that have been hidden deep down, that control and fear and aha! are not surrendered. It also showed me how beautiful surrender and peace and love is. And you have so beautifully identified how we are all the same, and our very existence is powerful. And just that. Not how long we exist, or what it looks like, but our being, and living, and breathing is itself that miraculous essence of life that God created, and we are his magnificent creation, walking out his destiny through our very being. Florence is God’s amazing, stunning creation of love. And she gives and reveals God’s love perfectly. And you are her most amazing mama. Clearly God chose perfectly in you – a mother who loves fiercely and calls forth life and defends and sees his glory and leans on him. What you have to say is so touching and your heart is so incredibly powerful! I am in awe of you.

  • Reply Katrina Cutbill September 18, 2013 at 11:03 PM

    I don’t know what to add to the comments already made – you write so eloquently about the joy and the pain of being a Momma to Florence…and yes, you inspire me greatly to live a life where I am fully present in the small moments as well as many other things – all of them good. So, thank you for writing and for being you. I see so much light in you.

    • Reply Michaela. September 19, 2013 at 8:34 AM

      Hi Katrina, thanks for your heartfelt words. Means a lot that you took time to comment.

  • Reply Kali September 17, 2013 at 11:56 AM

    Your raw honestly challenges me everytime I read… to write, sing, dance, pray, LOVE and LIVE from a different heart place. It’s an expanded place, as well as a stripped back place. No room for hiding, for pretense, for doubt or fear…a place of fullness: joy mixed with sorrow, contentment mixed with longing for more. It’s the real & true place to live from. It’s Jesus in you, and Jesus in me, and it is such an honour to bear witness to. We are a blessed people because of Florence and because of you & Jason living wholeheartedly. Thank-you Jesus for this family: bless, cover them with daily balms of love and bring your sweet healing and fullness of life to each one.

    • Reply Michaela. September 18, 2013 at 8:10 AM

      Thanks Kali–this means a great deal to me.

  • Reply The Laundry Lady September 17, 2013 at 5:12 AM

    I have tall little girl too. Lord knows she doesn’t get it from me.
    None of us knows how much time we have with our children, the difference is that you are reminded of this fact daily and have learned to cherish each day because of it. I admire you for your determination and positive attitude. You’ve found the blessing in the suffering; you treasure your daughter daily, hourly, the way we all should our own children, because you don’t take the time for granted. I am inspired by your journey. I hope it motivates me to love my own children more and better. Continued prayers and love for you, your husband and little Flo.

    • Reply Michaela. September 17, 2013 at 7:53 AM

      Thanks Bethany. Yes the daily reminder does put things into focus, all.of.the.time. Which is why it’s sometimes just so hard, but also a blessing. Turning the heart away from bitterness is the hardest I think. Thanks for sharing from your heart.

  • Reply Christine September 16, 2013 at 8:28 PM

    So much love and wisdom when you write from the heart like this. All of us have someone for whom life is more obviously fragile. Thank you for sharing such a great perspective of living the moments we are given to the fullest.

    • Reply Michaela. September 16, 2013 at 9:40 PM

      Hi Christine,
      Yes it’s true, we all touch fragility, don’t we? Thanks for sharing.

  • Reply krystalthwaites September 16, 2013 at 5:48 PM

    <3 You grow my heart when you write. The perspective is a gift. Your daughter is a gift. Thank you again.

    • Reply Michaela. September 16, 2013 at 7:00 PM

      Thank you for this. Growing hearts is what I long for…

  • Reply Nanny September 16, 2013 at 5:32 PM

    Words in response seem far too little – Your anguish, your pain, your joy, your hope, your sadness, your optimism, your mourning, your hope – all these things are so much more than I am

    • Reply Michaela. September 16, 2013 at 7:02 PM

      Well I’m glad you see hope twice. I love your comments. They are always from the heart 🙂

  • Reply Sue September 16, 2013 at 4:46 PM

    Michaela, I think this is your most beautiful entry ever. Love to you all xo

    • Reply Michaela. September 16, 2013 at 6:59 PM

      Sue, really? Well, I wrote is so quickly….Thank you. What makes you think so?

  • Reply Mrs Loquacious September 16, 2013 at 4:10 PM

    D is 33″ too! We both have tall girls who entered this world long and big 🙂 In our case, though, I’m not sure where the height come from since I’m so short and J is only 5’10″… May you enjoy every minute of the present to its fullest, Michaela! 🙂 We often think of, and pray for, you all!

    • Reply Michaela. September 16, 2013 at 4:44 PM

      Thanks Mrs. L. I can’t believe Dara is that tall either! Way to go!

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