what I wouldn’t change about this journey: these defining moments.

October 22, 2013, Michaela Evanow, 8 Comments

It was nearly Thanksgiving, and the grocery store was chalk full of people buying canned pumpkin, fresh cranberries and bags of brussels sprouts. I was in Whole Foods, gathering goods on a lazy Saturday. Jay was at home with Florence, and like always, I was enjoying my time alone.

I saw her then, in the aisle with the juice boxes. She had brown hair and bangs, a sweet smile on her face. She was talking a mile a minute to her mama. She was holding on tightly to a walker, limping along the aisle. She seemed to be working hard to pull her little body around. I fell in love with her then, right there with my hands gripped around a shopping basket. My heart started pattering away, hard and loud, and I knew I was going to say something, perhaps awash with tears. Before Florence, I probably would have smiled and walk on by. But I approached them, so overcome by their beauty. I can’t quite explain it, other than it’s simply the heart expanding that takes place while our story is being written. My eyes started spilling over as I touched that mama’s shoulder, and told her that she was amazing, she was so valued and and I appreciated her being here. I began to share a bit about Florence, and explained that I understood parts of their story. What I didn’t tell her was that I also understood that it takes extra time and bravery to take your little one into a public world, where people will always stare. And I would give my all to have Florence walking beside me one day, limp and all.

I looked that little angel square in the face and told her she was incredible and strong and so beautiful.

She smiled, chin tipped up, and looked me in the eyes. Blue as day, flooded with life. I’m five years old, she exclaimed. She bit her lower lip and shrugged her shoulders, and began to explain to me that she was in kindergarten. I could tell, she knew that her struggle to walk wasn’t “normal” and she knew I wasn’t pitying her, or staring at her. I just saw her. Little heart, beating in this world.

I was so close to breaking into the ugly cries. The mama, obviously well seasoned, asked about Florence and how old she was.

The woman explained that her daughter, the one walking right now, wasn’t able to move an inch at 18 months. She was born with cerebral palsy and it’s been a lot of work and hard effort to get this far. But, she pressed on, so keep going!

I knew she was trying to encourage me. I almost piped up and explained the nature of SMA, but felt a heaviness on my heart. No, I would simply receive her encouragement.
Not in denial, not to make her feel good, but because deep down inside, that is the kind of hope I cling to.

Her story was telling me that miracles happen, that walking happens when the doctors say it won’t, that life happens when there seems to be no way.

And my story wanted to say: I know, but…but…you don’t understand.

I decided in that moment, I was tired of having a disease define Florence. So I agreed. Yes, we will keep going and keep pressing on.

I have cried myself into tiny wrinkles, and I’ve seen the growth of some gray hairs. I’ve been seasoned by grief and an enormous struggle for so long. There are many things I wish I could change about this journey. I wish I could rewrite this tragedy. Right now. Not tomorrow, now.

I realize I can’t erase these things. I’m along for the ride.

One thing I have noticed, is that our story has unfolded my heart, and crease by crease, expanded my understanding of life and of love.

All life is valuable: whether it’s two months long or twenty-two years long. All children are beautiful and priceless gifts: in this city, in the wet slums, tucked away in the womb, abandoned on the street. Children with different needs are incredibly aware. And you know what? These kids, and their parents feel the stares of curiosity, or of pity. And those stares are undeserving.

So give love. Love wide and far with your eyes and your words.

Wrap those that are poor in spirit in your arms, even if your arms feel broken too. Because we are all broken at some point, crushed in spirit, but blessed are they, for theirs is the kingdom of heaven (Matthew 5:3)

This is what I wouldn’t change about our story: this love, this stretching, this capacity to open wide and receive even when my spirit is crushed. I’ve been bound by the ache in my heart somedays. I’m also bound to the hearts of other parents that have walked similar paths. We are bound and set free by the very thing that tries to define us. But it’s not the storyteller, this condition, this hard walk, this disease, this sorrow. It’s not what defines us.

We are made up of Love.

heartache may bind us, love defines us

8 Comments

  • Reply Raising Faith October 24, 2013 at 9:51 PM

    Your writing, and your heart, are beautiful. Thank you for this; our family’s special needs situation is much different and less fraught, but I spend a lot of time trying to explain what it might look like to live in a world where individual differences and abilities are simply expected, with all their unique joys and challenges, as part of this bittersweet life we share.

    Wishing you all days of beauty and love. <3

    • Reply Michaela. October 25, 2013 at 1:41 PM

      Thank you, so much, that’s very kind of you. Yes, that’s my dream too. Starts with the parents! 🙂

  • Reply Jennifer October 23, 2013 at 11:40 AM

    Here is the thing. Both Florence and this little 5 year old girl are not actually poor in spirit. Yes they have physical issues that inhibit them from doing things, but we all do and deep within them is the same capacity to love and be loved. That is really all that matters, as it is love that defines us. My 14 year old daughter with Down syndrome is a reminder to me everyday that in spite of the many things she cannot do, there are so many things she can do. She gives straight up affirmation–the true kind. She will tell me how great I am at making soup in a way that makes me realize how blessed I am to be able to make soup. She will stop mid-step, look at the sky and say, “It’s great to be alive!!!” when the rest of us are just existing.

    • Reply Michaela. October 23, 2013 at 11:44 AM

      Yep and although these children aren’t poor in spirit, their parents may be. I have been, because it’s not easy. I have been broken and crushed in spirit. That’s what I’m talking about.
      I can’t speak for these kids, but I can speak for myself.
      And yes, love defines us, like I said. All of us. I hope that clarifies for you what I was saying! If not, I “clarified” it for you on the blog. Although our kids have very, very different issues, I get where you are coming from. But if you know me, you may know that’s not my heart, and NOT how I feel about my daughter. Or your daughter. I’m sorry that one line hitched you, and the rest didn’t come through.

  • Reply Lauren October 22, 2013 at 10:22 PM

    Oh my ugly tears are coming now. Every time I read one of your blog posts – I fall more and more in love with your family and your struggles – because its your struggles that make you beautiful and wise beyond time. I could go on – but I wanted to tell you that your story and your love has changed MY life for good. Long story short – I have made the decision to go into nursing and be the nurse that brings parents relief and maybe a smile or comforting hug. I want to be the nurse the babies aren’t scared of but look forward to seeing. I want to be the empathy and heart that may be missing elsewhere in healthcare to make up for it. So much love for you all. Seriously. Always ALWAYS in my thoughts. xoxo

    • Reply Michaela. October 23, 2013 at 11:14 AM

      OH my goodness!!! This is so wonderful to hear! Lauren, you will make an amazing nurse! And all the hard work ahead will pay off. You should work at Canuck Place one day. Your heart is so tender and loving, and I just know you will make an incredible nurse!!! Thanks so much for sharing!! Lots of love to you!

  • Reply Emily October 22, 2013 at 2:05 PM

    Thank you for sharing your beautiful story. I am part of a home church that has spent the last month exploring what it means to love on the marginalized, the “other-ed.” And the conclusion that revisits us over and over, in abundance, is that there is no “other.” There is only an “us,” to love and to nourish and to encourage and to embrace. And I am so grateful for Florence, who is the essence of that human worth and value. Florence, like the little girl at the grocery, is a treasure.

    • Reply Michaela. October 24, 2013 at 10:17 PM

      Hi Emily, that sounds like a great discussion for a church. Just Lovely.

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