the fall, the fear and most of all, grace.

October 16, 2014, Michaela Evanow, 14 Comments

As the majestic neighbourhood oak trees release their golden flakes, my mind begins to flashback. That first touch of crispness in the air makes my shoulders sag a little. Cold, blue black fear starts to inch it’s way in. Inky stains on my wild and free summer kissed heart.

Trauma will do that do you, I suppose. Steal, remind you, make you anticipate the worst.

Autumn brings colder weather, spreads germs, sends in sickness.

But I love the fall. I love it with my whole being. I was born in October, met my husband in September, married in October (the following year). Spice and late autumnal sun and warm gray skies run through my veins.

I love wearing fingerless gloves, and wrapping my hands around a hot mason jar full of chai. I love the sunny cold days and the rainy candlelit days, too. I love celebrating, giving thanks. and picking pumpkins, if only from the cardboard bins at the grocery store. Apples taste sweeter, unfiltered cider will simmer on my stove. I love crockpot fare and tucking into my tins of tea and herbs.

This year I have a jar of fire cider sitting on the shelf in the basement. Jalapeños, ginger, onion, lemon, garlic, fresh turmeric and horseradish, all doused in raw cider vinegar. A teaspoon a day to keep the sickness away, or so I hope. I make elixirs and teas, grinding and combining, stirring and storing. I distract my mind by making concoctions in my tiny home apothecary. Rosehips are an excellent source of vitamin C, in fact, the best you can find. Elderberries boost the immune system and taste divine. I’ve finally splurged on some spicy therapeutic grade essential oils for rubbing on the soles of our feet.

I’m prepared to ward off the black plague.

I’m also readying my heart for the lonely, dark winter ahead, when friends graciously call in sick and dates get pushed back until colds and flus are free from their households.

I’m preparing as best as I can. But I know all my hard work can easily be poured down the drain.

A simple cold in our home can land us in the Intensive Care Unit at our Children’s Hospital. It can lead to death. I’ve seen it happen to other children with the same disease that my daughter has. And now, I know so many more children and families with this disease and they face the same battles. It’s a community no one wants to be a part of, but one we must lovingly commit to.

Will this year be it? How much longer? I wish I was strong enough to guard my heart. Now, now, chin up buttercup, carry on and fight.

Until you’re in the thick of it, and everything is crumbling, hollow and hellish.

Not this year. Not this year.

Even still, the beauty of fall and life itself carries on. I can’t help but take delight in it all. We’ve lived through two autumns. Two winters too. We’ve seen sickness come at us hard in June and October, so really, we don’t take any season for granted. We live in a crazy, bubble wrapped world, trying to protect our girl. And yet, we are still not immune.

But we are also slowly, slowly uncurling fists and training ourselves to live.

Grief, we see you and feel you, and don’t hate you. Fear, we’re not ashamed of you, but we’re tired of you. We’re learning to dance with you all in this season, but mostly…we are searching for that strength to put you to rest somedays too.

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  • Reply Idelette October 17, 2014 at 10:48 PM

    Deep breaths right here …

    I’m here. We’re here. I don’t have many more words than that and it doesn’t feel like enough, but we’re here … imperfectly so.

    Love you, xoxo

    • Reply Michaela Evanow October 20, 2014 at 5:12 PM

      oh…Idelette, thank you for being with me. You do it so well.
      You, the other She Lovelys have been a massive gift to me this year. Love you all so very much.

  • Reply Sarah Fairbrass October 17, 2014 at 10:06 PM

    I’ve been thinking and praying about you a lot lately, knowing this is a difficult time of year for your family. May wee Flo continue to be blessed with health and happiness. I hope knowing you are in the thoughts and prayers of so many is a small measure of comfort for you Michaela.

    • Reply Michaela Evanow October 20, 2014 at 5:12 PM

      Thank you Sarah.

  • Reply Olga October 17, 2014 at 12:25 PM

    Hi Michaela, I have been following your blog for about six months now. You have an amazing talent to put feelings into words. I cannot imagine what your family is going through with little Flo! This seems so unfair. I have two little kids and cannot imagine my life without them. By any chance, have you heard of stem cell therapy for SMA kids? I frankly did not do too much research, but came across a few studies in the area, which are very promising. There is a very talented Dr in Colorado (Dr. Kenneth Pettine), who I know a little bit, who pioneers a lot of research in the area. I also saw this: Please disregard my message if this is not something that could work for Flo. I just wish there was something that could be done for her. She is precious.

    • Reply Michaela Evanow October 17, 2014 at 3:18 PM

      Thank you Olga. Yes it really is not fair. We have heard of stem cell research but we live in Canada and access to stuff like that isn’t really available to us. Also I believe the children have to be infants. Thanks again.

  • Reply Shelli October 17, 2014 at 10:01 AM

    My heart breaks for you. I am praying for your family! May you all have many more falls, winters, springs and summers together.

    • Reply Michaela Evanow October 17, 2014 at 3:18 PM

      Thank you so much for your prayers. That is so kind of you to be thinking of us.

  • Reply Nikki October 17, 2014 at 8:53 AM

    Oh Michaela. Finley was in the PICU for 1 week this month after a simple cold brought home by her big sister landed us with pneumonia and a collapsed left lung. We almost lost Finley. I’ve never been so sick with grief. I was traumatized. Still am. I lost ten pounds in one week, and I’m already just little! I can’t believe Finley is actually still with us. Home and safe now. Now, I’m so scared. People visit. Touch her face. Kiss her cheeks and share their love with her. But in my head I’m screaming “Get Away From Her”! “Don’t Touch Her.” I hate this. I hate this worry. Just a stupid little cold. 🙁

    I actually pictured a community or little town where just families of SMA lived. Our kiddos would love each other. Understand each other. Laugh together. Us parents could be free from all the curious glances. Sad looks and hugs. We could just live happily and germ free as we’d all understand the need to be so careful and would respectfully stay away until illness passed.

    I’m thinking of you. You’re not alone. All we an do is our best and then leave our little ones in Gods care and pray for His grace to let us enjoy them longer and bless us with more time.

    • Reply Michaela Evanow October 17, 2014 at 3:32 PM

      Hi Nikki, I was following along with your stay in the hospital. So glad that Finley recovered and wasn’t in hospital for long! A week! Whoa. The shortest we’ve been in is 11 days, the longest 7 weeks. Finley is a strong girl.
      I think the commune sounds wonderful. A bit like heaven actually…:)

  • Reply Diana Stone October 17, 2014 at 7:48 AM

    I found your blog from my dear friend Grace – her daughter Nella has SMA Type 1 as well. I don’t know of your specific pain, but I’ve lost 3 sons shortly after birth (my twins at just minutes/hours, my son last year at 3 weeks old) and so much of what you write speaks to my heart. You are a beautiful, stunning writer. Thank you for sharing your story so candidly – Florence is just adorable and what a gift you’ve given her to have her life documented in such a way. <3 I'll be following and praying and nodding my head along as you write.

    • Reply Michaela Evanow October 17, 2014 at 3:19 PM

      Diana, it sounds like you have been through so much. I’m so very sorry to hear of your losses. But thank you for sharing with me and for your encouragement.
      We love Nella and Grace!

  • Reply Debbie Tuit October 16, 2014 at 11:01 PM

    Michaela, once again , you haves managed to take words, loves, and fears out oft heart and soul. Fall maybe my most fab time of year. We have had the most glorious Spring , Summer- and now Fall ever. But I , and Nick suffer auto immune disease. I am careful. He has no idea. I so get the love/ hate relationship with Winter approaching and all it’s follies. Then we get barraged with eboli reports etc it scares me. Can’t imagine what it does to you. Yet here we are. Year two. And precious Flo, keeps on trucking. Your care thousands of prayers. Please know how often we think , remember and believe for her healing. Love you kiddo.

    • Reply Michaela Evanow October 17, 2014 at 3:21 PM

      Debbie, thank you–it’s so nice to hear from you again. And thank you for believing & standing with us.

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