Florence’s story

Although this is a big part of our story right now, it is not the end of the story.

We are a family of four on an extraordinary journey of faith. We have a story to tell, one that is carving out deep places in us, rubbing our hearts soft and tender. We see everything differently now. We used to just live…our lives were simple and clean and uncomplicated. Yes, individually we had our heartache and struggles. I went through some major, life altering surgery, and Jay didn’t miss out on getting cut open and stitched back together either.

mauiFlorence Marigold was born perfectly healthy. I had a wonderful labor and pushed her out into the warm water.

At 3.5 months, I noticed she was having trouble lifting her head while on her tummy. She had some leg tremors that the pediatrician chalked up to delayed neurological development. Normal, he said. I took her in to my doctor and asked for a referral to another pediatrician, a few months later. The leg tremors seemed to have dissipated, but her weakness was starting to worry me. She this new pediatrician ran some tests, just in case–she really didn’t seem too concerned. Looking back, maybe I should have asked her what she really thought. Because that “just in case don’t be alarmed, this is nothing to worry about right now” test came back showing that there were indeed some missing genes in the makeup of our baby girl.2months

I was digging up potatoes from the garden when I got the phone call. I walked into the house, totally unaware of what was happening. I heard the sorrow in the doctor’s voice, begged her to tell me over the phone. You can read the full story of her diagnosis here.

6monthsFlorence was diagnosed with type 1 Spinal Muscular Atrophy (SMA). Our lives have changed a lot since then. I was blessed to be able to breastfeed her until 13 months until she was taken off of liquids and solids by mouth. She was in hospital for 7 weeks after being intubated with aspiration pneumonia. She got a GJ tube, and also wore Bipap (“non” invasive ventilation) to help her lungs expand properly during her nap and night sleeps.

hospital one year

family

Somedays it felt like everything was going wrong. I thought about losing her. I thought about the chances of this happening again (statistically 25% chance with each pregnancy). And yet, the best thing I did was push these things aside and keep my eyes fixed on Jesus. I am slowly learning to be brave.

While other babies learned to crawl and walk and roll over, she learned to blow out spit and bubbles so she doesn’t choke. She used to be able to hold her head up for small periods, drink breast milk and eat baby food. She could lift her arms up, first from the shoulders, then just the elbows and now she can barely hold onto a tiny, foam toy. Her precious mind was untouched. And she was brilliant and wise beyond her years.

She would shout love with her eyes, with her smiles, with her joyous laughter when I wrapped her arms around my neck and gave her a hug.

Mothering a child with a “terminal disease” didn’t get easier—it just changed over time. Before the diagnosis, I thought about what it would be like if she had SMA (not imagining that this would be the case at all), and I said: I couldn’t do it, we would probably divorce. I would crack into a thousand pieces of sorrow.

But we didn’t. We walked through every day. We had joy. Yes, we watched her suffer. But we lived each and every day.

18months

Florence began to lose more strength when she turned two, but she had a healthy winter season, with only one respiratory illness and hospitalization. Right before her second birthday, she fractured her femurs, and then a few months later, both of her hips. She was diagnosed with osteopenia (low bone density), and we sought treatment to strengthen her bones. It seemed to help, because she didn’t have any more fractures.

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AlviarPhotography_M.Evanow_July2014-2

I gave birth to a healthy son on August 25th 2014. He was born at home, so I could be next to his sissy. I didn’t want to leave her, even for a night.

AppleBlossomFamilies-1

AlviarPhotography_M.Evanow_July2014-8When Florence turned three we began to notice some changes in her well being. Her weakness was extraordinary. She was afraid a lot. She didn’t want to go out as much. She seemed to slow. Time slowed.

And then, two months later she took her last breath at Canuck Place Children’s Hospice in the middle of spring. We firmly believe in the power of palliative care, an often misunderstood form of pediatric care that is both life giving and life changing.

Florence and Theodore got to spend seven blissful months together before she passed away. He will always have a big sissy, and he knows her name and who she is.

We still believe the story isn’t over. She is still writing it. She is and was and always will be our little girl.

flo

Florence Marigold Evanow

March 7th 2012- May 9th 2015

34 Comments

  • Reply Rebecca October 28, 2015 at 4:52 PM

    Hi Michaela,

    I have been a follower of Flo’s Journey for a while now, but just spent the good part of this nasty rainy day reading through older blog posts that I had never read. Your writing is so captivating. I was both curious of how the journey began with Flo, and craved your eloquent, raw, and emotional words today. I found it so inspiring to watch you change and grow throughout this journey. I now know how you thought about SMA in the beginning, and what you believed for Flo, but we also know the outcome. I can imagine that this is something you never would have wanted to witness or succumb to, but I just wanted to tell you that after reading your story from beginning to end it is so obvious how much grace, courage and love you had while you navigated through such a tragedy, and for that Flo was SO lucky. I also wanted to point out something that you had written in a very early post, back when you weren’t even sure you were pregnant! You may have already have noticed this but you stated: “I’m a mama now, whether I hold you in my arms, or the heavens take you. I’m a mama.” This moved me SO MUCH, knowing how your journey unfolded with Florence. I know you are a mama to Theodore, but never doubt for a second that you will also, always be a Mama to sweet Florence Marigold!!! Bless her heart, and bless you Mama, YOU ARE AMAZING! So much love to you and your beautiful family. Never stop writing, as I know it does wonders for you, but also for us fortunate readers. XO

  • Reply Rachel April 16, 2015 at 7:01 PM

    Michaela,

    Thank you so much for sharing your story. Your quiet trust the the Almighty just floors me. Just thank you. Is. 41:13 “For I am the Lord your God who takes hold of your right hand and says to you, ‘Do not fear, I will help you.'”

  • Reply Giovanna April 14, 2015 at 9:51 PM

    Praying for you and Florence. God will make a miracle on her life – just keep trusting Him, Momma!

  • Reply Shelly VanBinsbergen November 26, 2014 at 6:14 AM

    I read your first article on she loves…I followed it to your blog and read about your Aidan…which resonated because on Oct 2, I wrote a very eerily similar post about my son Aidan, my firstborn. And then you introduced Florence…and our friends have two beautiful girls with SMA. I can’t believe God didn’t introduce me to you for a reason…I will be praying. Which means saying God’s name and yours simultaneously and thinking of you in the car and when I’m doing dishes and wondering and asking unanswerable things of God and Jesus on your behalf. I’ll hold onto hope with you. Even when you don’t realize you’re doing it.
    Much love to you, Shelly

    • Reply Michaela Evanow November 26, 2014 at 9:03 AM

      Hi Shelly,
      I don’t have a son named Aidan! That would be a guest post from This is Motherhood {too}. Written by Heather Bowie! You should check out her blog!
      Tanks for your words and prayers for Florence.

  • Reply Rhiannon May 5, 2014 at 9:44 PM

    Your daughter Florence, is so precious and stunningly beautiful! Thank you so much for sharing her story – and yours!

  • Reply Sarah Turnbull January 24, 2014 at 12:24 PM

    Hello sweetie, glad I found your blog. I’m Sarah, proud mama to Stella who has Type I SMA and is almost 7 years old. We were diagnosed at Mayo at one month of age and given weeks to months due to the severity of her SMA. It’s a rocky journey at times and we often say the first 3 years were survival mode and then we focused on “living”. Stella started out on bipap/feeding tube/cough assist the first three years as I’m guessing you are and then at three years we decided to trach her and she now goes to school and is one of the most popular kids in her class. Love to see her grow and we are given such blessings, aren’t we! Hugs and prayers. http://www.caringbridge.org/visit/stellaturnbullturnbull

  • Reply deedeedolores January 5, 2014 at 7:46 PM

    I know what it is like having a chronic illness. I’ve had fibromyalgia for twenty-five years. I recently put on two plays in a downtown theater, and more are planned. Jesus is keeping me here for a reason and I’m not going to disappoint him. Jesus has allowed your baby to have some setbacks for a reason, there is nothing random in God’s Kingdom, and He is in everything. There is nothing outside of His control unless we deliberately avoid Him. Even then, He is with us.

    We don’t know the reasons of His infinite mind – “Here we see through a glass darkly, then we shall see face to face:” I love the saying “He gives us health so we can do more things, but sickness so we can do better things”. You and your husband are doing all the better things, and your daughter is a darling example of God’s creation. Donna Gordon

  • Reply Amy R. Hunt December 24, 2013 at 2:39 AM

    Yes, you ARE meant to be. There is purpose in your weathering this together. It’s bigger than you or any of us can see. It’s far more than your little girl. The together part is huge. Truly, huge. I’m praising Him for His sustenance in our weakness and for the ways He weds us with our grooms in spite of our wanting to run away and hide and not accept or receive the love He gives them for us. {hugs}

  • Reply pamela hodges November 15, 2013 at 9:07 PM

    I found your story today on FMF, I read your story about the cherry tree, and then I kept reading. Your story is beautiful, your daughter is beautiful. I will pray for your family. Her smile will be hard to forget.

    • Reply Michaela. November 15, 2013 at 10:14 PM

      Thanks Pamela, for your prayers and words. It means a lot!

  • Reply Hayley October 8, 2013 at 1:09 PM

    I’m a fellow SMA mama and love that you can put into words so much of what I have felt through this journey. My sweet Beau was only with us less than 2 months after catching RSV which greatly increased the speed of the disorder. As with you and your husband, we have come out stronger on this side and my husband who did not really believe in God has come through this with eyes full of wonder at the awesome things that God can do in the midst of the storm. The sadness is overwhelming while at the same time, there is complete joy knowing that my precious boy is safe in the arms of Jesus and can run, stretch, and play–all those things he would never have been able to do here. Thank you again for your beautiful writing.

    • Reply Michaela. October 8, 2013 at 1:13 PM

      Hi Hayley, thank your for reaching out and writing. I’m so very sorry to hear you lost your baby boy. But I am thrilled to hear that your husband is filled with wonder, as you say. I would love to hear some of the ways God has moved and changed you guys, if you feel like sharing. You can email me: see contact. Thanks again for opening up.

  • Reply Christa Vanderham September 19, 2013 at 5:37 PM

    Thank you.
    Thank you for your breathtaking transparency, your tenacious hope that you credit to Jesus, and for being such a wonderful wife and Mommy through all of this. By His grace you are absolutely shining. All of you are.
    Looking at your blog is like looking at a beautiful illustration of what can and should be… Life trusting in Jesus. You know Him and so you have faith in who He is, not just what His hand can remove or add to your life; to your family.
    Thank you for sharing that and for being real in your brokenness. We are supporting you in prayer, even though tears burn my eyes and fall down my cheeks, He shows Himself to your readers/followers in the way you write and what you choose to share.

    “Those who know Your name will trust you. For you, Lord, NEVER forsake those who seek you.” Psalm 9:6

    Gentle hugs and so much love, because HE FIRST LOVED US 🙂
    Give your sweetheart daughter a little snuggle from someone else who is falling in love with her!
    -Your sis and friend

  • Reply Undiagnosed but okay September 6, 2013 at 9:54 AM

    What an incredible faith you have. Your are right, having a diagnosis might not make it easier. In fact sometimes I think it is more daunting. By Boo being undiagnosed means we haven’t been given the thought that she might have a shortened life. She remains a mystery. I wish you the best on your journey. She is absolutely beautiful and I am sure a joy you experience every time you see her gorgeous smile.

    • Reply Michaela. September 6, 2013 at 10:03 AM

      Thanks for writing. I know a lot of little mysterious ones. You never know what life is going to be like! But surely not what we expected.

  • Reply Whitney August 12, 2013 at 12:36 PM

    Thanks for sharing your faith and story. Living in that daily reality–where Jesus is King and has already conquered all–it’s incredible. The only way to live. I’ve certainly been in a place where health issues push me ever closer to Him, and I HAVE experienced miraculous healing, lifting my burdens to Jesus! I was mainly the one needing healing. When it’s one’s child–well, I won’t pretend to understand the heartbreak, hope and struggle.

    I want to briefly share a resource I feel so blessed to have found: westonaprice.org (cookbook “Nourishing Traditions”). They teach about nutrient-dense eating, and why natural food (even animal fats) are vital for our bodies (other topics: soaking grains and nuts, cod liver oil, pickling via fermentation, raw dairy). They have a love for children and young moms that I really appreciate. My family is so much freer from chronic sickness, including asthma, allergies and food and chemical sensitivities since eating this way! We were really concerned about our son at first (chronic issues picked up from me), but at 23 months, he is thriving. That was a walk of faith for sure, but nutrition definitely played a part!

    Anyway, though I haven’t seen from the trenches of your life, and wouldn’t pretend to have quick fixes or one-size answers, I wanted to share what has been an invaluable health resource for what was a very chronically sick family–my own! (I’m a writer and researcher, and love gathering info from others, so I’m hoping this may be helpful info). God bless you.

    • Reply Michaela. August 13, 2013 at 6:42 PM

      Thanks Whitney. Yes we have been following the a nourishing traditions way for a while now 🙂 I give Florence bone broth in her tube but as of right now it’s pretty tricky getting food in her J tube since it bypasses the stomach (where it’s broken down) and needs to be super duper liquified.

  • Reply Anita Kurney June 14, 2013 at 12:26 AM

    Greetings,

    Wow, what a ‘road’. Your strength is only surpassed by your love and faith. I am blessed with a daughter who lives with a rare form of Leukemia and is treated at Vancouver Children’s. I do believe that the ‘caretakers’ at VCH have wings tucked neatly into their scrubs and clinician coats during the day. I imagine they must relax when they can and use their quiet times to ready those wings for another angel to minister to. Your baby has the best care God’s gifts can provide. Your courage and steadfastness will see her through. Believe. I know. Blessings always, Anita xoxoxoxoxoxoxo

  • Reply cabanachatter May 22, 2013 at 7:44 AM

    Good morning Michaela;
    I just found your blog through a post on facebook and am reading to catch up on your story. I can see the miracles occurring all around you even as I have only read a couple of posts. You are such a courageous woman of God and an inspiration! It’s amazing to me to think that your previous journeys in the world have prepared you somewhat for seeing motherhood in such a different light…the struggles of the women in India and the conditions alone that they endure. I just wanted to say hi and to chime in that I am reading your storey and that it blesses me to see how you have chosen to give it all to God and to walk out in your faith.
    Stop in to visit if you are near the ‘store’ anytime! xoxo Carolyn

    • Reply Michaela. May 22, 2013 at 10:43 AM

      Hi Carolyn,
      Nice to hear from you! Thank you for that reminder. It’s all a tapestry being woven together…

  • Reply Lydia Johnson May 20, 2013 at 7:53 AM

    I just came across your blog via Pinterest. I was so moved by your story. I’ve struggled a lot with my faith since becoming a mom, three years ago. I don’t think my heart was really prepared for the intensity of motherhood. But your faith, in the face of your challenges, is so inspiring. I will be praying for you and your family.

    • Reply Michaela. May 20, 2013 at 11:21 AM

      Thank you do much Lydia for such an honest comment, and for sending your prayers and encouragement. I agree, the intensity of motherhood is often not talked about in depth. And it’s surprising!

  • Reply Krista May 5, 2013 at 9:26 PM

    I came across your blog through chance. I am not religious, and I am not a mother, but I was so deeply touched by your story. Call it a miracle, an exception, divine intervention…there are few people I can think of who seem more deserving of a medical triumph in the face of unfavourable statistics. You are so full of love, and I believe that there is power in that.

    • Reply Michaela. May 5, 2013 at 10:18 PM

      Well this might be one of my favourite comments so far. Thank you Krista.

  • Reply Liz April 30, 2013 at 12:55 PM

    I pray for you and your family everyday

  • Reply eighteencows April 30, 2013 at 12:09 AM

    Wow! Thank you for blogging! I just read a little bit for today as I’m heading to bed. But I definitely got shivers! I am excited to go on this journey with you guys via blogging! I will definitely be praying! All the best to you three! If you ever wanna read some dry humor about weight loss, I’ve got a blog too! (LOL)
    http://thegirlwholostseventyfivepounds.com/

    Can’t wait to start at the beginning and read it all! much love

  • Reply The Laundry Lady October 24, 2012 at 11:13 AM

    Michaela,
    I just published my family Advent devotional called, As We Wait. As I was doing the final revisions I thought of you often. The book focuses on the themes of promise, light, love and hope from throughout the Bible. I don’t know if you celebrate Advent, but I’d love to send you a PDF copy to enjoy with your family. Let me know how I can get it to you.
    -Bethany Vitaro

  • Reply Rivka David October 3, 2012 at 2:58 PM

    Michaela, I have been reading some of your posts, after a long break. Your faith is beautiful. I completely agree with your point of view, to focus on what you want and ‘the good stuff’ and leave the rest behind. I did similar with giving birth. There was always someone around ready to sell me a negative story, but I ignored the lot of them and focused on they way I desired things to be instead. I also actively searched out positive stories. The more I study, the more convinced I am that miracles happen when you not only focus on your desired outcome, but also FEEL the way you will feel when your desire is already there. Its almost as though feeling your desire already with you creates a vessel to contain that desire, so it can then manifest. Love and blessings to all three of you x Rivka

    • Reply Michaela. October 3, 2012 at 4:31 PM

      Wow, that is so beautifully put Rivka, and I can imagine myself doing that too. In fact I do, for the most part, accept those feelings, accept that the miracle occurred already and feel what it’s like to be whole. I appreciate you sharing that. 🙂

    • Reply Princess Beverley,( Grandma) December 2, 2012 at 3:53 PM

      This is very well put and so true! Our emotions and feelings create! Seeing the desired outcome with the Eyes of the Spirit, and feeling what it would be like when she is healed is a platform for miracles. Our trust again is in the finished work of the cross. It was enough, His sacrifice for our healing, deliverance and salvation from ourselves and sin.

  • Reply Bev. Nash (Grandma) September 29, 2012 at 3:10 PM

    Amen!

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