love will lead us // part 2: on our second pregnancy and making peace with uncertainty

May 7, 2014, Michaela Evanow, 46 Comments

I have tortured myself with “what ifs” for too long. I have allowed myself to be influenced by what others might think. I have seen the facts on SMA, seen the steps involved to prevent SMA again (genetic testing, abortion, preimplantation genetic diagnosis, adoption [this is a wonderful option!], stop having children). In that world, having children naturally isn’t an “option” anymore although the odds are in our favour.

It is scary to step out and say “we broke your rules,” and then wait for the backlash, the punishment of judgement. It’s scary to tell people we aren’t doing genetic testing. And yet, it’s tiresome when people find out we are pregnant and the first thing they ask is will we do testing? I’ve spoken to others mothers who are pregnant or have been and carry SMA. They are terrified, and scared, of words of judgement, of not being accepted. It breaks my heart. I wonder if the system of the world thinks we are irresponsible, because it wants to corral us? I have seen this system fail, time and time again. It has failed our daughter, it has failed countless others, in thousands of ways. It’s not what we rely on. 

As people of faith, perhaps this doesn’t make sense to you—this choosing, this free will, this trusting. All I can say, is it makes sense to us, and it’s the only choice that brings peace to our hearts.jay and i

Sometimes we come across those that don’t understand, or their truth is written across their face: I don’t have hope for you. I am afraid for you. Do you know what you’re getting yourself into? This, of course, is all masked under a smile. Sometimes the difficult circumstances in their lives dictate their hope or expectations. I’ve been there too.

But mostly, we come across those that treat us like we are expecting a baby. A real baby. They celebrate our pregnancy, they celebrate new life, but most importantly, they have great expectations. They have been jubilant. From nurses at Canuck Place, to therapists involved in Flo’s care, and most often, our incredible family and friends. I do not take this lightly. When people that don’t carry the same beliefs as us, rejoice with us? It has made me crumple into a mess of tears countless times. Thank you. Thank you.

Just recently, we met with three neurologists, including the one who had diagnosed Florence. She saw my blooming belly and congratulated me. She asked if we knew if baby was a boy or girl. I stammered, “Uh, well, no. We aren’t finding stuff, these things…well, I already had the ultrasound, and, we didn’t find out—“

“So, you aren’t doing any testing?” she smiled placidly. 

“No. No, we aren’t.” I had waited for this moment for ages, played a scenario in my head. They would shake their heads, tsk tsk. They wouldn’t understand. They would yell at me. They would feel sorry. They would project fear onto me.

“I can feel this baby moving a whole lot. I’m happy to just wait. This is my child, no matter what, no matter what happens.”

The male neurologist threw his thumbs in the air, a beaming smile on his face. “Good for you!” he exclaimed. 

My hands quivered as I answered their questions about this current pregnancy. Does it feel different? Does the baby move more? I’m not sure, I answered, but it does feel different. I knew they might not all agree with our choice, but they didn’t let it show.

After they left, I had a little cry, an outburst of fragile pregnancy emotion poured out in the hallway.

My baby. Baby child, quickening in my womb, you are our greatest leap of faith.

Do we trust our God? Is that enough? Is it easy to fully rely on Him? Does it feel crazy? Do people secretly judge us behind our backs? For us, our faith is being put to the ultimate test. We are not in control, we are making decisions in faith, and we are waiting, while a life grows in my womb.

***

We are moving forward with conviction that God is good. Even in the dark nights of faith, my husband and I keep pressing in. God is the giver of good gifts. He is the God of redemption. He desires to see life abound, to see His children thrive. And yet…we have a fragile two year old under our wings, and everything points up and down and sideways. It seems that God isn’t in the picture somedays, when Florence has trouble breathing, or her bones fracture once again.

It’s really easy to lean into the now and assume this will happen again, because, why not? It happened in the first place. It’s easy to question: where was God when Florence emerged from my womb, born beautifully into warm waters carrying a deadly genetic code into this world? It’s easy to imagine another water birth, another diagnosis. I still remember the dirt under my nails, the garden potatoes, the phone call. I still remember the pain and grief of the diagnosis. And I admit, part of the reason we aren’t doing genetic testing is because it terrifies me more than waiting. Needle in my belly, waiting for test results. I shudder at the thought of it. I know many families that have chosen that route knowing they will keep their baby no matter what, and I cheer them on. Some need to know as soon as possible, perhaps still dealing with the grief and loss of another child. 

It’s not always easy to choose hope. To choose to wait, trust, and enjoy this pregnancy. It’s not easy when I’m nauseous and throwing up and we’re in the ER all day, and I’m thinking: what are we doing?! We. Can’t. Do. This.

My one word for this year is brave. I am no hero, and I am not brave by my own merits. Every time I feel the urge to freak out and fear that this child will have SMA, I stop. I stop, reign in my thoughts and imagine this little one tottering around the house, standing beside Flo and learning to stroke her face gently. I picture a little sister, one that loves and nurtures Florence, understands the fragile human condition, understands faith in action. I picture a little boy, exclaiming that his big sister is the “bestest in the whole wide world.” (Ok, maybe I picture a little girl more often 🙂 )

I picture my child smiling at children in wheelchairs, children with feed bags, oxygen tanks, completely unfazed by their equipment. They are like Flo, mama! And I love them so. 

After I push the fear back, I calm and I centre my racing mind, and I thank Him. I thank the One that has given us courage to move forward. I thank the One that I used to scream at in pain and terror and misunderstanding. I thank the One I cursed on the kitchen floor that gray day.

I thank the One that gave us Florence.

And I trust, even when I don’t, that everything will be alright. 

Soon. One day. In that brilliant place of eternal peace. Soon, when our little heart will lay nestled in swaddling cloths at the end of summer.

New life, new hope.

Selah. סֶלָה‎, 

46 Comments

  • Reply love will lead us // part 1: on our second pregnancy and choosing hope – Michaela Evanow March 18, 2017 at 12:58 PM

    […] Read Part 2. […]

  • Reply in the unchartered wilderness – Michaela Evanow March 18, 2017 at 12:11 PM

    […] and with a deep breath say: God, my mother flesh doesn’t know how to trust you very well on this journey, but my mother spirit knows Your […]

  • Reply Natalie October 4, 2014 at 4:23 AM

    The greatest gift a child can have is parents who pour their love into them. What a sweet and precious gift both of your children have to have you and your husband as parents and the love of your family around you.

  • Reply Lulu August 29, 2014 at 4:13 PM

    Michaela, I’ve popped onto your blog here and there, always finding comfort and inspiration in your words. We live in the same city as you, and your blog has been referenced once in a while by members of my daughters care team. We, too, have a daughter with a neuromuscular genetic disorder. Despite extensive testing, we still don’t know the underlying reason and have wrestled with this decision of whether to have another child. Not knowing what the probabilities are is so scary, but the more time passes the less afraid I become. Partly because our daughter is making progress and partly because we are learning that despite the challenges that life has laid in her (our) path, she has brought insurmountable happiness and inspiration into each life she has touched. I know that no matter what happens, it all does so for a reason. Perhaps we will be as brave as you and bring another little miracle into the world. Congratulations on your leap of faith – I just read your birth story – beautiful Florence is a big sister. Thinking of you in these early days. xo

    • Reply Michaela Evanow August 31, 2014 at 4:19 PM

      Hi Lulu,
      Thank you so much for sharing with me. I’m so glad you have found comfort here. That is such a blessing for me to hear.
      It is scary, it really is, making the leap. Ultimately, the decision you make is yours, and you will find peace in it. I wish you so much peace and bravery and hope. We haven’t had Teddy tested yet, but we just hold onto hope that he will be well. We have to. And we know that there is grace and each life, of each child, is so precious and such a gift. The life we live is filled with shakiness, uncertainty and pain. But there is beauty in learning to live with the tension, and find our rhythm.

  • Reply Meg August 20, 2014 at 3:46 PM

    Just read both parts of this post. I had a high risk pregnancy with my son, and despite countless doctors/specialists urging us to abort or opt for amniocentesis (which carries risk) at 18 weeks, we chose to move forward without any sort of testing. Because, similarly, we decided we would go forward with the pregnancy no matter the test(s) outcome. Our son is 100% normal but we “beat the odds,” or as one not-so-thoughtful friend said, “dodged the bullet,” and I am on the fence about whether or not we will try for another…so 2 questions for you:

    1) How did the “system of the world…fail your daughter?” Isn’t it also contributing to a better quality of life for her?

    2) Suppose the risk was not 75% in your favor but only…say…10% in your favor…would that have changed your decision to move forward with pregnancy #2?

  • Reply In the Unchartered Wilderness - SheLoves Magazine July 11, 2014 at 12:03 AM

    […] and with a deep breath say: God, my mother flesh doesn’t know how to trust you very well on this journey, but my mother spirit knows Your […]

  • Reply Leslie July 6, 2014 at 8:15 PM

    Hey Michaela. I come in and read your blog every once in awhile. I love your delicious use of words, your vulnerable heart, and reading about your precious little girl. In December 2013, we, too, found out we were expecting. I was on laid up on the couch for three months. Sick, exhausted, but thankful. Three months later, the sickness began to subside, just like it did with my other 2 pregnancies. But it went away too fast. I felt better too soon. I had no idea, and I just knew. We lost him. His development hadn’t been healthy – he wouldn’t have survived. We weren’t able to get the chromosomal testing to figure out why it happened, but I just want to encourage you – SMA isn’t the worst thing that could happen. Even if it does, you’ll still get to love on this precious baby and be loved, and smell her and snuggle her (or him) and relish in being a mama twice. As I’ve grieved our loss, I’ve thought about how perhaps we were spared raising a child with abnormal chromosomes. And it doesn’t make me feel any better. Because every child is worth loving with a heart-aching, nausea-inducing, life-altering love. Be not afraid. Be thankful, thankful, thankful for this precious life!

  • Reply Courtney May 29, 2014 at 8:48 AM

    Beautiful. I read both parts of these posts and just cried. So grateful for you for sharing your heart. We have the same 25% chance of Harlequin Ichthyosis and have chosen to stop having children. Others we know have chosen to keep trying, still others abort when they receive less than happy news, and others undergo pre-selective implantation. I don’t think there is a right answer, and I’m glad to read about your confidence and contentment with your decision. I am so happy for you to be welcoming a new life!

    • Reply Michaela Evanow May 30, 2014 at 6:08 PM

      Courtney, thank you for sharing this. I had no idea HI was genetic too.Some conditions are genetic but the changes of reoccurrence are like 3% or something.

      It’s encouraging to me to know you have an unaffected son, and a beautiful daughter, and that you are moving forward with life.
      Love to you!

  • Reply Sarah May 27, 2014 at 7:20 PM

    I love that your word for this year is brave!! Have you heard this wonderful song called “you make me brave” by Amanda Cook? It is powerful! May you be encouraged on your journey. Here is the YouTube link:

    https://m.youtube.com/watch?v=6Hi-VMxT6fc

    • Reply Michaela Evanow May 28, 2014 at 9:13 AM

      Oh yes, I’ve definitely heard that song 🙂

  • Reply Katrina Cutbill May 25, 2014 at 9:03 AM

    I’m excited for you and your family on this new journey!! I am also expecting baby #2 at the end of summer. August 20th due date :). You are such an inspiration to so many – love to hear you speak so boldly of your faith and the One who upholds us.

  • Reply Bethany V. May 9, 2014 at 8:57 AM

    Michaela, I some how missed this post until just now. Congratulations! I got pregnant with my son shortly after a miscarriage, and while I know my situation can hardly be compared with yours, I understand the moving forward in faith.
    “And I trust, even when I don’t, that everything will be alright. ”
    Such words to live by. I’m there with you. We want to have another child, but I still feel the fear whispering in my ear. What if I have another miscarriage? What if I get diabetes again and I can’t manage it? What if I clot and hemorrhage again after the delivery and end up with a D&C or hysterectomy? But I can’t think about those questions too much. So I just focus on getting my body healthy and waiting to feel at peace, then I’ll know I’m ready. (That and having the money to pay for the delivery).
    I read your words, your story, and I find myself empowered. I haven’t walked your path, but I know that the same one who strengthens you, will also uphold me. We still think of your often. Love, prayers and blessings for this next beautiful child.

    • Reply michaelaevanow May 9, 2014 at 12:22 PM

      That is so wonderful to hear…that you feel empowered. It brings me deep joy! Thank you for sharing Bethany. Yes, it’s His peace we rely on. Once we have it, we can do all things through Christ.

  • Reply Adriel Booker May 8, 2014 at 11:00 PM

    Yes, yes, yes! This baby is so blessed to have such faith-filled, brave, gracious, and humble parents! And the world is so blessed to have this sweet baby!

    Praying for your heart and your home every time you spring to mind. x

    • Reply michaelaevanow May 9, 2014 at 2:03 AM

      Adriel, thank you for praying for us. Just thank you. xoxo

  • Reply Sarah May 8, 2014 at 1:12 PM

    Dear Michaela and Jay,

    I have followed another young family’s story for a couple of years now. They are friends of friends and I have prayed for them throughout their journey. They like you are a Mama and Papa of faith and have found love and hope and a purpose in that. Their little boy Corbin went home to Jesus at 118 days old. Also like you his Mama blogged his entire journey. Like darling Florence, Corbin’s life story is an inspiration that continues each day. I think you may find storehouses of faith in their story so I am attaching the link here..http://www.teambabycorbin.com/index.php/celebrating-each-day

  • Reply Jolie May 8, 2014 at 5:15 AM

    You are awesome! Everything and a cherry on top….I’m so deeply thankful for your life, for your giftedness, for your sweet daughter, for your tall husband. Your witness of love, pain, and hope is water to a desert. It is a privilege to know you and a pleasure.
    I hope someday to drink my own kombucha and ogle my own scobie.

    xoxo
    jolie

    • Reply michaelaevanow May 9, 2014 at 2:04 AM

      Jolie, once I’ve given birth and settled in, I will make you drink kombucha and we will make it together! If you haven’t already…:) Love to you. So thankful for you in my life.

  • Reply Brie May 8, 2014 at 4:52 AM

    I’ve been following your blog for sometime and just adore your words. When I saw you were pregnant, I gasped with excitement, for you! Your Flo is so beautiful; I can imagine her smile when she sees her baby brother/sister. Your not caring about the world’s ‘system’ is so boldly refreshing. Can’t wait to see pictures of the new sweet baby! Congratulations!

    • Reply michaelaevanow May 9, 2014 at 2:04 AM

      Hi Brie, wow, what humbling words. Thank you for gasping with excitement with us! It means the world!

  • Reply Nadine Best May 8, 2014 at 4:35 AM

    Congratulations Michaela!!! This is such exciting news and I can’t wait to see pictures of your newest little one. One thing that really stood out to me when reading your blog post was also that you get to see Florence grow into a big sister! This has been one of the things that I have loved the most on my journey into motherhood, watching how my kids change and grow as people learning to love and care for those in their lives and to interact with them. Florence is going to be an amazing big sister and I am so excited you get to enjoy and encourage the process of her growing into one 🙂 Congratulations and blessings on you and your family.
    LOVE LOVE LOVE

    • Reply michaelaevanow May 9, 2014 at 2:06 AM

      Yes, Nadine, yes! We so look forward to the day when Florence becomes a big sister. I can’t believe she’s already two. What a precious gift and miracle it is.

  • Reply Claire De Boer May 7, 2014 at 9:59 PM

    What an absolutely stunning picture of you, Michaela. Simply radiant! You are a source of strength for Flo and your wonderful hubby and all who come into your life. And I am in awe of how you are stepping out and reaching out to God during this pregnancy. All will be well. Love you. xoxox

    • Reply michaelaevanow May 9, 2014 at 2:06 AM

      Love you too Claire. Thanking Jesus for your words of life spoken over us. All will be well. Amen. xo

  • Reply Danielle Langley May 7, 2014 at 9:22 PM

    Michaela your words again gracefully flow from your soul. We are praying for your family still and when I found out you were pregnant I rejoiced. How wonderful. If we didn’t have the “medical knowledge” we do now parents would have more babies. And I think that’s what God would will. More babies more children healthy or sick to bring into his kingdom. Hopefully not so soon but he did say be fruitful and multiply. No “but’s” added. Florence will be so happy to have a little brother and sister. It will bring your whole family such joy! Thankful for the medical staff, drs and personel that have showed happiness for you too

    • Reply michaelaevanow May 9, 2014 at 2:09 AM

      Yes Danielle, I agree. I felt very old fashioned with our approach to this pregnancy. It’s good to be that way, I think. Too much knowledge can drown us in fear. I once read a memoir of a pro-choice and very liberal midwife, and she admitted that amnio and testings can often just add to the burden, and really, we aren’t in control. It was refreshing.

      • Reply Danielle Langley May 15, 2014 at 4:09 PM

        I think I would very much like your “library” ☺️ What is the name of the book:) love getting notifications via email of a new blog post. You encourage me so much!

        • Reply Michaela Evanow May 15, 2014 at 5:36 PM

          Well the book itself wasn’t great, but if you’re looking for an interesting midwifery memoir, Lady’s Hands, Lion’s Heart is better than the above 🙂 Warning, she does work at an abortion clinic and is a bit…shall we say, brash? Or an even better recommendation, one of my fav books is called Birth: The History of how we are born by Tina Cassidy.

  • Reply Rachel May 7, 2014 at 8:16 PM

    Oh my word you are SUCH an amazing writer. How beautiful you describe your real true and raw emotions. I am brought to tears each time I read your blog. My heart reaches out to you and I lift prayers as often as I think of you and your little ones ! I hope you continue to enjoy the movements of baby E in your growing belly and know that our great God is glorified abundantly through your faith, your life, and this blog ! You give Him the glory over and over again and it is a beautiful thing. Xxo sister in Christ – Rachel

    • Reply michaelaevanow May 9, 2014 at 2:10 AM

      oh Rachel, what magnificent words. They are so precious and humbling to me. Thank you for sharing this with me! And thank you for being a sister in Christ. xo

  • Reply Biggi May 7, 2014 at 7:21 PM

    I adore your boldness and your strength. It makes me feel super calm, laying in bed nauseated with my own little miracle baby in my womb. All the fears I have and had calm with the thought you share: all disappears in the presence of our wonderful and loving father in heaven.
    He asked me a few weeks into my pregnancy if I could trust him with this little life as I trust him with my own. This has challenged me to the core. As I was fighting for this little life on bed rest b/c of bleedings.

    Michaela, your story is so encouraging. I really love reading your thoughts, fears and the trust in God you have. It hopefully will give strength and strengthens faith in many more.

    Your faith is the strength that will continue to get you and your family through every storm life wants to throw at you! Keep seeking him!
    You’re wonderful and I look up to you! You’re a great example for many of us. Keep walk that walk!

    Many prayers with you and your fam! Much love from Germany! Xox

    • Reply michaelaevanow May 9, 2014 at 2:13 AM

      Oh dearest Biggi, thank you! I appreciate your words of life and love over me. I’m so blessed to hear how my little words can bring calm to you and your heart. What an enormous blessing and honour. Thank you for sharing part of your pregnancy journey with me too. Be at peace, in all things. I always sing “it is well with my soul” even when it feels like it’s not, in times of bending and breaking. But it’s the truth, it is well, and nothing can shake His love and covering from us. Much love to you. xo

      • Reply Biggi May 8, 2014 at 10:11 PM

        Thank you dear Michaela. That song actually is a great reminder. I should start that. Even in times of exhaustion and nausea I should train my heart to rejoice and not to pity itself… Thank you for that. I need to learn that!
        Even though I am super excited and grateful to be allowed to carry this little life I am not thankful enough in these harder times. Thank you so much for sharing that. Seriously encouraging. Your positive way of looking at life through the loving lense of the father is truly inspiring Michaela! I want to learn that more from you.

        Much love and blessings. Your enriching to our lives and a true picture of the love of Christ. Keep on walking the way like this. Xox

        • Reply michaelaevanow May 9, 2014 at 12:20 PM

          Bethel Music does a version of that song that is my anthem! Here’s a link to the song.

          It’s okay to feel like you aren’t thankful enough in the midst. Pregnancy is REALLY hard sometimes. It’s a death to oneself. But once you come through it, you will see how far you’ve come by His grace!

          • Biggi May 9, 2014 at 10:59 PM

            Michaela you don’t even know how much you bless me. Thank you for that link! Bethel music is one of the few favorites I have.
            Thank you for your encouragement. You are wonderful and encouraging. May you be blessed beyond understanding and let flo love you this morning with her dear hands on your cheek. You’re a blessed woman after proverbs 31 for sure. You’re encouraging and a blessing to so many. Thank you for giving your time to share with the others around the world. Much love to you

  • Reply Laura Luyt May 7, 2014 at 5:16 PM

    GOOD FOR YOU.
    Just happened upon your blog and am SO EXCITED for you to be welcoming a new life into the world. God is SO GOOD. so good.
    God will never leave you nor forsake you!
    Tears of joy as I speed-read through these words from your mama-heart.
    Blessings and peace this joy-filled day…”keep my eyes above the waves, when oceans rise.”
    Do you know that song? Oceans – Hillsong.
    God. is. good.
    Big love to you. xoxo

    • Reply michaelaevanow May 7, 2014 at 6:25 PM

      Hi Laura, yes I love that song! Thanks for stopping by!! So glad you did. Your words are so lovely to me.

  • Reply Stephanie May 7, 2014 at 4:41 PM

    I have read your blog for awhile. I had Morag as my birth photographer too and thats how I came across your site. I too have a child with a genetic medical condition and so we were given the 25% odds when we chose to have our second child. I can so relate to the “Are you going to test for it” questions. We also chose to just let it be and not do any testing, because no matter the answer we were having our child and were prepared to deal with the outcome. Our second child was born without the medical condition.

    I just want to say you are such an inspiring person and you seem like such a wonderful mother. Flo is sure lucky that you were picked for her. I wish your family all the best and as hard as it can be to imagine, the ODDS are in your favour that everything will be ok.

    • Reply michaelaevanow May 7, 2014 at 6:27 PM

      Oh hello Stephanie! Thank you for commenting. Isn’t Morag the best? We are having her at our birth again 🙂 Thank you so so much for sharing your story. You too are a brave mama. I LOVE hearing stories like this (you’d be surprised how often people share the other stories—not while I’m pregnant people!) I love this. I love that the odds are in our favour. I’m so thrilled that you have such a beautiful family, and that you chose to hope too. Much love to you mama.

  • Reply Courtney May 7, 2014 at 3:48 PM

    You get to make the rules for your family and whatever brings you peace. There will always be naysayers. Your faith and honesty are an inspiration and challenge to me. Blessings to you on this new and exciting journey.

    • Reply michaelaevanow May 7, 2014 at 6:28 PM

      Yes, that’s true. Sometimes easier said than done…but also sometimes it’s easier to just do it too. xo

  • Reply michaelaevanow May 7, 2014 at 3:47 PM

    Thank you Donna-Jean. I recognize you from your emails and SheLoves comments (right?) 🙂 These words are like a balm to my heart. Thank you for writing. It really does mean so very much to me! xo

    • Reply Donna-Jean Brown May 7, 2014 at 5:48 PM

      Yes, that’s where you’ve seen my name.

  • Reply Donna-Jean Brown May 7, 2014 at 3:31 PM

    Oh Michaela, if anyone can do this, you can. I don’t know you personally, but no matter what you may do in private (crying, cursing, throwing things?), anyone who has the faith and hope to keep writing and sharing such an intimate, painful story of praise is BRAVE, BRAVE, BRAVE. How wonderful that you know the God of the impossible who will continue to be your Rock whether it feels like it or not. Love from Toronto to you and your dear husband (and little Florence, of course).

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