when you are afraid: on genetic testing and muscle memory

November 6, 2014, Michaela Evanow, 17 Comments

It’s been over 10 weeks since Theodore came into this world. Ten crazy, lovely and hard weeks.

At eight weeks, I wrote this: 

In the days following his birth I was an emotional wreck, like most mothers. The postpartum hormonal cocktail did a number on me. Coupled with a dash of grief and the realization that I had another baby to love made me a little woozy. A little terrified.

You see, when your first child is diagnosed with a deadly disease, all you know is grief and fear when it comes to mothering. When someone says, Don’t worry, I have to acknowledge that all I know is worry. And that’s okay. My motherhood journey so far has been full of it. I had two blissful, worry free months when Florence was a newborn, and then it all crashed. My muscle memory is caught up in the ugly and the hard, so it keeps going to that place.

A twitch in his legs as he falls asleep. Is that a seizure? Can he see me? Isn’t he supposed to look at me by now? Is he blind?

You might laugh, but I had to sit on the couch and try my hardest not to Google. It was a deep, dark temptation. And I often caved. I realized it wasn’t even about SMA anymore. It was about plain, ol’ fear.

I don’t spend every day worrying, but I do taste it and feel it a heck of a lot more than a mother of a healthy child.

I feel the stab of anxiety right in my heart. Palpations. Thick and heavy with dread. I have been comparing him to every newborn I meet. I have had wonderful weeks, and I glow when people remark on his strength. But then he twitches his leg in his sleep, I feel so close to vomiting up my heart, I have to put my head between my legs and breathe. Florence had leg shudders, trembles when she would cry, at about 4 weeks of age. Her sweet little leg muscles were dying. So, when Theodore is breastfeeding and his little leg gives a quick twitch or two, I feel it all. Panic. Grief. Fear. I don’t know what’s normal! I don’t know what to think!

This is motherhood to me right now. It is not pretty, and yes, it’s probably sad to you. But it’s my right now, my present.

I took him to the hospital and got his blood taken for the genetic testing when he was about three weeks old. I wrapped him up against my chest and braved the pathology lab at the children’s hospital. I had flashbacks to when Florence was tested at 3 months. I cried into his milky neck folds until he was wet and he was purple and livid from the blood draw. But I did it. It was done. Two weeks later I got a phone call from the doctor. The blood had not been sent for testing yet. There were a few things I needed to know. Did you know full blown SMA can show up in blood work, but the child doesn’t show symptoms of the disease? Nope, I didn’t know. Did you know this can mess up life insurance? What? No. I didn’t know! Also, is he symptomatic? Because we don’t really run these tests unless there is a reason…

This threw me way off track. I didn’t understand why this was all coming up, when mothers get prenatal testing all the time, in fact, it feels like the preferable route sometimes for care providers. Aren’t these issues also applicable to prenatal testing? Why isn’t there a time limit now? Just because I don’t have the “option” anymore to abort, doesn’t mean I don’t need to know in a timely matter!

I felt very angry, confused, and frankly, not ready to run the test again. Every time the phone rang and I saw it was from the hospital (for Florence), I would break out into a cold sweat. I was and still am very afraid of receiving the test results. I just want there to be a giant NO in red, flashing lights one day. I want it to catch me off guard. I want to know and be done with it, and close this chapter in Theodore’s life.

I called the doctor back a month or so later and told him to run it.

But it was not easy.

In fact, I got off the phone with the secretary and cried my eyes out. I told God, I am so afraid right now. I’m terrified. I’m scared. You have got to help me with this.

And He has. I read this post by Sarah Bessey shortly after.

The days are a bit long when you’re waiting without assurance.  I think I used to confuse faith with my longing for control, particularly of outcomes. Even now, it’s a lame sort of faith, mine, the kind that waits for a sign before taking the risk. 

Oh boy, did I wait for signs during my pregnancy with Theodore. I wanted to know. Without a doubt. But I had doubts in my pregnancy. I doubted my decision to not run the prenatal diagnostic testingAnd so, fear and I were good friends for many weeks.

Even after his birth, when I knew I could have the results, I couldn’t muster enough courage to run the test “again”. It was a curveball that I could barely pick up again. I grabbed my phone multiple times and punched in the number for the doctor’s office. And then I hung up. There was no way I could get the words out. Run the test. Run the test. Run the damn test.

This became my mantra for weeks, and it took weeks to finally follow through. After reading Sarah’s post, and talking to another mama whose first child had a medical issue, I finally found the courage to say: I’m afraid, and that’s okay.

I’d like to run the test.

My hands shook, it hurt, and yet I felt a deep release. It was like giving birth all over again.

It took 9 months and 8 weeks to come to the decision to run the genetic test.


Now, at 10 weeks, I am feeling a lot different. I’ve scrubbed off lots of fear and trembling and instead ingested peace. I’ve been swallowing it whole. I’m so thankful for those that pray, because without that support I might still be teetering on the edge. 

I took Theodore to the pediatrician yesterday. He informed me that the testing is run in batches, and it won’t be run for another few weeks yet. So, we’re probably going to receive the results in January.

However. He examined my son yesterday. He took that rubber mallet and bonked his knees. And I saw his reflexes, which Florence never had. I saw them all, in every limb. I saw his legs kicking so hard that the doctor couldn’t properly measure his height. I saw him lifting his head while on his tummy, bearing weight on his legs. I saw things I’ve never seen Florence do. No trace of hypotonia. No trace of SMA. I saw all the things I’ve been seeing all along.

He looks great. He looks completely normal. I think he’s going to be just fine.

Sometimes things don’t turn out the way we want. You’d think I’d know this by now. I wanted easy. I thought I deserved it. And even though everything looks good with Theodore, I’m still chilling that bottle of champagne in the wine fridge, for that celebratory day when we receive the all clear. But, there was and is still some chaff that needs singeing, eyes that need opening.

I saw my trauma and fear as a part of me. And though I acknowledge their place in my life right now, I don’t want them leading and guiding me.

Jay brought home champagne glasses the other day. I washed them free from dust and fingerprints and slid them into their place in the cupboard. I can’t wait to fill them, brim full, bubbling over.

Selah.

17 Comments

  • Reply Jocelyn Lord August 26, 2015 at 1:28 PM

    I have been reading bits and pieces of your blog for a couple days now and I have been surprised at the depth of emotion I have felt reading your story. I saw a link on my face book page for your mama jems (which are super cool) and since then I have been drawn into the rabbit hole of your blog. Thank you for sharing your heart, your sorrows, your inspiration. I know that you must be an encouragement for so many other mammas that are struggling out in the world. I can’t help but wish that you lived nearby because I feel as though you are a kindred spirit. I am also a “semi -crunchy” mamma (loved how you phrased that), a birth doula, momma to three kiddos, birth junkie, blogger and most of all Jesus lover too! – Jocelyn

  • Reply Food For Thought - Family Synapse December 14, 2014 at 3:47 PM

    […] When You are Afraid – On Genetic Testing and Muscle Memory – Michaela Evanow […]

  • Reply Food For Thought | Team Aidan November 17, 2014 at 3:33 AM

    […] When You are Afraid – On Genetic Testing and Muscle Memory – Michaela Evanow […]

  • Reply Neesie November 11, 2014 at 12:50 PM

    I can’t know your experience and pain with SMA, but I my 14 year old son was diagnosed with Crohns at age 8 and fear is my constant companion. Your writing truly blesses me in that I feel the expression of God’s truth through your words, as well as a sense of not being alone in my experience of mothering. My boy has to have a small procedure tomorrow and I so relate to the ‘muscle memory’. It is as though my brain and body are so traumatised by those terrible days of waiting for results and enduring the testing. that I fall right back into those feelings of dread and panic. I am so tired of my identity being tied up in my fear. I am in the uneasy space of allowing it room in my life without surrendering to it. But so far, I am really battling. Your family is so beautiful and I so appreciate your truthful words. I am going to follow the link to read Sarah’s post. Thinking of you and praying for your family.

  • Reply Katie November 7, 2014 at 9:25 AM

    Michaela, I follow your posts, never with dry eyes, and think of when you, Chelsi and I took little Jude to his wind up pre-natal group. At that time, you were so looking forward to being a mom. Now, with two beautiful babies, what a mom you are. I can’t imagine what it must be like for you day to day. My heart is with you and I pray for the day when you and hubby open that champagne.

  • Reply Heather Bowie November 7, 2014 at 7:05 AM

    Oh this is so beautiful. Even though I had my NT child first, whenever I witness something strange in Aidan, I wonder if it’s exactly nothing or something – a big something. Also, the waiting, oh the waiting.

    Thank you for continuing to share your story and oh my, is that picture ever precious!

    Heather

    • Reply Michaela Evanow November 7, 2014 at 9:49 PM

      Thanks Heather, for understanding. 🙂 The waiting. Yes.
      Ugh. xo

  • Reply Anna November 7, 2014 at 6:31 AM

    Oh my goodness, they are adorable. He looks so much like her! <3

    Your words always inspire me and bring me back, but it's the pictures that take my breath away.

    • Reply Michaela Evanow November 7, 2014 at 9:38 PM

      Thanks Anna. I think they are adorable too 🙂

  • Reply Hannah Corson November 6, 2014 at 2:51 PM

    So glad I finally found your blog 🙂 I’ve enjoyed following you on Instagram and now I get to know more of your story. Thanks for sharing your fears and being authentic.

    • Reply Michaela Evanow November 6, 2014 at 5:05 PM

      Hi Hannah! Nice to hear from you on here 🙂

  • Reply Nicole November 6, 2014 at 1:38 PM

    This is beautiful. My 2nd child has SMA. She also never bore weight in her legs, kicked them strongly, or lifted her head much a tummy time. She was stronger than other SMA’s so wasn’t diagnosed till 8 months with Type 1. Theo’s abilities sound promising. He sounds just like my first child who is healthy and SMA free. Hang in there. You and your husband have been so incredibly brave. A bravery not many can understand. It’s truly incredibly admirable what you two have done. Much love and praying those champagne glasses will rise and clink with the happiest and fullest of hearts. Thank you for sharing.

    • Reply Michaela Evanow November 7, 2014 at 9:45 PM

      Oh thank you Nicole. It’s really nice to hear those things about your first daughter. Thanks for that reassurance and confidence. Sweet Finley, she is a such a dolly. I hope she’s doing well.

  • Reply Vangel November 6, 2014 at 12:59 PM

    ***tears****
    Believing and praying with you, Micheala – and dreaming of the champagne…bubbling over and the look of joy upon your face…

    • Reply Michaela Evanow November 7, 2014 at 9:39 PM

      Thanks Vangel, for all your support and faith and love for us. xo

  • Reply Bethany V. November 6, 2014 at 12:07 PM

    So I hate to compare one mother’s struggle with another. But this speaks to me. It speaks to me because I want so much to have another child, but I also battle with the fear. Most days I don’t think about it, but late at night it comes to me. What if I have another miscarriage? What if we can’t have another baby? What if I get diabetes again, and there are complications? The list goes on. But at the same time I want this child. We’re waiting on some insurance details before officially decided to try for another baby, but part of me really doesn’t want to wait. Because once I’m pregnant I’ll have to deal with it, live with the reality and cope with the results. Right now I’m just hovering between one fear and another. I know that whatever comes, somehow I’ll manage by God’s grace. But yeah, I’m afraid. Part of me says I have no reason to be, no right to be. I haven’t had to walk the path of pain you have. Yet it’s still there. I pray for peace, cling to joy and look forward in hope.
    As always, blessings to you and your whole, blessed, growing little family.

    • Reply Michaela Evanow November 7, 2014 at 9:43 PM

      It’s such a complicated time, the season before getting pregnant. For me, once I was actually pregnant, it wasn’t so bad. Leading up to it….it was tough. And then halfway through the pregnancy. I think it comes in waves. And I think it’s okay to not be fully settled. To struggle. I’ve had a lot of growth, even though it’s been unwanted growth (ha!), in this season, and I know it’s all for good. I hope you find calm in His embrace. That’s the only place to dwell in these seasons of uncertainty, isn’t it?

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