the worst day of my life: motherhood and fear.

July 10, 2012, Michaela Evanow, 26 Comments

I heard words, but my brain couldn’t register them.I had seen this happen in countless movies, when everything goes quiet and there’s a far off ringing in the ears…but here it was happening to me. Unknown tears were streaming down my face, as I asked the paediatric neurologist to repeat herself. She looked at me, with this remarkable look on her face, like she’s never had to repeat anything before. I wanted to scream at her, PLEASE JUST REPEAT YOUR SELF, you bearer of bad news, you scientist with no bed side manner, you wiry old woman with no ounce of tact. I kept those angry words to myself.

She repeated herself, telling me where to go for blood tests, where to take the papers to book an appointment for an EEG and other tests I wasn’t prepared for. This is just what they do, right? They do this to babies, because they are scared, they want answers, they want a diagnosis.

The walls were such a bland, boring beige. The chairs, a neutral green blue, so pathetic looking, they may as well be colourless. Isn’t this a Children’s Hospital? Aren’t things supposed to be bright and cheery?

My angel baby, let me rephrase that, my tiny, little four month old baby, has something wrong with her? She has something wrong with her muscles? Or her nerves? You’re not sure, but you want to test for spinal muscular atrohpy and all these other diseases, you want to hook her up to a machine. you want to draw blood from her again? I am so confused. No one even saw this coming, until I pointed it out. Oh God, why did I point it out?!

This isn’t happening, this isn’t happening, this isn’t happening.

No. No. No. No. God, no.

The trauma of the last week is slowly fading away, but the raw, helpless feeling that took over my mother heart lingers like a bad dream.

I was not prepared to meet such a numb doctor. She wasn’t a healer, but a scientist. She works with brain injured children, I understand that, I can’t imagine what she sees on a daily basis. I am not brain injured, and your words are having a powerful affect on me. I’m drowning in them. I would drink down numbness if I could, but I’m feeling this.

I screamed and sobbed the whole car ride home. Thankfully Florence was with her papa in another car. I wailed at the top of my lungs. I pulled over and Googled “spinal muscular atrophy” and completely lost my mind. I wanted to roll over and die. I wanted to start over. I wanted to claw my face off in rage and terror.

It was not my finest moment. Never have I ever had my heart broken so fiercely. I felt physically ill, couldn’t eat dinner, couldn’t eat much the whole next day. I spent the day in bed, sleeping, tossing and turning, holed away in our cool, dark bedroom where I had spent so many months doing the same thing, when I was pregnant with Florence. I felt the same sickness wash over me, and yet this time I felt pregnant with sorrow.

The doctor didn’t say much but “your baby has weak arms and legs. There is something wrong, I just don’t know what. She has to go through testing, and it could take weeks or months. I don’t think physio will help, I don’t think she will grow out of it. I’m sorry.”

I asked her what the best case scenario was, hoping to save a shred of my dignity, after erupting into terrified sobs. I sputtered out the words, “It’s possible nothing is wrong, right?”

I hope so, she said. But the worse case is that something is seriously wrong. Something like spinal muscular atrophy. She told me to not get pregnant until we figured it out. She told me I could pass it on to my other children. She told me it’s rare, but we could be gene carriers and not know it. She told me the worst and I hated her for it. But I’m forgiving her. Doctors do that, I suppose, prepare you for the worst to cover their butts. Perhaps she likes the feeling of breaking the good news that nothing is wrong after all.

I’ll be honest, everything went through my head that night. Jay and I wouldn’t make it through this, because all our children would be affected by spinal muscular atrophy and die in 2 years. We would get a divorce. I would watch my baby girl lose her life, battling this atrophy, eventually succumbing to the disease. They were brief thoughts, but they tore me apart.

I no longer feel that way but I still feel some terror. I have prayed and cried my heart out. I trust my Father God, I trust that His heart is full like mine is, and that He knew what was coming our way. I know it will be a journey of faith. I know I will struggle and have good days and bad days. I’m getting over the grief, the “why me” syndrome that can cripple me if I let it. I’ve been down that road before, and after years and years, realized that “why me?” is toxic. I’m visiting my old nightmare, in the same hospital.

The neurologist said nothing is wrong with her brain, and I know that. She is bright, healthy and thriving. She is growing, she is chubby, she is developing. She has some weakness, and I understand that she may not reach her milestones “on time.” But I just can’t believe that her hypotonic muscles are a symptom of something else.

There are good days and bad days in motherhood, this I know full well.

“But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.”

Isaiah 40:31

26 Comments

  • Reply a year of life: reflecting on hope and letting go of pain. | March 11, 2013 at 12:24 PM

    […] about 4 months she was diagnosed with Spinal Muscular Atrophy type […]

  • Reply Inger Hagen July 12, 2012 at 10:49 PM

    Michaela, I don’t know you, but I know your parents and heard the story from your father today. I have read your capture of what must be a horrendous time in your life as a parent. Your story also takes me back 38 years in time when my oldest daughter was born. As I heard your father tell the story and why you had gone to see a doctor in the first place, my mind went “this is Kjetil, this is Kjetil”. My sister in law gave birth to a healthy boy three months ahead of me when I gave birth to my daughter. The two cousins met regularly and as parents we tend to compare. Not only the good looks of our babies, cause they are the best, aren’t they, – but also their development. My daughter was already as a 4-5 month old a much more active and agile baby than her cousin Kjetil who was three months ahead in age, and therefore also in development we thought. But holding him in my arms, I even today remember how limp he felt and I even had to support his head at the age of 4-5 months. My daughter could sit up by herself, but Kjetil fell down if no support. She was reaching for things and waiving her arms and legs, while he hardly moved. My sister-in-law was a nurse and I thought she surely would suspect that something was not right. But no, “he’s such a slow boy, isn’t he” was always her comment.
    Well, time went on, and my sister-in-law was right. He was just a slow boy and by the time he was a toddler he was still not as active as my daughter, but that is 38 years ago. Today he is a very healthy man, tall, robust and very active and he is a father of two healthy boys.
    So hang in there Michaela. You are terrified, but the results of all the tests may not be the “worst case scenario” that you now see your family and baby faced with. Once you have a diagnosis, and whatever treatment/theraphy your daughter may be faced with, she is in the best hands at the Childrens’ Hospital, I am sure you will experience that when the first shock has subsided a bit. Thinking about you and praying that everything will turn out well for your baby and your family.

    • Reply Michaela. July 13, 2012 at 1:15 PM

      Wow, Inger, thank you SO much for your comment and story. It really, really appreciate that. Did Kjetil ever have a “diagnosis” of hypotonia or did he just “outgrow” it? There are varying degrees of it and different muscle groups that can be affected. We are hopeful that Florence has a mild case, and thankfully it’s not affecting her weight gain or feeding or breathing or anything like that. A lot of hypotonic babies can have that. Thanks again for sharing!

  • Reply elina July 12, 2012 at 10:02 PM

    Michaela, I first saw your birth photos on Facebook, and now I suddenly discovered your blog. And wow, what you’re going through… I will keep you and your little one in my prayers. Hopefully everything will turn out well (and I’m sure it will – God is good).

    • Reply Michaela. July 13, 2012 at 1:12 PM

      Elina, thank you so much for visiting! I appreciate the prayers!

      • Reply elina July 13, 2012 at 8:07 PM

        Of course. 🙂 I’m a fellow mama (and a Vancouver mama as well), and I can only imagine what the day you describe must have been like.

  • Reply gerg's July 11, 2012 at 6:31 PM

    Chiropractic? Did she rule out Torticullis? That’s often a simple chiro visit. Just a thought.
    Joseph Prince books &/or sermons for Truth?
    Communion daily & thensome until she & you & Jason are healed?
    Letting yourself believe the best. God is the final say -er. By His stripes we [Florence] is healed. Bold & italic “is,” since it is present tense & bears no prerequisite – not even salvation.
    Prayers. They’re going up & being heard & answered with many “yes’ & amens.” Amen.
    Peace to you, Love. Peace to you in the precious name of Jesus. Amen.

    • Reply Michaela. July 11, 2012 at 7:39 PM

      thanks Laurie. Yeah we’re pretty sure it’s not torticullis, but we have a chiropractor we’re going to work more with!

  • Reply Tania July 10, 2012 at 11:29 PM

    Oh the heart of a mother! I know beyond a shadow of a doubt that we can and must storm heaven for our daughters- I am so touched by your writing and your vulnerability. I too, face a daily uncertainty with my precious girl, but for very different reasons and I am learning, as you, that there are days that are light in heart and days that are so heavy- I mourn for you having to face this so soon but know that your deep faith will carry you. Sending love and empathy and prayers and a strong belief that “all things work for good…”

    • Reply Michaela. July 11, 2012 at 9:32 AM

      Thank you Tania. I appreciate that.

  • Reply The Laundry Lady July 10, 2012 at 5:44 PM

    Sometimes I read your words and I feel the pain like it is my own even though we are strangers. Know that I’m praying for you, your husband and your daughter. First and foremost, I will pray for clear test results, good prognosis and ultimately the healing hand of God to be upon her. I will also pray for your marriage. I remember when we lost our baby at 10 weeks gestation that even more than losing my child, I was afraid our marriage wouldn’t survive. Our did. Yours will too, no matter the prognosis. You are both strong people who have faced difficult challenges before and you are not alone in this. Take care of your daughter, yes, but also care for your marriage in all of this. That will ultimately help her too. Do everything you can to keep the enemy from stealing the joy your daughter has brought into your life. Until the results are in front or you, try not to let terror rule your life (I know from first hand experience this is easier said than done) and even then, cling to the truth of God’s goodness and his good and perfect plans for your daughter’s life, even in the face of seemingly negative facts. You are in my thoughts and prayers.

    • Reply Michaela. July 10, 2012 at 7:14 PM

      Laundry Lady (what’s your real name?!) thank you for your love. Your words are always SO encouraging to me. I appreciate you even though we’ve never met.

      • Reply The Laundry Lady July 11, 2012 at 2:58 AM

        Michaela, I’m Bethany. I’ve appreciated your insights as well and continue to hold you and your family up in prayer.

  • Reply Kales July 10, 2012 at 5:40 PM

    Oh Michaela! We’re praying for you, Jay and Flo! Mic, I love your heart. It’s so full and alive with radiance. Stand firm on the truth and all the wise words that are written in these notes above. Cling to what you know, cling to Him who keeps His promise. Love always protects, hopes and perseveres. You will do the same. So will your tender heavenly Father.
    We love you and think of you often, sorry we missed each other this weekend. xoxo.

    • Reply Michaela. July 10, 2012 at 7:12 PM

      So lovely to hear from you Kalie! Thank you. Missed seeing you too.

  • Reply motherwho July 10, 2012 at 5:16 PM

    Thinking of you and your family Michaela. It sounds like the doctor has lost some sort of connection with the real people she is working with each and every day, and it’s a shame that you didn’t get to talk to someone with some more understanding. Wishing you all the best and lots of strength for this challenge you have met. mw x

    • Reply Michaela. July 10, 2012 at 7:11 PM

      Motherwho, it’s good to hear that (about the Dr.) sometimes a mama can think she’s going crazy, but I’ve heard similar stories about doctor’s mismanagement. Thanks for your kind words.

  • Reply Maripat Rawson July 10, 2012 at 3:01 PM

    Michaela and Jay,
    It’s Maripat here.
    I want to tell you a story.
    When you were a girl older than a baby and younger than a woman, a challenge came to you and to your family. Your spine was crooked. I remember it well. Days of doctor visits, prayer mingled with worry and pain surrounded the recommendation of surgery.
    Nobody wanted to go through the series of events that would define this spine straitening event. Particularly your Daddy. He couldn’t accept that his darling child would experience so great a trial.
    Everyone fell onto the knees inside their heart.
    Your mom prayed as only a mom can pray.
    Your dad prayed – in faith, in belief, in agony.
    Your aunts and uncles and friends and church leaders and distant but sturdy friends prayed.
    We cried.
    We talked.
    And you had surgery.
    And you did very well.
    And so did God and your folks and relatives and friends.
    What at first devastated everyone in the end brought great praise and peace into your life.

    “I will never leave you nor forsake you, no not ever.” Hebrews 13:5
    Believe Him…it’s true.
    Give Flo a big smooch and whisper the word of the Lord into her ear. ‘Nothing is too difficult for God.’

    • Reply Michaela. July 10, 2012 at 6:55 PM

      Wow, Maripat thank you. I’m without words.

  • Reply Telsey July 10, 2012 at 2:51 PM

    Caleb and I are praying, standing and believing with you for complete health and strength for your precious Florence. Our God is good… No matter what waves of emotions come and go stand on the fact and truth that your Father is always good. May you feel His embrace during this “waiting” period. You’re such an amazing mother Michaela. Hugs!!

  • Reply NannyLou July 10, 2012 at 12:51 PM

    From my place of grandmother, such fear knots my stomach, shortens my breathe and tears at my heart. What I know for sure is that the Lord in His goodness will hear our prayer for you all. I know your mommy is suffering right along with you – women feel things in a different way, ‘specially women of the same line. Stand tall and reach up to He who can heal and who loves us the best. and know that a “specialist” title and an “MD” in this day and age means tests with machines that plug into a wall – trust yourself, your instincts, and your mother (not necessarily in that order). Take your time Michaela – don’t let them rush you even if they have to repeat the same thing 3 times – carry a voice activated tape recorder at this point so it’s not you repeating the instructions to others as said to you, but “right from the horses mouth” – that way, you can absorb in your own time. It’s hard to hear some times when emotions are running crazy. Your Marigold has a history of strong women in her dna – trust that, stay positive and just love on all that beauty you hold in your arms. This too, shall pass. I wrap my prayers and my arms around you all. Nanny

    • Reply Michaela. July 10, 2012 at 12:52 PM

      thanks for your wise words!

  • Reply Mrs Loquacious July 10, 2012 at 12:23 PM

    My mommy heart breaks alongside yours, and though there isn’t much more I can do to help, I will continue to intercede on your behalf before the throne of grace. May your fears be banished and may faith abound, filling up all the cracks and crevices of your worried momma heart. May this story (of someone related to someone I know) be of encouragement to you: http://www.mywesttexas.com/top_stories/article_8182994f-5ec4-53a8-939a-02b17f5d5778.html#.T92fxF8IV74.facebook

  • Reply Michelle Buck July 10, 2012 at 11:57 AM

    oh Michaela! My thoughts and prayers are with you and I’m believing in Jesus name this will all be a distant memory very soon. I hope you take comfort in Him who created you and created beautiful baby Florence, no matter what any ‘scientist’ has to say about her, she a perfect little girl created in his image and she is such a blessing to you and Jay. How special that the Lord chose you for her 🙂 Perish the thoughts of the demise of your marriage or otherwise, when we are weak He is strong. I hope you know you are surrounded and being lifted up by a LARGE community of believers in your family and otherwise. We love you guys and are here for you. Hugs, Michelle

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