this is motherhood {too}: the art of letting go: SMA 1 and grief

February 28, 2014, This is Motherhood Too, 10 Comments


The dance. The most archaic and beautiful dance laden with heartache began with my denial. Denial fuelled by millions of Google searches. The dizzying thoughts spun through my head, faster and faster – this is impossible, not my daughter. The doctors were wrong, they had to be. They had to be because I couldn’t possibly digest the word “terminal” in any correlation with my baby girl.

My denial kept me going. My denial kept me searching for answers, distracting me and forcing me to get up every single morning and take care of my children instead of crawling into a deep dark hole. It was my drug and I had to have it—living without it was too intense, too exposed. My denial ended with a phone call, at work of all places. Dr. Jiang called. It was my worst fear. It was SMA. It was real. It was terrible. It was in that moment that the catastrophic meteor of diagnosis hit; the moment when my heart sunk into my stomach and I began to digest the bitter word “terminal”.  I continued on the phone, holding it together momentarily while I set up genetic counseling appointments for the following Wednesday, holding back the sobs and nausea. I hung up the phone, defeated by a single missing gene.

I left work, a client processing in my chair, tears streaming down my face, dry heaving, head spinning, hyperventilating. I couldn’t stay at work like that and I couldn’t drive anywhere, but I absolutely couldn’t be there. I couldn’t see or think or move or much of anything but scream silent screams while I gasped for air.  I was driven to my friend’s house which was a mile down the road where I slumped in a couch, unable to do anything but rock and cry until my husband finally got there, February 9, 2013. I can still feel that day resonating in my body. I will feel it for the rest of my existence.

Then I saw her. Really saw her for the first time that very same day. She wasn’t different. She was smiling and blowing spit bubbles. I looked at her face and I swear I saw relief – not mine, but hers. She had a look on her face like “See, I have been trying to tell you my secret”. She moved her big eyebrows up and down and I began to shake a little of the denial. I stopped lying to myself and watched her chest rise and fall. Rise and fall. Rise and fall – fast. I watched her belly with my astonished eyes. I watched her arms, wrists turned backwards. I watched her favor the left side. I listened to her voice. It was meek and quiet but with so much to say. I listened to her breathing. I felt her limp in my arms. I felt her head try to balance, not lift, but balance. Nothing about her was different but everything was real. I woke up that day inside my own head. I woke up.

I woke up and I was angry. Furious. I felt as though my own body had lied to me. Like it was harbouring this devious secret mixed in with my own genes, lying in wait to betray me. I was stabbed in the heart with my own DNA. Then the questions came: Why wasn’t I affected? I would have taken this burden off of my sweet baby girl without even thinking. Thoughts of my first born son filled my head. Is he going to be okay? Is he too, a ticking time bomb? Is his genetic make-up going to sabotage him as well? I couldn’t bear to think of it. I already had so much fear and doubt and guilt boiling below my skin, aching to get out. I longed for normalcy, in any sense. I wanted to be tired and angry because my children were driving me insane with potty training and tantrums, not sleepless because of treatments and begging for mere ounces to be consumed.

SMA type 1

Begging and bargaining and robbing Peter to pay Paul, I would sit and think, “If only it were type 2. Yes, type 2 is so much better. Maybe I can make her be a type 2. I will just build her muscles up; yes that is what I will do.” And so I did. I worked with her constantly, everyone did. If you were with her, you were moving her. I was trying to will her into something impossible, something to make this all go away. Something to give her back her life. All the while, draining her energy and accelerating her decline. The cruelty of this disease is on the inside where no one can see. I cannot strengthen lungs or hearts or digestive tracts. I cannot fix this. I cannot win. But then again, I was learning to really see her. She wasn’t wishing she was something different. She never stopped smiling. She worked hard and then harder and cried and stretched and never gave up. Her spirit shined each and every day, illuminating my small house and each of our lives. Each and every day through my tears and tantrums and begging for miracles, she was my rock – steady and determined. I wanted to sing her praises. Her name is Lana, my daughter, my light.

We lost Lana April 11, 2013. She was six months old. It was the dead of night. She was done fighting, and we were ready to let her go. Bright florescent lights flickered in the hallway of the PICU at Children’s Hospital of Michigan where I made phone calls, hands shaking and heart fluttering, sick down to my soul. I held her to the end, praising for her strength and beauty and bravery. I held her to the end, rocking her through a thunder storm, lightening crashing and pouring rain. And she left. My baby girl was free while I was shackled to the Earth, left to navigate this thing we call loss – a monster that few understand and even fewer are willing to talk about. I will miss her every day until I see her again.

I struggle each day, in and out. Some days I am better. Some days I am a better mother to my son, but there are still days that I surrender to my depression and have to claw my way out. It is on these days, that I have turned to writing. I feel as though it helps to scrape these things out of my heart and onto paper. It cleanses. It heals.

I sit here, eight months later and it all feels like a dream. I know I had her, I know I lost her, but it is so foreign to me. I am whip-lashed, shell-shocked, beat-up, and broke-down and yet, still here. Still walking. Still talking. Still breathing. Still existing. Still a mother to a child that no one can hold. Still a mother to a child that no one can forget.

But, I will fight until I see her beautiful face in front of mine once more. Smell her hair and see her smile. I will pick her up one more time and this time, I will never, ever let go.

This is from the collective writing project: this is motherhood {too}. Do you have a story you’d like to submit?


  • Reply Appakunhi July 31, 2014 at 6:22 AM

    I much prefer iniftmarove articles like this to that high brow literature.

  • Reply Beverley Nash March 15, 2014 at 11:26 AM

    I wept reading your post! Feel it on such a deep level! I pray that you will be comforted by Holy Spirit. Jesus as despised and rejected and forsaken by men, a Man of sorrows, and pains and acquainted with grief and sickness;and like One from Whom men hide their faces He was despise and we did not appreciate His worth or have any esteem for Him. “Surely He has borne our griefs………sicknesses, weaknesses, and distresses and carried our sorrows….. And pains (of punishment), yet we ignorantly considered Him stricken, smitten, and afflicted by God as if with leprosy. But He was wounded for our transgressions, he was bruised for our iniquities; the chastisement (needful to obtain) peace and well being for us was upon Him, and with The stripes that wounded Him we are healed and made whole.” Isaiah 53:3-5. I pay for peace and rest in your soul. I pray you will know how much you are loved. I pray for comfort for your hearts and for His love to transform your sorrow into Joy! He gives beauty for ashes. Praying for you dear ones……….

  • Reply Emmanuelle March 3, 2014 at 9:15 PM

    Bonjour, vous écrivez si bien! Vous décrivez de façon si vrai le sentiment qui nous habite lors du diagnostique… Et pour le reste aussi. Moi mon combattant est maintenant âgé de 18 mois et il s’appelle Liam SMA Type 1. Très touchant et surtout si bien écris, vous avez du talent 🙂 Ça doit être l’âme de votre fille qui vous habite… Courage pour vous mais aussi pour votre famille.


  • Reply 9 months | Just Enough Light March 3, 2014 at 6:13 PM

    […] write these things today because, as was so beautifully put by another grieving mother on a blog I read recently “I feel as though it helps to scrape these things out of my heart and onto […]

  • Reply Jolie March 1, 2014 at 8:10 PM

    Thank you so much for sharing. Its moving to know of people who live through such grief with beauty and hope. The earth is a better place because your sweet daughter lived here. Her life was so very important.

  • Reply Renee March 1, 2014 at 4:00 AM

    I wear my bracelet along with the cancer bracelet for Craig and think of Lana every day. I know there is nothing more that I can do than keep her in my heart and all of you in my prayers. Know that we think of you often.

  • Reply Rachel February 28, 2014 at 9:43 PM

    I am so incredibly sorry for your loss of your beautiful baby girl

  • Reply Shemiya February 28, 2014 at 8:39 PM

    I am moved to tears by the story of your precious Lana. Praying for you and your family as you move through healing from your indescribable loss. God bless you.

  • Reply Kali Gillespie February 28, 2014 at 2:02 PM

    Sweet mama, what a gift to have you share your story so courageously. You are brave and tender and I just feel so privileged to witness just a little of your journey..much strength and peace to you as you continue to grieve the loss of your precious Lana.

  • Reply Janet Abele February 28, 2014 at 11:05 AM

    There are NO words! Except what all can say . I am sorry, sorry for your pain. she was a beautiful. Baby girl. Glad that you can remember her smiles and spit. Bubbles!!! God Bless You ALL..

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