a year of life: reflecting on hope and letting go of pain.

March 11, 2013, Michaela Evanow, 6 Comments

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Florence has turned one. We have made it through her first year. It didn’t look like I expected it to, and it sure didn’t feel like a year. Every week, every month felt like a lifetime. Her first three months were full of overwhelming moments of joy and celebration. Everything was new, and I felt so relieved to be a mother, to have a healthy baby at my breast. I relived her birth over and over, felt the emotion wash over me, bathing me in rich memories.

And then at 3.5 months I began to notice some things. And because I was a new mum, I had no clue if they were normal or not. The warning signs were obvious, but at the time we didn’t see them.

At about 4 months she was diagnosed with Spinal Muscular Atrophy type 1.

I remember that day we found out about the diagnosis. The sky was an intense, blaring blue. It was warm and we needed the AC on in the car. It was the peak of summer. Life was supposed to be good. I flipped through the pages describing SMA 1, crisp and unforgiving, and felt my whole being reel as I read about life expectancy. One to two years.

We cried together, my husband and I, as he drove the car home. I don’t remember what happened after that. I just remember the drive. I remember drawing the curtains shut, enveloping our bedroom in darkness. Today I keep them open when we are not sleeping, letting the light spill in. But on that day, I put myself to bed, sick, sick, weary and feeling close to death.

We went through grief. The same grief one feels when they lose a child, I think, although I cannot say. It sure felt like it. And yet we were quite alone in it. Besides our parents, no one else knew. We didn’t know what to say, how to tell people, why should we tell people? Life went on but I don’t think we moved.

On Saturday, in our little home, we held a party for her. The house was full of love and laughter, glasses clinking, cupcake smiles and finger foods. So many people lent their love to Florence on that day. I was overwhelmed. The house was donned in aqua for her birth stone, yellow for her birth flower. Aquamarine and daffodils.

I felt such deep things, things that only a mother who has been through some wicked storms can feel. I watched as Jason held her on his lap, careful to keep her head upright, as I brought out the platter of lavender honey cupcakes. I cried. I was happy. She is a one year old and so breathtakingly beautiful, so tender, so full of love and the Spirit.

But there would be no pictures of her fingers picking up pieces of cake and smearing her face with icing. No highchair shots of her clapping her hands and grabbing for a cupcake. The little things I dreamt of when I was pregnant. Okay, so that didn’t happen on her first birthday. That’s okay. There was no pain this time. I did shovel a small spoonful of icing into her mouth, watched with delight, lips covered in seafoam.

All the other babies were crawling around and squealing and trying to take their first steps and chewing on her toys, while she sat in her chair in the midst of it all, still and calm. And I didn’t feel sorrow.

We have come a long way.

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DSC_1090I have accepted this season for what it is. And I also look forward to new life. The transition period, much like transition in the birthing process, was painful, is still painful, and sometimes I feel that I can’t go on. I want to wretch in the toilet, I want to beg for it to be over.

But I know, I know that transition means: the process or a period of time (not forever) of changing from one state or condition to another. So once we come out of transition, we do go into another state.

I believe in redemption. I believe God makes all things work together for my good. He’s not trying to break me. He will make the wrong things right. He will turn the darkness into light. He causes the dawn to break through the quiet of the night.

The last two summers of my life were not pleasant. One summer I was pregnant, in my first trimester, struggling with terrible nausea and vomiting all day. I banished myself to the basement where it was cool, since our little bungalow is stifling in the heat. The hot air made the nausea worse. A handful of times we made it to the ocean, where I bathed in the cold waters, feeling a small sense of relief. The next summer, before the diagnosis, I felt almost sick as the heat and the sunshine started to make it’s way into the city. But, I was no longer pregnant and sick. It was going to be a good summer. Unfortunately a few weeks later we received the news about her diagnosis, and it was a blur, it was a messy, chaotic, painful summer. And I was sick again, sick from grief and fear.

 

Florence is truly a miracle already. She is beating the odds. She is healthy as can be, although she is battling her first big cold right now. I am relieved to see that she has the strength to cough and clear out the phlegm. Sometimes it takes a while, and she seems to struggle for a second to catch her breath. In these moments I have to brush those old demons of fear off my shoulders: pneumonia, breathing difficulties, hospital admittance, weight loss. We worked so hard to regain a pound from her last cold, and she wasn’t even that sick. We work so hard to live. I hope we do it well.

Happy Birthday Florence Marigold. You truly are our flourishing flower.

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6 Comments

  • Reply Debbie Tuit March 24, 2013 at 4:13 PM

    Michaela, I am in my 2nd hour of reading every one of your “chapters” in this blog, from your marriage to this 1st birthday party. Pardon me for saying….”I am bawling my guts out” You are an amazing writer. I can FEEL all you write. I understand, to some degree those dark times. 30 years ago our firstborn , Nick was born. Diagnosed a “Mongoloid” Ya, that’s how backwards terminology for Down Syndrome was back then. “You don’t have to take him home. Send him to Glendale, and go on with your life…..By the way, your chances for having another child that is Mongoloid is now increased substantially” We wept, we grieved, and then I said , God, things out here are so backwards, so wrong. I have fought to change “the system ever since” And still, our son fell into a terrible depression , anxiety, and OCD 6 years ago due to yet another abuse from a caregiver we should have been able to trust. Yet again , faith has to rise up so we can entrust our Nick to God, to restore him, heal him. Some days I believe it’s just around the corner, other days I crumple in the loss of who our son once was . So full of life and humour, and mischief!! My own lack of health makes me weary. I look to my husband to hold up my arms to keep believing.
    Thank you for allowing me to share in your lives in this blog. It has just revived my faith. Bless you and your family.
    As I told your mom, we are committed to believe with you and the many others who are believing for a miracle for Florence.

    • Reply Michaela. March 26, 2013 at 10:52 AM

      I am SO happy to hear from you Debbie. Thank you for writing. It means so much to me to hear you say these things.

  • Reply Nanny March 11, 2013 at 3:36 PM

    What a year full of God’s mercy and goodness. MayHhe continue to bless you Mic and may your faith continue to hold you lovingly when you need to feel His strength.

  • Reply Melissa Naiad March 11, 2013 at 12:34 PM

    The first year of motherhood seems to force so many women to grow (from the birth and from all of the overwhealming emotions from fear to love), but your first year was even more tremendous and powerful. I just look at how you write about your days and feelings–you’re so connected and so strong. You’ve overcome so much, and can honestly appreciate life. Your little family is beautiful, Michaela, and I wish you all the best for this next year to come.

    • Reply Michaela. March 11, 2013 at 12:40 PM

      Oh thank you Melissa. I so appreciate all that you’ve added to my blogging life, your love and words and beauty. Much love to you.

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