heavenfaced: when a mama thinks about death

June 7, 2015, Michaela Evanow, 16 Comments

I originally wrote this post in early April 2015.

Right now, Heavenfaced by the National is on repeat. I seem to be listening to it a lot these days, and I’m not entirely sure why. Something about it draws me in. And when I’m drawn into that quiet, sad place, my thoughts are about heaven and death.

Although I’m not dwelling in that place of when and what if all the time—it is really, really healthy to talk about it, even if just with myself. It’s part of the journey. It can get complicated when other parents or people have different opinions or religious beliefs or hangups, or—pretty much any baggage. But for me, writing is essential to processing all of this. It doesn’t mean we don’t have hope or have given up. I know I don’t have to say that, but I always feel like I might have to, since so many strangers read my blog. We, as a society, are afraid to talk about death. To this day, people don’t understand the severity of Spinal Muscular Atrophy. They ask: will she get better? stronger? Can she sit up? Can you travel with her?

Nope, I tell them, she could literally die on our way to the park. Every trip we take with her, be it to the hospital or Canuck Place, is full of nervousness and anxiety.

Except recently. We have been doing more with her, and relinquishing some of our control.

And there is a lot of grace. I don’t know how else to explain it. We have been on this journey for THREE YEARS. The thing with this disease and with this kind of grief is…it’s complicated.

You receive a diagnosis. You are told horrible things. You fight against the labelling of your child. She has special needs…I think. 

Nope, she doesn’t have special needs. I don’t fit in with those mothers either.

Then, denial. Before the symptoms fully set in, or before the first emergency, you think: She is going to beat this! She is strong! She doesn’t have a disease. This must be wrong! I remember asking the neurologist to run the test again. NOW. Please. I begged her. She didn’t do it.

Then, reality plunks itself down: She’s sick. She’s sick? Oh my God, my baby is sick and will not get well. She is sick and slowly…dying.

It is one of the worst things you can imagine. To grapple with the grief of a terminal diagnosis. To be confused by it. Am I in mourning? Or should I just be enjoying each day as it comes? But how can I? Every day is a gift, but it can be filled with danger and tears and fear. It can be awfully scary.

In this day and age, there are a lot of interventions that parents can choose to make. It wasn’t always like this. Children and infants with Spinal Muscular Atrophy or any number of diseases or special needs simply passed away 15-20 years ago. They didn’t have to make the decisions that parents do nowadays. It’s a blessing but also makes things quite hard and confusing for parents and caregivers. Culturally, there are divides as well, even between Canadian, American and provincial health care systems.

So, when things get too hard to process, I turn away from thoughts of death. Let me remind you, as a parent of a sick child, thinking about death is a normal thing. Please don’t ever tell a parent they shouldn’t think about it, unless it’s obsessive, of course. You are not in their reality. You don’t intervene to save the life of their child. They do. Death is nearby. And they have become accustomed to it. They have seen the shadow, and sometimes they have all escaped—but it’s never unscathed.

One way I de-stress and recharge is by turning on some world music and letting the other part of my thoughts drift back to past traveling experiences.

Traveling used to be a massive part of me. I thrive off of those memories; the spices, recipes, fabrics and music collected along the way. I have matryoshkas from the heart of old Ukraine. Brass bells and bowls and stacks of fabric and silk scarves from India. There’s the hand knit folk slippers from Sarajevo, and the enamelware from Croatia (before it was cool.) I know these things don’t define me or even enrich my life. But they are dusty, tangible memories of lands traveled. My feet walked into catacombs and crumbling ruins and bustling markets and historical sites with heavy stories.

I haven’t traveled in ages. Our last trip was to Maui while I was 25 weeks pregnant with Florence.

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I swam in the ocean alongside massive turtles and felt her move inside my womb. The water alleviated my nausea and sore body. I spent ages in the water, which is very uncommon for me. I also swam out too far under a gray sky and had a panic attack while clutching my husband. I was terrified that the sharks would come, since it was getting kind of stormy. I may have a mild obsession with Jaws. I remember crying into the salt water and grasping my belly. Jay tried not to laugh, but he sure did. It was a panic attack of sorts, out there in the middle of the water in a bikini.

Just the other week, I was thinking about traveling and how we really, really want a vacation. A beach vacation. Billowing white linen and hot sand. Turquoise waters warm enough for a newborn. Fruity poolside drinks and a king sized bed with bleached white sheets.

It’s an escape. I know that. I also know what it might mean if we do take a trip like this. These little dreams come with a cost. They are a cry for normalcy and for respite.

But they are incredibly costly.

I decided then, that one day, if we no longer have Florence…I want to take her to all the places I always dreamed of taking her.

And when I say take her, I mean, her precious body in the form of ashes.

Deep breath.

I want to drop a pinch of her into the Hawaiian sea and watch her swim with the turtles. I want her to feel the ocean waves like she did in my womb. I want to take her to her namesake, just because. Florence in Florence, for ever and always. I want to take her to the highest mountain I can climb—a symbol of the journey, a little bit closer to heaven. I want to do these things, but I’m not sure I understand the complexity of scattering ashes.

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25 weeks pregnant with Florence Marigold in Maui.

* * *

June 7th, 2015

That’s as far as I got with that piece. In that moment, I needed to write those things.  It was a bit flip floppy and choppy, but it was necessary for me to write.

And now.

We are planning on flying to Hawaii in a few weeks.

It just sort of happened. Initially, we thought the distractions and hustle and bustle of California would be good. But, eventually, we came back to Hawaii. To the salt and the sea and the sun and the serenity.

I have no idea if we will take some of Florence’s ashes with us. Now that they are here, I feel somewhat distressed with the idea of scattering all of her. I want her. I want her with me always. But, as her mama, I feel the need to make new memories with her.

So, perhaps, if we do take her, it will be a tiny pinch. A symbol. She couldn’t swim in the Hawaiian ocean, but she was there in my womb. And her fierce, tender spirit will be with us.

But, the reality is, she won’t actually be with us. The only reason we can travel together is because she is no longer here. It is weird and bittersweet and sad. But it’s also our slow way of moving forward and allowing ourselves the permission to see the world…without her in it.

16 Comments

  • Reply stacy July 7, 2015 at 5:49 PM

    I know a mama who has her baby’s ashes in a heart pendant necklace. I get that wanting to share her ashes but wanting to have every part of her with you. I cannot imagine how hard that is. My hope and prayers for you are that you would know the comforting presence of our Lord in this and that you would have clarity in your decisions as you have to make them. Enjoy Hawaii, too!

  • Reply Mel June 25, 2015 at 2:30 PM

    Blessings to you dear one. My daughter is in Paris right now traveling Europe. 😀
    I planted some marigolds too.

  • Reply Krista June 19, 2015 at 5:37 PM

    When I think of a mother who I admire, I think of you even though we’ve not met. I admire how you strive to be present in every moment spent with both your children. It feels as though the fast paced life of North America seems to swallow the still moments of motherhood but you have managed to relish them. Thank you for being so inspirational.
    I’ve had the song ‘Even When It Hurts’ on repeat since Hillsong released it and it make me think of you. I’m in awe of your ability to still praise Jesus through your suffering. In the live version, Taya reads part of Psalm 69 from the Message and I just love the way the Message has worded it.
    Music always seems to speak to my soul and I hope this speaks directly to yours.

    Live version: https://www.youtube.com/watch?v=TG28L2QKzVI
    Version with lyrics: https://www.youtube.com/watch?v=3Sv_876eqxg

  • Reply Betsy June 11, 2015 at 6:09 PM

    I had an idea that I wanted to share with you. When my beloved grandmother died last summer at the age of 93, my mother put some of her ashes into a set of matryoshka dolls and gave one to each of the grandchildren. Since I know how much you love matryoshka dolls, I thought maybe you could do this with Flo’s ashes. Please forgive me if this idea is offensive to you. I have the doll in my kitchen and I like to see it there when I’m cooking or watering the plants. Now when I look at it I think of Florence too.

  • Reply Sue June 10, 2015 at 11:44 AM

    Darling Michaela, I bought marigolds today. Off to plant them and will think of you all every time I se e them
    Will send you a pic.
    Sue xo

  • Reply Kathleen June 8, 2015 at 7:58 PM

    Do what makes you fell best! For me, there is no need to spread ashes as my child is always with me, and where I go, he goes. So swim with the turtles and Florence will be swimming too. Dance and she dances, see and she sees. She lives in you and through you now. That’s my view, anyway.

  • Reply Daniela June 7, 2015 at 9:51 PM

    This is so beautiful. And I am a complete mess. xoxox

  • Reply Leelee June 7, 2015 at 6:52 PM

    Bless you! Florence has amazing parents

  • Reply Diana Trautwein June 7, 2015 at 4:45 PM

    Again, thank you. Thank you. When my son-in-law died – and he knew he was dying for quite a long time – he asked that his ashes be taken to Catalina, his favorite place and a gathering place very summer for his wife and kids at a family camp there. Lisa buried some at the foot of the cross at the top of the bluff, and we all let some blow out over the water from our spot on the pier. She took some with her, gave some to his mother, and she has them still, I imagine, though she is now happily remarried and living a very different life. I get that feeling of wanting to take them with you wherever you go and also wanting to have them with you. You can do both. And I am thrilled beyond words that you’re going to HI. Just about my favorite place on earth, and the best place I know to rest and begin to rebuild. Dear girl, God goes with you. So does Florence Marigold. Much love to you as you travel (We’ll be on Kauai from July 1-24. Where and when are you going??)

  • Reply Becca June 7, 2015 at 4:40 PM

    I remeber when you wrote about swimming in the Hawaiian ocean with your baby girl inside of you. I loved how you cherished that pregnancy even though it was such a difficult one. You always inspire me to take hold of the moments in front Of me. Love you friend. Keep writing, keep sharing, I’m so happy you are going back to Hawaii. Love, b

  • Reply Nicki June 7, 2015 at 11:41 AM

    Beautifully written. Bitter-sweetly relatable. Love, love, love being sent your way Momma. Keep writing. Your words help heal my troubled heart too.

    • Reply Michaela Evanow June 7, 2015 at 3:40 PM

      Nicki, thank you for writing. Means a lot.
      xo

  • Reply Sarah Condon June 7, 2015 at 11:04 AM

    I weep for you and all you are navigating without your girl. And I am astonished by your writing.

    • Reply Michaela Evanow June 7, 2015 at 3:40 PM

      Sarah, my friend, thank you so much for your love.

  • Reply Sue June 7, 2015 at 10:42 AM

    Michaela I don’t have any words except I love you

    • Reply Michaela Evanow June 7, 2015 at 3:40 PM

      Thank you. xo

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