heavenfaced: when a mama thinks about death
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.
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.
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.
* * *
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.
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.