Mama grief is a difficult thing to make sense of.
There are expectations I have put on myself. And society has too. We are a fairly traditional family. My husband works and provides for us. So, when he goes off to work, I find myself at home since we sold our wheelchair accessible van rather quickly after she died. I wanted it gone. We both did. Our family members cleaned and polished it and we posted it to Craigslist. And it was gone.
So, as we look for a new car for Theodore and I, I find myself at home more than I’d like to be. I was at home for years with Florence. I got used to routine, and kept myself busy within the walls of our home. Once Theodore came along, it was much harder to get out. Florence wasn’t stable enough to travel by herself in the back, so we always had to have another adult with her. It was Teddy and Flo and mama at home. We moved to a nicer place with a big yard and family close by. I had my two babies and I was happy. We got her the flatbed swing, so she could be in the garden with me, while I strapped Teddy to my back. We started working on keeping the house really comfy for all of us homebodies.
I was also in the process of starting my own business before Florence passed away. I worked from home and it was good and busy. I took care of both my kids and at nap time tried to check off things from my to do list. Now, Jay has gone back to work. And it feels a bit funny to get back into the swing of things. I’m supposed to…grieve. But what does that look like? What do I want it to look like? What do other people think it should look like?
Confusion goes hand in hand with grief. How do I do this? What am I supposed to do? What will others think if I laugh?
I’m a mother and I lost my three year old daughter.
But I also do other things. Just as Jay does other things.
A sweet friend wrote me and said: I think about you often, but for ‘normal’ reasons: when I have a question about essential oils, or read my son a book you gave him, or see an article about maternal mortality in the developing world. I’m sure you’re still being flooded with messages from people grieving Florence, and we are too, but I just wanted to remind you that your identity is more than the woman who lost her daughter. I think of you more than that. You are a friend, a doula, an expert in many things, and I see that.
She told me exactly what I needed to hear. I just didn’t know it until I read the words and they pulled out a deep exhale from within my heavy heart.
As a mama of a child with SMA, a lot of my time was spent with Florence. It was intensive. And although I felt a bit of my worry and fear for Flo leave my shoulders after she passed, I’m now realizing I’m afraid of being home. In the quiet. When Teddy sleeps, my sweet companion isn’t around anymore. The sound of her giggles, the music from her favourite shows, the hum and garble of the suction machine. All gone.
So I pour myself into working on my business. It’s a miracle if I get the laundry done and do the dishes. But still I crumple. I am tired. I am so tired. Grief is exhausting—physically, emotionally and mentally. This is why feeding those in mourning is a wonderful, magical, holy thing.
I follow so many beautiful SMA mamas and I still know how they feel and what they carry. I know the weight of worry. The burden of stress. The hunger for normalcy and for a cure. And the grief, too. The helpless, awkward grief of mothering a terminally ill child.
And now…I miss it. It kept me busy. It kept me going, going, going. My motherhood was, in a sense, defined by Spinal Muscular Atrophy. She was our firstborn. We knew nothing else, until Theodore was born.
I’m too tired to redefine it. It’s not time yet.
But I am starting to work on my business again. I’m trying to be less afraid of the silence in my home. I’m begrudgingly cleaning my toilets and doing dishes. But mostly, I’m spending time in the garden. Clawing my way through the dirt. Planting and pruning and watering and tending to the veggies and marigolds. It’s a safe place. A mutual friend that recently lost her husband, wrote to me about being in her garden, and weeping and praying for her loss and mine. She called her garden an altar. Oh, how that resonated with me.
We took down her flat bed swing in the yard. The sight of it broke my heart into pieces. I pushed it a few times—empty and creaking. I wept. My memories of her are sacred. I want to see her swinging, happy and giggling as the wind whispered through her curls. She loved the wind.
After we took the swing down, I hung up a butterfly and marigold wind chime instead. She’s in the wind. She’s in the musical chimes.
A friend sent me a finger puppet book called Little Butterfly. It reads:
One day soon, I will be bigger than this leaf, and free.
One day soon, I will go floating on the winds that blow.
Although I’m small and eat all day, one day soon, I’ll fly away.
…I’ll dream of wings, and air, and sky.
One day, I’ll be a butterfly.