I wrote this piece last year when I was reflecting on my changing attitude to being sick. Instead of hating everything about Dysautonomia, I was beginning to see the silver linings. To understand the value of any human experience in teaching us important things, about ourselves and our loved ones. This piece is about my daughter, but it is also about me. About being a little kinder to my own mother heart and not judging all the shoulda/ woulda/ coulda parenting moments.
She was nine years old. And it was only one of the times she had noticed that something was happening for me. I was doubled over on the edge of my bed, wracked with tremors, pushing my terrors for the future away from myself. Carrying the ever present burden of knowing my condition was progressive and living in fear of what was to come. She came over to me and cradled my head in her arms, shushing me and stroking my hair. “It’s going to be okay… poor Mumma” she murmured.
Her arms seemed so strong, yet so frail, wrapped around my head. An image of her tiny hand wrapped around my finger on the day she was born flashed across my mind. I thought about how unfair it was that she should be bringing me comfort. So young, she should be out in the yard doing cartwheels with her friends. Selling lemonade or riding her bike. Not picking up on cues invisible to most and cradling her mother’s exhausted head in her arms.
I looked up at her, filled with the wonder of who she is as a person, her capacity to love, to make me feel like her words could be true. I looked at her as the tears filled my vision. And as I said “I’m so sorry, honey”. She shushed into my hair. “It’s okay Mumma”.
Later, we talked some more about it. I explained that I wished it were different. I told her how much I wished she didn’t have to see me sick, or worry about me, or feel responsible for helping me. She reached for my hand.
“Mum, this is what families do. It’s called loving people,”
she said, her quiet voice warm and sure. This kind of insight is rare in a child. She’s extraordinary, my girl. And she’s right. The time comes in every family when we need to look after each other. It might be an elderly family member or a tiny baby, it might be a sick parent or a child with learning differences, it might be a broken heart or a lost dream. Caring for the diverse needs within a family isn’t the sole responsibility of a mother. It is a work of heart from everyone in the family. It’s what families do. Making sense of the challenges we face and delivering the love and care we need. It’s what makes families work.
I have often raged against my diagnosis. Felt like it is a cruel punishment meted out just to us; us alone, among the throngs of well people smiling out from the glossy pages of normal life. Why is it my husband and children that need to suffer through this? Isn’t it enough that I do? Why must it throw their lives into disarray as well? But lately, I’ve been seeing it more often in a different light. The light that shines through situations like the day she comforted me. I’ve been thinking about her words.
As I watch her grow, I have often thought about the hand we were dealt. She has such a beautiful heart, my girl. Strong and sensitive, sweet and soulful. She may have developed these aspects to her nature entirely independent of our situation, that’s true. But when I contemplate all the challenges we have faced as a family, I know that her life experiences have contributed to the beauty of her soul. Hardship, unpalatable as it is, helps us to grow. I see that she is advanced in the knowledge of all that matters in life. Her priorities are good. Her heart is kind. There won’t be much that she will face as an adult that she won’t already have inner resources for. She’s set.
It’s true that my diagnosis has brought us all much suffering. Yet that suffering has brought a perspective that helps each one of us to appreciate the beauty of life so much more. I didn’t choose to get sick. She didn’t choose to have a sick Mum. There is no need to apportion blame to the facts. They just are.
Because this life, this is the one we got. And it has given us a chance that many others don’t seem to have. Through all of the moments of need and response, we have learned we can rely on each other. We can rest in each other’s arms. We get it. For every difficulty, there is a flip side benefit. For every compromise, respite. Some of those benefits will be more evident in the long term. But some, like that strength of connection between us as her arms wrap around my head, are for right now. It’s nothing to do with sickness or even wellness. It’s nothing to do with how it should be. It’s nothing to do with being a failure as a Mum or over-burdened as a kid. It has everything to do with how it just is. This is life. And as she put it: It’s called loving people.
I’m grateful to have this wonderful girl in my life. I’m grateful for the lessons in love that I get to learn every day. And yes, I am grateful for the space created for that learning by my diagnosis. There are many ways to grow as a person, just as there are many ways shut it down. If there must be sickness, then we are not going to waste any of it ignoring what it has to teach us.
It’s just what families do.