Every year I find myself time travelling over our box of Christmas decorations. All those handmade kid decorations and the sentimental ornaments that take me back to times before. There are the annual ornaments I always received from my Mum, a tradition now adopted by my sister. There are the ones from children I taught, and older ones too from so long ago I barely remember their origins. Garlands and baubles and hand embroidered love hearts. Toy soldiers made from pegs and pipe cleaner reindeer. Jingle bells from the first year I was married and a tiny wax baby Jesus nestled in a walnut shell. I watch the kids unwrapping each one and remembering, smiling as they feel that special Christmas magic. It’s a time of year I adore. The carols play us the lullabies of yule and this mood, this palpable feeling is the reason why I love this season so much. Family, love, memories, togetherness.
Only this year, I can’t manage to trim the whole tree. December First happens to have been a very big day this year and we are all a bit tired. The children lift and bring me each decoration and my arms shake as I hang them; just so. I push myself far beyond my capabilities. My husband puts the kids to bed and returns to find my head in my hands. I am spent. It’s not just the emotion of Christmas. I literally can’t move my legs. The weakness and pain radiates down my legs pinning me to the chair. I stare at the tree. The lights blink through the blur of my tears. It’s Christmas, but not as I know it. I don’t understand this pain I am having, the weakness and trouble with walking. I am afraid of it. It’s not a usual Dysautonomia symptom. Walking is not mediated by the Autonomic Nervous System, but the Central. I don’t understand and I don’t want to even try. I’m just weary. I am upset that even Christmas decorating is now tainted with the wrongs of this body. I try to make the tree come back into focus. It’s beautiful. It’s not finished… but there is tomorrow.
My favourite carol floats through the living room. My tiredness overwhelms me. Time for a silent night.
I wrote this draft for the DINET (Dysautonomia Information Network) Newsletter. I am one of their new parenting columnists. This piece is about the opportunity Dysautonomia gives our kids to learn about empathy. If you have been reading my blog, you may remember some of these anecdotes. It is a US based publication, which is why I refer to myself as MOM! Do you have any feedback for me? I’d love to know your thoughts on this aspect of parenting with Dysautonomia.
It’s one of those mornings. I know it the moment my eyes crack open and the light floods my eyes. There is a flash of pain as my pupils struggle to assimilate the light. Too bright. The nausea grips my abdomen and somehow, I make it to the bathroom to vomit. I am there on my hands and knees when I feel a small, warm, hand on my shoulder. My daughter. She passes me a hair elastic.
“Here, Mom …to keep your hair back” she says, quiet, matter-of-fact. She is a special soul, my girl. Kind, thoughtful; empathetic. I so wish that these traits had not developed through living with a sick Mom. But that fact is something I can’t change. It just is. We are in this together. My son, similarly, has grown up with it.
Recently I was again, in the bathroom. For weeks I had been unable to poop. But this day, success. My son raced into the bathroom. “It’s good to poop!” he whooped, grinning and tossing me a roll of paper with an exaggerated wink. It might be a strange thing to celebrate, in average households, but not when dysmotility will drive you to hospital. I shook my head in wonder. What kind of extraordinary grown ups will my kids be? They already know how to respond to the distress of others, not just how to articulate their concern but how to behave in a responsive, helpful way. They are matter of fact in their understanding that some things just require action. And they have the ability to see the funny side of things other kids might find horrifying. They just get on and do what needs to be done. Practical, kind, funny kids.
Empathy is a skill that has been researched thoroughly by those in the fields of psychology, sociology and genetics. There are actually genes that have been identified as being markers of hereditary empathetic tendencies. But empathy itself can also be taught and learned. It is easy, as parents with Dysautonomia, to think about all the things we don’t get to teach our kids, about every lost opportunity or failed parenting moment. But today, I want us to reflect on the gift our illness does give us and our children, in particular. A head start on how to be good humans.
We can look at our illness as the taker of so much. Or we can choose to remember that character is built on adversity. Ours, but also that of our kids. Have you ever considered that you look at the world differently since you became ill? Your kids will too. They will have a heightened experience of beauty, a deeper appreciation for relationships, a better understanding of why it is important to make the most out of every situation. They will have that, especially if we are modelling it for them.
Studies show that as many as 1.4 million children in the US, aged between 8 and 18 are caring for a parent, grandparent or sibling with disability or illness. The numbers are undoubtedly higher now.
We can’t change the fact that our children shoulder more burdens than many. But we can be mindful of what they need within the context of their child care-giving roles. Here are three things we can make sure we are doing to help them.
Talk about it, but not too much
Make sure your kids have age-appropriate information about what is wrong with you. Don’t discuss it constantly, but make sure it is a natural and easy thing to talk about. Be open to answering their questions. This will help them to reduce the stress and worry about it. It also helps them to have the vocabulary to explain things to their friends and people in their circle. There might be scary situations that happen; like passing out in front of them. Make sure they have a clear plan for what to do and reassure them that your body is trying to do what it needs to do, but sometimes it doesn’t work right. My son is seven, he explains Dysautonomia this way: ‘something isn’t working right with how Mom’s brain tells her body what to do’. And that is no more and no less than he needs right now. If you talk about your every symptom with your kids, it can increase their emotional burden. Try to generalise. We talk trends rather than specifics wherever we can.
Identify a support crew
Caregiving kids need someone outside the immediate family that they can talk to about things. It is best if this person understands the situation thoroughly, is trusted and chosen by your child. They will need to talk sometimes about the difficult stuff. But don’t take that personally, it is a natural and healthy thing for children to be able to discuss things without feeling like they will hurt your feelings. They need the freedom for that. This support person/crew might provide time and activities that you can’t. If you don’t have a network around you, try contacting community organisations, churches or your child’s school. There are organisations who can provide more information.
Respond to their emotional needs
We can do that. Many a deep conversation and tender commiseration has been given right here on my bed, with my kids in my arms. I am able to be present to their feelings. I can empathise with their problems. They both say they love having time with me here. They love that I have time to spend with them. Many well Moms are too busy for that. It’s a gift. It reminds me of that saying…
I rarely get a chance to watch the news these days. When I do, what I see there fills me with such sadness and shame. Are human beings really so far removed from one another that killing, hurting, and destroying each other is acceptable? Where have we gone wrong?
It makes me think of all the children I have ever taught. Even the most damaged souls, kids who knew nothing but violence from the moment they were born… kids who had every reason to want to kick back at life, at anyone, for letting bad things happen to them. Every single one of the small humans I ever taught had an irrepressible need for laughter, for peace. Structure and calm. Creative expression, acknowledgement, support. Every one of them responded to a positive approach. If someone believed in them and their ability, they were confident to believe in themselves. That was my job, as a grown up in their lives. My job to give them a calm, positive place to be happy, productive and learn. To show them that they meant something to me.
In my first year of teaching, Nine-Eleven happened. As I got ready for school that morning, I listened to my alarm clock radio with horror. Things like the twin towers attack had occurred before in history, in times of war. But in my lifetime, Nine-Eleven was the first time I was cognisant of a risk that our whole world might once again fall into war. How naive of me …have we ever not been at war, somewhere on our planet? This event seemed to reach the doorstep of the middle class west. How privileged I have been to escape war. How afraid I was, on that morning, that our world was about to descend into a war to end all wars.
As my class gathered that morning, there was a different kind of chatter on the mat. They had questions. Some were afraid, some found it exciting, like a scene from an action movie or computer game. Some were confused. My multicultural class of children were a mix of the very quiet, the excitable and the belligerently opinionated, we had muslims, buddhists, christians, pagans and the non-religious too. So we sat down to talk about it. First, I pulled out a book I have loved for a long time by Nikolai Popov. It has no words. Just pictures. It is simply titled: Why?
The book explores the origins of conflict. And it was the very seed of conflict that I wanted to reach with these kids. The nub, the start, the absolute beginning. I wanted them to come to a realisation about something very, very important. So important that our world depends on it. They were such smart kids. We began to brainstorm all the things that might begin conflict between two individuals. We talked about siblings, playground scuffles, when parents fight, gang violence, baddies versus goodies, countries, war. But it all came back to individuals, in the end. To each child, who will one day be an adult. And this is what it all came down to:
“Conflict happens when I believe
I am more right than someone else”
These kids were 10 and 11 years old. Similar in age to the boys killed on the beach in Gaza. I make the comparison because there are children caught up in a war over in the Middle East. Children. And the grown ups in their world are not providing them a calm and positive place to live. They are too busy being more right than each other. Bombing each other. Destroying each other. I don’t get in to the debate about who is right and who is wrong. But I am sickened by the way people on facebook so happily ‘take sides’ in a war that is a long way from their cultural and political worlds. And even further from their own children’s backyards. If we take sides, we are believing ourselves to be ‘more right’ than others. When will a dialogue begin about compromise, understanding, valuing human life?
I was struck by contrast this morning. Two videos on facebook. One posted by a Christian I know and respect. One posted by an Agnostic I know and respect. One assumes the Israelis ‘more right’ than the Palestinians, it is a video of the Israeli troops celebrating about going into battle. The other reports on the human cost of the war, the staggering reality of the average age of Gaza’s population. It is so hard to not make a judgement, based on those two clips alone, about who is ‘more right’. But instead, I will focus on the thing that matters most.
I think about those children, on both sides of the walls.
Their families think they are more right. They take their ‘right’ to bear arms against one another, and remove the right of their children to live in a world where we don’t shoot to solve an argument. Where we make room for difference of opinion. If my class of kids from every corner of the planet could get along and make music together, why the hell can’t the grown ups of this world? Get over yourselves, big people. Move over. Live and let live. Grow up. Do you want peace? Be peaceful. Stand down. Show your children how we resolve conflict, lest you teach them how to maintain war.
My class, back then, tore paper into tiny little pieces and made an enormous peace rainbow for our classroom wall. Every time we felt ‘more right’ than someone else, we’d look at that rainbow and remember: all the people of many colours, gone from our world because of conflict. And we’d extend a hand and try,
to understand each other.
What is it good for?
What is it good for?
Say it again, yeah
War, good God
What is it good for?
Absolutely nothing Listen to me
Oh, war, I despise
Because it means destruction
Of innocent lives
War means tears
To thousands of mothers eyes
When their sons go to fight
And lose their lives
War, it ain’t nothing
But a heartbreaker
War, friend only to the undertaker
It’s an enemy to all mankind
The point of war blows my mind
War has caused unrest
Within the younger generation
Induction then destruction
Who wants to die?
War, it ain’t nothing but a heartbreaker
War, it’s got one friend
That’s the undertaker
Oh, war, has shattered
Many a young mans dreams
Made him disabled, bitter and mean
Life is much to short and precious
To spend fighting wars these days
War can’t give life
It can only take it away
War, it ain’t nothing but a heartbreaker
War, friend only to the undertaker
Peace, love and understanding
Tell me, is there no place for them today
They say we must fight to keep our freedom
But Lord knows there’s got to be a better way
Good God y’all
What is it good for
Stand up and shout it: