How do you spell love?

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.

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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

 

Photograph by Be CouperResources:
Statistics sourced from the National Alliance for Caregiving, 2009 ‘Caregiving in the U.S’.
Prior reading from the American Psychological Association.
Care Giving USA
Young Carers Australia
Carers NZ
Young Carers UK
Young Carers Canada

Paper: Global perspectives on young caregivers

4 thoughts on “How do you spell love?”

  1. What a beautiful post and column Rachel. I’m glad you’re writing a regular column and more people get to read your words. Time = love with kids is so true, and I think your children are so lucky to have a mum like you.

    1. Aw thank Pia! I think you have to look at the positives wherever you can. I feel so lucky to get time with them when I am not rushing about… it’s because I can’t rush about, but it really is a gift for us. 🙂

  2. Just having a catch up read on your posts as I had some time this afternoon. So true empathy…. the world doesn’t have enough of it. Its heart warming to know that your children understand its meaning well and have such care for others. I think its a really fantastic quality in a human being. To be able to show empathy for another human being. I think that in a way living with a mum who has had health battles, only will serve them to be broader and richer grown ups, I am positive that the things they learn now about have care for someone else will only go on to serve them so well in life. Lovely writing as always Rachel. X

    1. I hope that is true, Nats, about being braoder and richer grown ups. And I am honoured that you are using your time to read some of my posts! Wow! Thanks so much!

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