don’t forget the light

light 1I am admittedly angry a lot.  I’ve been pissed off by systems who cut services for people with disabilities.  I fume about biased language in publications.  I am disappointed by health organizations who say they engage patients and families, but who use them in a tokenistic way. I’m livid at the families who stare at Aaron in the park, and who haven’t taught their children about diversity and kindness.  I’m in a rage at all the people who asked me why I didn’t get prenatal testing.  Steam comes out of my ears every time I see a prominent family in our city, as I vividly recall how their son treated my son with such distain at school.

My shit list goes on and on.  I’ve always assumed that change is going to happen through outrage and a subsequent call to action.   And sometimes it does work – the All Kids Deserve Health Services campaign was born out of a great family rage when our own children’s hospital (and my employer at the time) tried to shut down our Down syndrome clinic.

But, eleven years into our journey, I wonder if there is also another way.  Yes, let’s continue to fight injustices in the world for people with disabilities.  But for me, I wonder if all my anger and frustration directed at society, systems and ignorant people is taking over.  I’ve often said that I don’t want to be a mean and bitter mom.  But I can see how this anger will eventually consume me.  All my anger is starting to block out the light.

A few weeks ago, my husband was manning the bench for Aaron’s floor hockey team.  Another dad was chatting with him, catching up on news with our boys.  As is always the case, they ended up talking about struggles with school, with waits for specialists, and our frustrations in securing speech and language pathology services for our kids.

Afterwards, my wise husband said:  Why, if we say that Aaron is a boy first and the Down syndrome comes after, do we always talk about the Down syndrome first?

I was struck by his words.  Maybe us parents concentrate too much on differences, too?  Maybe we can also make change by showing the world our children’s light?  Maybe the idea of having a child with a disability wouldn’t be so terrifying to prospective parents if we weren’t so mad all the time.   And I think quietly to myself:  maybe I’m the one missing the awesomeness that is Aaron in the small moments – when we are reading bedtime stories in bed, when we play Trouble outside on the deck, when we bake cookies together – because the volume of my rage is hard to turn down.  I need to learn to mute my anger to make space to practice kindness, compassion and whole-heartedness too.

I’m not going to stop calling the media out for their biased language, or sharing our family’s perspective with health and educational professionals.   And while I’m not telling folks to not be angry or frustrated, I’m suggesting that we give ourselves permission to be happy too.  And with that thought, I am going to hit publish on this post and take my son for a walk to get Slurpees on this beautiful summer day.




One thought on “don’t forget the light

  1. michaelsmom says:

    Beautiful message. I feel the same way as you- it’s easy to let anger and frustration and sometimes jealousy! consume you (as I often feel!)- but we must focus on those moments of joy, pure sweetness and unique and amazing abilities of our children. This message is a good reminder for all of us with children with disabilities.

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