My emotions are running the gamut right now. There seems to be so much to fear, especially after seeing the horror of the bombing in Boston and the ongoing concern and frustration over the responses (and lack of responses) to Ethan Saylor's death. Last week many of us bombarded Twitter with #justiceforethan. I finally signed up for a Twitter last week for the sole purpose of participating in the vigil and and my Twitter account was suspended the next day, presumably for spam. Sigh. I'm still waiting for a response to my appeal now.
Cora's recent illness with fever has resulted in even less sleep in our house, which is saying a lot, since we are in a perpetual state of sleep deprivation anyway.
So what is it that is keeping me going? What is keeping me from feeling like throwing in the towel?
Last weekend Nick and I attended All Born (In), the Northwest Down Syndrome Assocation's yearly conference on cross-disability inclusion. The prior year I went and tried to focus on details relevant to the toddler/baby years with some sessions on IEPs and rights, etc. And it was all a bit much for me.
This year I went looking for a bigger picture. And you know what? I found just what I needed. I can't even tell you how many times I had to wipe away tears as I heard the testimonies of several incredible speakers.
I listened and learned about how to raise a visionary by keeping your own vision always in sight. I re-affirmed for myself the importance of presuming competency in our children. It is so easy to constantly question, so I am glad to have been reminded that perpetually questioning our own children's abilities can be more limiting to them than their disabilities.
But the most poignant thing I heard, and which rang true in that way that truths so often do, when you realize you've known it all along, is that our hopes must be bigger than our fears.
Our hopes for our children and our belief in their gifts, strengths, and abilities has to be stronger than the fears that they won't be accepted or that they won't achieve, or that even worse things may happen. These words were especially difficult for me in light of Ethan Saylor's death. The fear of my child suffering that kind of abuse has the power to incapacitate me. And I can't give fear that kind of power. I can't let it take over me, and I certainly can't let my fear limit my daughter.
Each person has gifts to share with the world, a way to contribute to their communities and their societies. As parents it is up to us to help our children discover and realize these gifts. It is up to us to be creative, to be brave, to make ourselves uncomfortable, even, as we help our children be seen, as we help our children form relationships and become contributing members of our society. The last thing I want for my child is for loneliness to become a hurdle more disabling than any diagnosis could be. Giving my vision of her life over to my fears could well help those fears to come true.
Yes, horrible things do happen. It is so hard to erase our fears that our children will be victimized as a result of their disabilities. But we must try. We must try to keep our own visions BIG enough to outweigh our fears.
Thank you to All Born (In), to Connie Lyle O'Brien for reminding me of the importance of hope over fear, and to Roberta Dunn for helping me refine my visions, especially when the world looks so dark.