Thursday, June 7, 2012
Now let’s be clear, because when we talk about attitudes towards our children things tend to get black and white very quick. I’m not advocating adopting a permanent cloud of gloom that blocks every ray of sun. I’m just inserting the idea that maybe, just maybe, it is okay for parents to be sad, traumatized, to mourn, to grieve and to know there is nothing wrong with them for feeling that way.
I’ve heard so many mothers over the past month note they have accepted their child’s disability and the ways in which it has changed their life and view this as a mark of maturity. As though moving past those moments of sadness was some kind of accomplishment for which they should be rewarded and can now move on to putting all that unpleasantness behind themselves. Maybe so, but to me it seems shallow. I think they’ve succeeded not in acceptance or maturity but in fooling themselves.
And, because it is THE pervasive narrative of mothers of children with disabilities it leaves the medical community, the early intervention service providers, and the rest of the world expecting this eventual acceptance and thus at a loss when they don’t find it with us (and presumably with others who don’t live in a manufactured fairy tale).
Knowing this, my life is 90% lies because while I have the energy to do many things I do not have the energy to change this deeply ingrained idea. And, really let’s be honest I don’t have the power. So now the sorrow, I swallow it with a smile. When my eyes fill with tears watching Greta struggle to navigate the simplest playground I blame it on the sunshine. When I hide the boxes upon boxes of medical records in the deepest corner of my closet knowing that a run in with them will cause my throat to close and my heart to flutter I say I like to keep things neat. When I wake, every night unable to sleep for hours I point my finger at wanting to catch up with some tasks at work and not the simmering rage that is always boiling below my skin waking me with nightmares of indescribable horror.
Full disclosure I have always operated as a “normal” mother with my children. If you didn’t really know me you wouldn’t even see the darkness cross my eyes only to be quickly blinked away. Having to hold these lies is exhausting. I don’t have any real friends. I don’t have real relationships with my family. I feel like I’m being infected with plastic and the only response I get from those most like me is that one day I’ll accept things as they are and be like them. To which I can only muster a bitter laugh because as tiring as this act is, at least my mask comes off.