Blog posts by mommy Shana and mommy Jess

Three children, two moms, one C.P. diagnosis....and a partridge in a pear tree.

Thursday, June 7, 2012

Liar by mommy Jess

I’m going to make myself unpopular and I don’t particularly care. I am straight up sick of the mommy blog-o-sphere that deals with children with disabilities. I’m sick of dominant heterosexuality, the whiteness, the economic status, the bright photos of expensive vacations, and most specifically this “gee golly gosh god sure did hand us a tough load to carry but I’m going to smile my way through it” attitude. I don’t exactly begrudge any of the above (okay, maybe the vacations) but I think the push for parents to smile or make the best of things is at best unfair and at worst dangerous.


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.

7 comments:

  1. Your profound insights are so achingly candid. Thank you so much for helping us understand.

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  2. Thanks Jan, I hope you are doing well. I was just thinking of you the other day when we hosted a speaker who talked about the lost art of journalism...made me think of you and the amazing work you do! Jess

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  3. Thankyou for writing that. Both my twins have a hemiplegia and your words spoke the truth for me. How refreshingly honest. Mandy(Australia)

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  4. Great to find your blOg with such a refreshing, honest post! Funnily enough I thought of my friend Mandy and by coincidence she posted above! Small world! My son has athetoid quad cp and pretty much all day today I have wanted to throttle him! ;) nothing to do with cp, moreso the whining about new iPad apps!

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  5. Thank you for this post. Everything you say is true. But I hope you can try to find some middle ground between your authentic and totally legitimate feelings and what you feel you need to put forth fir your kids, family, friends, etc.

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  6. Thanks Anon, I suppose that was what this post was about, that I put forth all that my kids and partner need (extended family and friends not included) to be the best parent/person possible in our time together. Trying to find that middle ground and realizing that it wasn't possible to have both was what made me feel like a liar and thus choose to have somewhat artificial relationships in many apects of my life. I just picture as carrying this other person with me who holds the authenticity/feeling about this issue who isn't allowed to speak. Not sure I'm helping here but I want to be clear I'm not spending my time with my kids/partner unhappy and brooding I'm spending it like every other mom (yelling at their kids to stop throwing sand :)) Mommy Jess

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