for a loosened heart

 it's known from animal studies and from life experience, that random, irregular trauma is more traumatic than consistent trauma. you might think that it would be worse to experience something painful everyday than twice a week at unspecified times, but it's the unpredictability that worsens the stress and anxiety. there is something in us that wants to wrap our mind around our days- to know- to prepare- to plan- to find normal, whatever that normal might be. basically dependable consistent bad, is more tolerable than less, but irregular bad.

this is part of the joy of being a parent of a child with special needs- which by the way, makes me a parent with special needs ;). the thing is, you can be sailing along thinking things are going well and are moving in the right direction, when all of a sudden, THINGS FALL APART. it doesn't need to be a massive falling apart to bring on the trauma- it can be the simple over reaction to not being allowed to have your 4th large helping of french fries that dissolves into "you never understand me! i hate you! you should just put me in a mental hospital! i'll never be okay!" which then continues like a tornado, sucking things into it's vortex. things like siblings and parents and bedtime routines. and all that somehow negates the wellness of things- as you remember that nothing in your life is normal, nor will it ever be the normal you expected, that unpredictability is the only normal you will get.

the dissolving carries things with it. it's not just that hour of disruption, it's the memories of backward steps and seasons. it's the fear of forever, and never, and always.  it's the anger at the injustice of it all, and the guilt that you are resenting your own child, and the sadness of knowing that what i'm hearing is only a part of what it must feel like for her when things fall apart internally, the frustration of not being able to regulate. 

but it's time to be done with normal and fairness. because it doesn't need to be that. expectations and comparisons are tight and binding and stunting and limited. it can be so. much more. when it's about choosing and allowing. 

I will not die an unlived life,
I will not live in fear
of falling or catching fire.
I choose to inhabit my days,
to allow my living to open me,
to make me less afraid,
more accessible,
to loosen my heart
until it becomes a wing,
a torch, a promise…

Dawna Markova

all this is my living. her living. our living.  as it was and is and will be.  it's what i've been given and it's up to me to inhabit and allow and loosen.

for the freedom of a wing. the vision and warmth of a torch. the hope from a promise.