This is a re-post from last October. It remains relevant.
What is “faith”? How does it affect the way in which I perceive and integrate Down syndrome within my life?
I see faith primarily in two ways:
1) as a framework for belief with sets of rules included (as in a religion) and
2) a confidence or trust in a person, thing or concept.
Sometimes these are blended. The framework part being like the bones, insulation and walls of a house, the confidence/trust bit being like the furniture. Or something like that.
Sometimes they are not blended. Sometimes one might have all the framework in place – follow all the rules and guidelines within a given religion, yet not have the second part, the confidence/trust piece. They might go to church and yet not really believe in God, so to speak. Conversely, one might have all the confidence and trust available to hold within a human spirit and not abide by any type of framework.
In the course of this experience I’ve had with Down syndrome, I’ve felt one or the other rise to the surface, not both. They have not blended for me. Yet?
The framework for my belief system kept me from ending my life – and later, from packing up and running away – after the genetic counselor called me at work to tell me that the amniocentesis had tested positive for Trisomy 21. That’s all I wanted to do – just drive over a cliff. So much easier, I thought, than to actually grapple with decisions and prejudice against this syndrome, against disability, against God-knows-what-else-is-coming-my-way-FUCKIT!
That sounds so melodramatic.
It didn’t feel that way, let me tell you, on that Wednesday night, right about now. Two years ago. It was just pure, driven pain, as searing as it gets.
In the struggle that it was, faith was my tipping point – the Faith that I’ve grown up with has always said that suicide is just not a good idea – taking our lives into our own hands is ending an experience that isn’t ours to end. The Baha’i writings say much, much more on this and far more eloquently than my little paraphrased what-I-got-from-it. This is, like everything on this blog, just my gist.
The confidence/trust part helped me to synthesize everything that happened – pre-birth, birth and the firewalking I did throughout. Synthesis that I see will never be truly synthesized – it’s all part of the grand experience called My Life and it’s going to keep shifting and growing as long as I exist.
That piece has been crucial – the trust that this all is for something. There is a point to whatever. The confidence that I can change a part of the experience. Make it brighter, more in lines with my vision, I can change these things. I can take this Trisomy 21 and interpret it however I want. We all have that unique opportunity.
Want it to be a blessing? Okay! It is!
Want it to be a lodestone? No problem! One lodestone coming up!
Want it to be a source of your rising up to “save the world”? Yes! Rise on up!
Want it to be not that big a deal? You got it, sister! Not a big deal!
I believe we get what we want. What we focus on. What we put our energy to. What we believe in. Where our faith – as in, where our confidence and trust lies.
I take a deep breath, think some more.This faith thing, it’s a hard marriage sometimes between the one (framework) and the other (confidence and trust). And yet everything about faith is simple. Like a growing organism that starts with one cell and ends up something other-wordly
It’s faith that tells me to me treasure this moment
Because it’s going to change in an instant
It’ll be unique and precious, always, but it will be different. All moments are.
My confidence in the rightness of now makes some signs far more apparent than they once were
You know, things like, “just slow down already, Meriah” or “you’re getting bent out of shape about…what?”
And just…not even go some places.
Faith now is what leads me to take big, gulping breaths. They feel better, they really do. And I trust that feeling.
Faith makes me enjoy the small things – a broken truck in a redneck’s yard
Or clouds reflected in a puddle
A horse, so lovely and still
My neighbour’s rose, in bloom and in shadow.
The absurd too has it’s place, doesn’t it?!
And joy. Always joy, ever joy.
Same goes for gratitude. Real and true.
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.