Faith (and Down syndrome)

This is a re-post from last October. It remains relevant.
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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? 

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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.

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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.
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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.

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Meriah

is a deaf blogger, global nomad, tech-junkie, cat-lover, Trekkie, Celto-Teutonic-peasant-handed mom of 3 (one with Down syndrome and one gifted 2E).

She likes her coffee black and hot.


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13 Comments

  • Faith for me truly is, Hebrews 11:1, the assurance of things hoped for, the conviction of things not seen. I am the mother of a special needs child and everyday, I know her life was ordained by God and everday I know that no matter what happens here, we have assurance of the things we hope for, peace, grace, fulfillment of our purpose and to love and be loved…….

  • I like your idea of framework and confidence/trust. Because we ALL have it. Some may say they don't believe, but everybody believes in something, and it helps form us.

  • You are killing me with all the photos of Micah! In the sepia one with him at the beach, I feel like Zia resembles him a little. And also, love the purple painting. And, as always, thank you for sharing your innermost thoughts/feelings!

  • My child has Williams Syndrome. It shows up as Downs Syndrome on the amnio. We were also pushed to abort. My son is eight years old. He loves without conditions, he cracks me up with his zany sense of humor, and Williams is just a part of who he is. He is a joy because we think of him as a joy. You're exactly right; perceived reality IS reality. This was beautiful!

  • Hopping by today… I've not heard of the 31 for 21 group page, but it was nice to see my button there. :o) I'm not on FB or I would say hello over there too!

  • What happened to my comments? I don’t see them. I don’t get this Disqus thing.
    Lisa Lambert Nicholson aka Starrlife

I'm opinionated, friendly & chatty... I hope you are, too