People who equate truth with fact are missing the point.

It’s a Whole New World, Baby

I’ve been reading the weirdest stuff lately. Not weird, really, just weird for me. POW accounts and memoirs by survivors of violent crimes, tales of child abuse and war, and other tragic stories that are typically far too painful for me to stomach.

In general, I figure the depths of human depravity are what they are and me having a head full of their horrors does nothing to alleviate anyone’s suffering, so why all this reading? For months now, I’ve been reading my face off, immersed in this stuff. My husband was perplexed, asking my why in the world I had abandoned my usual fare in favor of studying (as Kurtz would say), “the horror, the horror.”

Why? I don’t exactly know, but as an avid armchair Freud, I can hazard a guess.

I’m trying to get my feet under me. I’m trying to regain a perspective that lets me live my life, this life that is the only one I have to live, where things are so unbearably fucking unfair.

Because things are unfair. Carter is mentally ill, and that’s unfair. My older kids went to live with their dad, propelled by an anger so hot they hardly glance back at the mom, step-dad, and brothers they left behind, and that’s unfair. We’re crippled financially, and that’s unfair. Our outrageously expensive health insurance denies some of the therapies that Carter urgently needs, and that’s unfair. Our lives have narrowed because Carter’s needs are emotionally overwhelming for Brian and me, and that’s unfair.

No doubt about it; there is much that is unfair.

And nobody ever survived extraordinary circumstances* by wailing endlessly about unfairness. Immaculee Ilibagiza survived the Rwandan holocaust in 1993 by hiding in a tiny bathroom with several other women. They sat, crowded, completely still and silent, with barely enough food and water to sustain them, for weeks. She survived by praying constantly, not by ranting about the unfairness of it all.

I haven’t quite shifted my perspective yet. Today, when I got a letter from our insurance company informing me that Carter has been denied for both occupational and physical therapies** (therapies that everyone on his treatment team agrees he needs very badly), I wanted to curl up under the bed and cry my face off.

Honestly, I don’t ever want to be too accepting. If some of us don’t rail against the unfairness of it all, how will the insurance companies know that they’re acting like assholes?

There is also this rebellious streak in me. Early on, when we were flailing in the dark, trying and mostly failing to find help for our troubled little boy, I heard over and over, “You have to make the best of it!” There are dozens of versions of that, of course: be grateful for what you have, count your blessings, at least you’re not dealing with (fill in the blank), on and on.

I don’t believe that any of us has to do that. I’m trying to find acceptance now because I’m able to do that, and I’m only able to do that because I grieved and raged and struggled. I felt all those painful feelings and I will continue to feel them. Keeping a stiff upper lip? The only purpose of that is making other people feel comfortable.

No, I have no use for false bravado. I’m looking for something different; something deep and genuine. Carter is stable now, and in this pause, this break in the storm, I need to heal the parts of me that have been wounded in the past 8 1/2 years.

Be patient with me. It turns out that building a new world view is a time consuming endeavor!

*I’m not comparing anything we’ve experienced to the horrors endured by POWs, violent crime victims, or any of the other things I’ve read about lately except in the most metaphorical way. Some things in life can only be understood by those who have experienced them, and I would never presume to understand those things through which I have not lived.

**Our insurance company covers OT and PT if the qualifying diagnosis is (or is caused by) illness, injury, or disease. Since Carter’s injury (probable perinatal stroke) is not verifiable, he doesn’t qualify. Our insurance doesn’t cover developmental delay at all.

This post originally appeared at Hopeful Parents.

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6 comments to It’s a Whole New World, Baby

  • Life is inherently unfair. Once you come to terms with the fact that you are neither entitled to nor are going experience *fairness*, you will be able to regroup and start dealing with the impossible.

    I am now raising my 4th Bipolar child. It is truly difficult, scary, and sometimes downright exhausting. There are moments of pure joy and times when I am sure I can’t take another step. I do it anyway. You can, too. {{{Hugs}}}
    GB’s Mom recently posted..Seasons Greetings

  • Hi, Adrienne,

    I totally understand that compulsion to read about disasters when that’s how you’re feeling inside. And for you? I have all the patience in the world. You know that you are one of my blogging heroines, my inspiration. The first time I ever read a post of yours, it literally took my breath away. You were so honest and so brave and so generous in exposing your soul for all to see. Deep and genuine is who you are. And I hope the healing keeps proceeding apace. And know that I am thinking of you, even when you’re in a radio silence period. I carry you in my heart.
    Varda (SquashedMom) recently posted..Stream of Consciousness Sunday- Surgery on my Mind

  • Adrienne, I am not surprised at what you’re reading at all. Raising challenging kids and feeling like we’re at the mercy of the professionals and other people’s opinions is a major stressor. I saw a documentary from National Geographic recently called Stress: Portrait of a Killer, and it said mothers of special needs kids are just about the most stressed out group in society. Our stress hormones and PTSD rates rival those of POWs and vets. So, you’re not crazy. And I’m right here with you. Happy to bear with you however long it takes for you to do the “in flight repairs” you’re searching for. I actually started a new FB support group page for that reason. Would love to see you there: http://www.facebook.com/pages/Embrace-the-Crazy-Where-Special-Needs-Moms-Thrive-Together/132422960153021

    Big hugs, girl!
    Laurie @mylivingpower recently posted..Your Christmas Break Survival Guide

  • Oh friend. I have no words for you but to let you know you and your family have been in my thoughts lately a lot. I can’t even put myself in your shoes because I wouldn’t know where to begin.

    I just want you to know that out there, somewhere beyond the “horror”, you have a friend.

    hugs.
    Katie recently posted..Superfudge and other Christmas Miracles

  • It’s absolutely, completely, awfully unfair and I’m sorry.

  • It is unfair. It sucks. It’s never ending. But somehow, something makes me get up in the morning and hope today will be better.

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