It’s Not All Rainbows and Unicorns

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7 Responses

  1. Shivaun says:

    The word “suck” is really overused in contemporary writing; it is demeaning (to the person/or condition/or state of being one is referring to…a living/breathing human being). It is also demeaning to the reader. You are such an intensely intelligent woman who has a great love for the written word and English language–why stoop to slang?
    I just turn off when I read that word.

    Your writing, your child, the world of disability you are so intelligently writing about deserves better.

  2. Shivaun – I agree with the over used part and I know I’ve been guilty of that with me beating the drum that seizures suck. And sure, it’s slang. But there just are times (for me) that call for cussing and I’m sure not going to write something stronger than that. I want grit and ugly and pain to be on the edges or even center when necessary. Sounds like I need to do a writing exercise for word choice but I won’t put tidy and intelligent where I don’t feel like it belongs.

    And now let me throw it out to my readers (so I don’t have to do all the work)- Fill in the blank with some dirt. Seizures ______.

    I appreciate your feedback (especially as one of my strongest encouragers) and hope you can squint through that word to hear the bigger picture.

  3. the reason I keep coming back to your blog is I find your writing to be honest and balanced. I can’t stand the “rosy” blogs where everything about life is wonderful or the ones where everything “sucks”. It is what it is and I DO think we are making progress (too slow certainly BUT progress) I can remember when children with disabilities were hidden away–I can tell an interesting story about that from one of my earliest memories. Do we need to work on all of this? ABSOLUTELY! But let’s do it with a positive and welcoming attitude. I read too many accusatory statements and they really turn me off.

    • Robin – Thanks for this feedback. Yes, I also think it’s important to note how far we’ve come and celebrate that too. It’s good to know you’ve heard the balance in my writing.


  4. Christine Haskins says:

    I love your response and the fact that we’re having this conversation. I actually feel like what you are doing IS giving the balance. I actually feel like the world wants my child to be “fine” (I have a bipolar teen) and he just isn’t. It feels like her wish is that we just make everyone see our children as “fine” and I really want the acknowledgement (which you provide) that he sometimes isn’t fine. And the world will never totally accommodate that. Social interactions just aren’t always the same and the challenges he has with school and goals just are different. They are. Yes, he is beautiful, unique, creative, awesome and amazing. And his bi-polar is part of WHO HE IS. I can’t separate that part out of him. But sometimes it means that he has additional challenges than all of his peers.

    And I’m sorry to your other reader, but that DOES suck, sometimes. I can talk about the rational side of it: it limits his potential, it diminishes his friendships, it makes him harder to parent, it is very expensive to provide the support, which insurance provides little of. Those are the rational implications. But the emotional response is that it “sucks.”

    I feel this even more strongly because mental illnesses have such a stigma. Unlike many of your children, the world doesn’t see my child’s issues. He looks fine and ordinary. So I look for places where I can read, vent and celebrate his differences. If I needed a reminder of how this isn’t an issue, I would just turn to real life, where that is what is expected of him and me.

    (I also acknowledge that some people who read this blog may know me, don’t know this about me or my son. I protect his privacy and dignity above all else, so I don’t have other places to talk about this except on private blogs. I can’t even make comments on FB posts, because they show up on my general feed.)

    • Christine – Yes, mental illness is another very different discussion. That’s such a good point that you can’t separate that out like I can do with Aidan’s body function. And yes, invisible disabilities like Autism and Bipolar or PTSD comes with that extra weird sense of having to conform. And here in your comments I hear you both celebrating him and acknowledging toe challenges.

      Thanks for pointing out the rational and emotional responses – another exercise in balance. Keep talking b/c you’re absolutely right about the stigma and in order to support families we need to fully value people with mental illnesses.

      You are fabulous!

  5. And this from my Aunt Tory – Heather, you are a gift to all of us. I am so grateful that you are in my life. I love reading your blogs…I cry, laugh and most importantly I learn. Please don’t be cautious with what you write – it’s real and it is balanced.

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