The Edge of Darkness

1 Feb

  “When we walk to the edge of all the light we have and take the step into the darkness of the unknown, we must believe that one of two things will happen. There will be something solid for us to stand on or we will be taught to fly.Patrick Overton

I’ve been staring at this screen for what seems to be an interminable time, reading those words over and over again and yet unable to will myself to write down anything. In the last hour, I must have started this paragraph a hundred times, editing and erasing with cruel meticulousness, only to start all over again with a few bumbling, awkward words. I feel Writer’s Block setting in, its insidious tentacle wrapping itself around my head and my heart, blotting everything with its darkness. Inside, I am bleeding and I cannot write down why.

But I will try. I need to unburden my heart of this heaviness. I have not cried since the day it started. I promised myself that I will not. I will not let this defeat us.

These last few weeks have been particularly difficult for our family as we headed into the storm of Alphonse’s rage and obsessions. It’s difficult having to live like this, like we’re treading on eggshells all the time, holding our breath and watching over our shoulders. Nothing in our world is right. Nothing in our world is “normal.” We live from second to second, moving in slow motion, weighing our words and watching our actions. We examine everything before and after. We get caught up in everything. We smile. We pretend.

I worry myself sick at night thinking of what to do for him. The burden is heaviest on me, as everyone looks to me for answers. From Alphonse’s diet to activities to medications, I am the go-to girl in the house when it comes to his needs. I am the encyclopedia of Alphonse’s life, the repository of all his memories. And as fearful and as anxious as I can get, I cannot let on that I do not have the answers all the time. That like everyone else, I work on blind assumptions and second guesses.

And still I move, heading off blindly into some direction that I hope will give us some answers, some respite, some peace. The focus on this keeps me sane. Changing his schedule, modifying his diet, tweaking his long list of supplements and medications, removing and putting back things- these things I do to breathe a semblance of normal air. I make him books to read- big laminated poster cards that tell him over and over again that he is happy and that he is loved. I read to him every single time I can catch him unfettered and relaxed, conditioning him to listen to the words my heart aches to tell him. I pray over him and hold his hand in his sleep, whispering him to come back to us, to find his way back to us through the haze of his anger and the smog of his confusion. And I wait patiently, calmly, hopefully, amidst the din and noise of his screams and fury.

We have stepped back into the darkness of autism.


12 Responses to “The Edge of Darkness”

  1. Candy February 1, 2011 at 12:06 pm #

    Oh Pinky, to endure this day by day, hour by hour, must be exhausting. I applaud your patience and pray that there will be “light” soon for Alphonse. With autism, it seems to be 2 steps forward, 1 step backwards. Sometimes it’s 1 step forward, 2 steps backwards. But keep going anyway. Sending you hugs from across the world.

    • Kittymama February 3, 2011 at 12:56 am #

      Things are tough these days but yes, we’ll keep going. Thank you for the hugs, Candy. 🙂

  2. Lyra February 1, 2011 at 2:36 pm #

    I’m at a loss for words, but sending you my hugs and prayers that tomorrow will be a better day.

    • Kittymama February 3, 2011 at 12:57 am #

      Thank you so much, Lyra. I really appreciate your prayers. 🙂

  3. leira February 1, 2011 at 11:27 pm #

    Mare here’s a big hug!! first of all let me just tell you that this is not your fault and you are doing your best… i know that this will soon blow over… again Mare here’s a big hug from me to you

    • Kittymama February 3, 2011 at 12:57 am #

      Thanks, Mare. 🙂

  4. Indiana Lori February 2, 2011 at 4:38 am #

    Hugs from my end of the world as well. The second I uttered the words, “Sara is so much better. It’s an entirely different world at our house.”…well you can guess what happened. Frustrated, stubborn, completely unpredictable Sara returned. Ours isn’t nearly as difficult as Autism, but I feel your exhaustion. Everyone looks to Momma for answers, as if we hold magical powers. The ice storms have started…maybe she’s reacting to the big change in her schedule? Who knows. My best wishes to you and to A.

  5. Indiana Lori February 2, 2011 at 4:39 am #

    By the way, I’ve been waiting for a sign that I should write our story with Sara, but every time I sit to write it…I get writer’s block as well! I erase. I start over. I retitle it. One of these days, I’m going to get the courage that you have!

    • Kittymama February 3, 2011 at 1:07 am #

      Thank you, Lori. Our lives are difficult now but I have not lost hope that things will get better eventually. We just keep doing what we have to do, and if they’re not good enough, we keep trying harder. I hope things are going well for your whole family, too.
      I can’t wait to read what you write of your precious Sara. You have often moved me to different depths of emotions with your wonderful writing; I’m sure that this one will be just the same. Keep writing it, Lori!

  6. S February 11, 2011 at 11:14 am #

    Hi Kittymama:
    I just left a suggestion in response to your 24 Jan post. Here’s another: Have you been talking with Alphonse’s doc about adjusting some of his medications?
    Can you write a post about his medications and maybe some suggestion will present itself?
    All best, and many supportive thoughts and wishes for you. S

    • Kittymama February 12, 2011 at 6:02 am #

      We’ve seen his doctor and she’s already prescribed new meds to add to his old ones. As for centrally-acting drugs, my son is on Risperidone, and now, Clonidine. We’re still adjusting dosages, trying to find a balance that will ease him of his aggression. Aside from this, we’re investigating on other possible causes of this sudden escalation of negative behaviors. I hope we find some answers really soon. And thank you for your interest and support. If you think of any suggestion that might help us, please feel free to share them. I really do appreciate the help. 🙂

  7. Patrick Overton February 16, 2011 at 11:56 am #

    You were not wasting your time staring at the screen. Words are guides to show us the way to ourselves. They are the sigh we need to survive; the possibility we need to believe in order to continue; the assurance we need to make it to the next moment with hope.

    I do not know your story. I do not know your challenge. But I know your heart longs for knowing the way you must travel to help Alphonse navigate the silence and find his way back to you.

    I do not know how you found my words or why they have become your guide but I pray they continue to help you find your way. It is ok to sit and stare. It is ok to have writers block. That doesn’t mean you don’t feel. It just means you need to rest.

    Take care of yourself – if you don’t do that, you won’t be able to take care of anyone else.

    Patrick Overton

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