Thursday, November 1, 2012


I feel a vague unease nearly every single day. Jumbled, confused, unhealthy. I know that it has everything to do with change and unrest, and somewhat to do with Sophie's seizures that creep up and over her two medications. I feel blurry and strong only in my will to push it away, to get through.

Is ill-sorted a word? Is it an adjective or a state of being?

As my boys sorted the grotesque amounts of candy that they got last night, I didn't have to force a smile, as it wasn't that long ago that I'd sat with my own sister on the floor of our living room and gone through the candy, excitedly. It was a long time ago, though. It was several lifetimes, ago, I think -- a time of literal sweetness and utter innocence, a childhood ordered and neat.

I talk with other parents of kids with disabilities, and we nod our heads at this time before, before it happened, before we became who we are. I know at this half-way point in my century, I feel a near-constant yearning, not so much for the past, but for the before. It's a yearning to remember and to feel like that, like I did before. It takes enormous concentration to do otherwise, to be mindful of now, of the present, to be informed by what is. I can sort out the future and feel no fear in the un-knowing, but the present and the past are tangled, both cloying and seductive,  ill-sorted.


  1. I seem to be focusing these days on a very small window of time in my life, a before time, as you say. I don't know if this is good or bad, but it's human. It goes, in my mind, under the category of "it is what it is." Nothing more.

  2. I don't so much wish for the "before" as I do for a better fit to the "now." The world is not set up for our children or the lives we lead.

  3. sigh... i know about this "before we became who we are" thing, in a different way. i think "ill-sorted" is an apt phrase for what you are describing.

  4. I thought of you inexplicably in the very middle of the night, Elizabeth. I woke up, and there you were. So I'm just here to say hello and to give you a cyber hug and to tell you that you and Sophie are in my prayers - last night and right now.

    1. Michelle, that made me breathe in, sharply. Thank you for telling me, and I am grateful for your thoughts and prayers.

  5. My question, all too often, is who the f*%k is responsible for this sorting, anyway?

  6. If ill-sorted is not a word, then, make it yours, in the same way you have faced up to this "now". I can empathise with your "before we became who we are".

    Greetings from London.

  7. I grew up in a family shaken and shattered by illness. Therefore, I have no longing for the past or memories of a childhood neat and ordered. But it is a testament to the power of your words that I now understand you do.

    Breathing in vague uneasiness and breathing out peace. For you.

  8. I couldn't agree more with your last paragraph. Well said.

  9. I see my life in sections. Before I gave up my son for adoption. The years of grief after. My marriage. The chaos after my marriage ended. Living with my mother. And there's the sweet bridge in there of the man who loves me. I think it's human nature to want ot sort it in some way. And sometimes we can't really. One part jumbles with another.

  10. Sigh--I think of my "before" time as well. In our case our child with special needs was the last child to arrive (all were adopted into our family). Those years with just her healthy brothers now seem a distance, innocent time. I don't want to go back there; I definitely do not want her NOT to be here. But it still brings a sigh and lots of emotions to remember how it was, once, in our home and our hearts.


  11. i feel this deeply. love your closing line... so incredible.



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