January

January1

I’m having an interesting time with January so far. I’ve been going nonstop from Halloween through the end of 2013 — holidays, snow days, presents, clutter cleaning, cards, lights, tree, the ambition to do “holiday related” activities; the ball drop at midnight. It was a big rush to New Years.

The self care that I’ve written about before got pushed way to the back burner. I just put my head down and GOT THINGS DONE. Writing is very therapeutic for me, but even that  went straight to the bottom of the list. I actually felt guilty glancing over at my stack of books about writing. I’ve been working on a memoir about the past two years and, if it gets finished before 2045, it will be a miracle.

So, with all the craziness of October-December, I slid into January needing a complete recharge. It was hard for me to get back into writing right off the bat, but I cleaned out the clutter in the study, which is always a precursor to SOMETHING happening. And then I sat down with a few writer friends last week and, wow, did that feel good. It’s funny how some of us completely ignored our writing during the holidays, while others were actually productive. The productivity of others helped ignite that fire within me again. The words of encouragement from friends “You have to finish this book” also moved me forward.

But there’s something else stopping me too. When I write about the past two years, I want so badly to capture how I initially felt about Emmy’s diagnosis, how that feeling sat with me for a good six months and was only chipped away at little by little, and how that feeling is so far from what I feel today. As I move away from that feeling, it’s harder for me to go back where. Was I really devastated by this diagnosis? Really?? It’s hard for me to believe looking at the sweet, funny, good-natured, lovely daughter that Emmy is today. When we sit down at the breakfast table every morning, she gives the biggest, brightest smile and announces what she’s eating. I’ve never seen anyone that happy in the morning–ever! “Yogurt!” she declares, holding it up for me to see. Was I really upset for 6 months about Williams syndrome? Really?? It’s hard for me to even believe it myself.

In order to write about it accurately, I have to go back there in my mind. I somehow have to put aside the smiling cutie pie that I see in front of me and sink back into that mindset. Because even though I’ve moved on from that early time and changed my views on Williams syndrome by 180 degrees, I still feel like the story is inside of me. It’s just sitting there, waiting to come out. It’s been sitting there for 2 years now. I’ve changed, but the story is still heavy on my mind.

It’s the story of how I thought I would never smile again. It’s the story of how I bought every book I could find about having a child with special needs and read them through tears thinking, Is this really happening to me? It’s the story of how I thought my marriage was going to crumble because that’s just what happens, right? And it’s the story about how it was so hard to connect with Emmy for 6 months because I felt as if she were underwater. There was a barrier between my daughter and me and, during one Early Intervention meeting, I broke down sobbing and said, “I feel like she’s underwater. I feel like there’s a veil there, and I can’t break through. I don’t know how to connect with my own daughter.”

Those feelings have completely dissipated now, and the child that was once “underwater” now runs into my arms and says “Huggie!” But that story is still sitting there, and I remember it well.

The thing about writing memoir, though, is that it can hurt to go back there. If I were writing fiction, I don’t think I’d end up in tears just thinking about Chapter 2. And because I don’t want to feel that hurt again, it keeps me from sitting down and writing. Though if I don’t write, I still always think about writing, and that just drive me nuts…

I haven’t written fiction in a long time. I also haven’t read fiction in a long time (except for my friends’ pieces), though I’m starting to get back into it now. Memoir and personal essays really speak to me. A couple years ago, I wrote a very painful, true piece for a writing group. It was difficult to write but, boy, did it feel good to get it out. At the end of the night, we were all filing out into the parking lot, and this woman held me back to say that my piece really touched her because it was so raw and it brought her right back to things she’d experienced as well. That’s when I’m writing at my best–when I can go to that place and not sugarcoat. To me, the words don’t matter as much as the feeling behind it. I can always go back and change the words. But I can only revisit those feelings so many times before I can’t go there anymore. Or, in Emmy’s case, before I become too far removed from those early months and completely forget the pain that I was in.

Emmy will be 3 in July. Can I finish this memoir before then? Before I completely and utterly forget what it was like when my daughter was “underwater”? One of my writing friends suggested keeping a daily word count. That way I won’t get bogged down in revising Chapter 1 (as I’ve already done 100 times…). I just need to keep moving forward–get the story off my chest. Get it DOWN on paper. And, no matter where it goes from there, I will have gotten it out of me. For me, that is therapy.

6 thoughts on “January

  1. Hi – I was lucky enough to come across your blog today and it’s fabulous.

    I think you’re right about just writing – Get yourself back into that feeling, let yourself live it for a short while and then write it, without care of spelling, punctuation or any quality – Put the emotion on the page and then come back later to turn it in to writing 🙂

    My fiance’s daughter has Williams Syndrome, too, and despite not having known her her whole life I can understand how you went through the way you felt because any diagnosis is hard, and knowing some of the health problems associated with Williams isn’t a whole lot of fun – But once the diagnosis turns into an amazing child it doesn’t matter so much anymore 🙂 I often say to my fiance how amazing it is to see how unerringly happy a Williams child is, almost all of the time, it’s magical

  2. Your blog is my vice. I feel like I’m still living your ‘chapter 1’ our sweet boy WS is 7 mths and I still ache at all he has encountered, thank you for giving me light. You have inspired me to journal our journey while my feelings are still so raw.

    • Amayle,
      I’m so glad you reached out! And I’m happy to hear that you’re journaling about your experiences. I didn’t start writing about Williams syndrome until Emmy was about 1.5 years old, and I regret not keeping a journal in the beginning. I feel like the first year was a blur. Our geneticist actually told us that the first year would be the hardest and, so far, she’s right. If you ever have any questions, don’t hesitate to email me at: williamssyndromesmile@gmail.com. Best of luck with your precious boy! 🙂
      Vanessa

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