Thursday, May 15, 2014

PWS Awareness Day 15: Pushing Through

Yesterday morning, a friend texted me a hilarious exchange that she and her husband had over pre-dawn coffee about my blog posts.  Not about the posts themselves, but the fact that I am managing to write them every day.  The exchange was so funny that I started cackling. When I tried to read it aloud to Paul, tears streamed down my face and I couldn't finish.

I really needed that laugh.  And I really needed the acknowledgment that I am posting every day.  The truth is, many nights I am so exhausted that I almost give up.  I do try to start early but I often have trouble settling on a topic.  I start two or three posts and abandon them or save them for later.   It's hard.

Two nights ago I spent an hour looking through pictures thinking I’d take a break from writing and just post pictures for a few days, but then returned to the post I’d started earlier about “the plan”.  As midnight approached and I still wasn’t done, I really wanted to give up.  Just like I wanted to give up three nights earlier when I was writing about the pervasiveness of food in our culture.  But then, and this sounds sappy, I realized I couldn’t.  I had to keep writing.  I had to post something.  Oscar lives with PWS every single day.  He doesn’t have the option to give up, to step away from the challenge.  So this is one small way I can honor him. 

That said, I am away at Lit Camp, a writer's conference in Calistoga, through Sunday where I'm meeting other writers as well as agents, editors, and publishers.  I'll be getting feedback on the first pages of my memoir about learning to cope with Oscar's disability and then helping him to do the same as his understanding of PWS grows.  It's exciting, and I'm nervous.  And the internet is spotty.  But, somehow I'm still going write these blog posts!

Here's Oscar, on his third attempt to climb to the top of the wall. He made it!


9 comments:

  1. You're halfway there! I love that you are pushing through. I heard a quote today and thought of you at Lit Camp--"You cannot create and analyze at the same time."

    Have a great time. Can't wait to read tomorrow's post.

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    1. I'm trying to do both -- biggest casualty seems to be sleep!

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  2. Hi there! My daughter, Naomi, is 4 years old and was diagnosed with PWS in October. I've SO been looking forward to your daily posts, thank you for sticking with it! My post-diagnosis-google-mania phase left me feeling like she was going to turn into some garbage-eating monster overnight. I can't tell you how helpful it is to have a glimpse into our future that is instead HOPEFUL! So thank you for your honesty and willingness to put it all out there. You guys have done an amazing job with Oscar. -Jen

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    1. Hi Jen, I'm so glad to hear from you. I completely relate to the post-diagnosis fear of Oscar turning into a garbage-eating monster. I've written a lot about that, though I am not sure any of that has landed here. Let me know if there's something you want to hear more about -- I am skipping all over as you've likely noticed!

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  3. I've loved reading here each day and am impressed by your discipline, too. Good luck at LitCamp -- it looks fantastic!

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    1. Thanks Elizabeth. It is beautiful and inspiring here and I think you would love it. Apply next year!!!

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  4. Your dedication to this daily blogging is amazing !.... and the quality of your writing is wonderful ! I know you are helping many who are following your posts.....And seeing another Oscar story and picture every day is great! G'Pa Bob

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    1. Thanks for reading Bob! And thanks for the pictures too -- as you know, most are yours!!

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  5. Keep going Mary. You will feel such a sense of satisfaction if you do and just don't worry so much about the "quality" - your writing is fantastic and always so interesting to read. Enjoy Lit Camp - I am very jealous!!

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