06 May 2013

what i do.

A few minutes ago, I took a photo of the chicken salad and book (The Immortal Life of Henrietta Lacks) sitting on our kitchen counter. I wanted to remember how many pieces of myself were conflicted as I put away groceries and struggled with wanting to crawl up beside little miss S and snuggle her, while the rest of my responsibilities and the world simply slipped away. I went over the fact my seventeen year old self felt compelled to devour every last bite of the chicken salad, while reading through the fascinating story held within the pages. I thought about how the wife in me wants to clean the house, make R a lunch to take to work tomorrow, and create a love letter to leave for him when he gets home in a few hours, around 2 a.m. I contemplated what I tend to do at times like these, when the world feels like it is spinning madly away from me and I feel like I'm standing in the corner, holding up my "WTF?!?!?" sign. When I feel like that I eat massive amounts of sour patch kids (the new berry ones? My ultimate downfall. ;), I fall into the vortex of Counting Crows lyrics and the happy goosebumps Adam Durtiz will always and forever give me. I write and write until my words are right up against everything else and I feel capable. I dive deep into (online) retail therapy. I drink too much Diet Coke and get drunk on adrenaline, Alice Hoffman, Almost Famous, and The L Word. Somehow I will find a way to appease all these facets of myself.

Which is funny, because the prompt for today, Day 6 of Blog Every Day in May, is "If you couldn't answer with your job, how would you answer the question 'what do you do?'"

Today, like many days lately, was a day when I did a little bit of everything. I had a story party with this wild girl who makes me live harder. We had a breakfast picnic on the back patio, complete with scrambled eggs, broccoli, cheese, and hash browns. I took pills. I did dishes. I picked up clutter. I put in eye drops. I did laundry. I danced in the kitchen with her, twirling like we could change the world, together. I mailed cystinosis pens and key fobs to Maryland for a fundraiser on Saturday. I mailed many many many gLockets packages. I had a mini date with Rory outside the office, where we took a deep breath and caught each other up on the insanity of everything. I went grocery shopping. I sat in my car, enjoying my burrito while the rain poured down outside.

On any given day, I do this and more. I'm content when I'm juggling a million different things. Chaos fuels me and cements me in the now. I crave it. I take a lot of pills. I was on the board of directors of the Cystinosis Research Network for several years and as a result, I reach out and assist people in the cystinosis community. Every day I'm emailing someone to offer a hand, whether it is in the form of fundraising suggestions and/or items, advice on how to fight against muscle wasting, tips to combat the extreme nausea associated with cystagon, etc. I pride myself on showing little miss S how beautiful the world is. I want her to know that and seek it, always. I do a lot of work for our two businesses, gLockets and Appdicted. Social media accounts, promotion, customer service emails, post office runs, press releases, editing/proofreading...you name it, I do what I can. Living life alongside an entrepreneur has been such an unexpected adventure and learning lesson. I love it dearly. I write, sometimes on this blog, sometimes simple letters to Sook, sometimes for my memoir. I take words and do my best to capture this crazy beautiful life and what I want to hold tight. I vomit a lot from medication, it is part of my normal. I play "dinosaur dance class" with our girl; a game where you roar then twirl. (I think this is how I want to teach her to approach any difficulty in life. ;) I put eye drops in my eyes a lot too, the recommended dosage is every hour I'm awake (to best stay on top of the crystal damage and prevent blindness) so when we are home I set our oven timer for every 25 minutes or so to give myself the best chance of getting at least 10 doses in a day.

Oh yes! Sometimes I remember to feed the fish.

What do you do? 


  1. So happy to read your posts and thanks for the lovely comment. I like that you write love letters and story party sounds fun.

  2. I'm like you, I feed off the organized chaos of juggling multiple tasks. But that's what we do and we feel good about it!

    Loved reading this post.

  3. What a fun post!! I could picture it all as I read.

    Thanks for stopping by and reading my post as well.

    God's Blessings

  4. I love this post and how you vividly capture the things you do. I could picture your breakfast picnic and twirling around the kitchen. I love that!

    And thanks for stopping by!

  5. What a lovely post to read to start off my Wednesday morning. Have recently found your blog and what a find it is :) Have a lovely day!

  6. I work at a job I don't necessarily love...but am thankful for...

    Loved your post!


  7. I just found your blog while surfing and could not be happier. Your writing is clearly therapy and it is gorgeous. I cant wait to envelopenmy soul in more. You have inspired me to begin my story again.

  8. I just found your blog while surfing and could not be happier. Your writing is clearly therapy and it is gorgeous. I cant wait to envelopenmy soul in more. You have inspired me to begin my story again.