17 May 2013

storms make trees take deeper roots

Photography by Bluebird pictures
Dress by Tashi and Cataleya
Hairpiece by Lizzapooh

Challenge topic for today is something difficult about your "lot in life" and how you're working to overcome it.

Melissa Etheridge has this belief that we all chose our hardships before we are born. No matter what excruciating adventure we go through in life, she has a theory we pick it when we are elsewhere because we know that path will take us to a place where we will learn the most. She talked about this notion at length a few months ago on a Joe Rogan podcast. I listened fascinated, and forever changed. At first this idea turned my whole world upside down and inside out. Then, the more I turned it around and around, and held it close to my heart, I realized it makes sense to me.

Maybe I did choose cystinosis because I knew it would teach me so much.

I'm learning the more heartbreak you trudge through, the sweeter the happy is, the more pain you live through, the more bliss you squeeze from the joy. Chalk it up to getting closer and closer to turning 30 (I am 3 months away...and cannot wait!) and wanting to honor the memory and tremendous lives of those of my friends with cystinosis who were never able to celebrate that milestone of a birthday.

I am so lucky our girl has a laugh that gives me the courage of a lion.

11 May 2013

10 words

Sell yourself in 10 words or less is today's challenge prompt.

This is an old picture from July 2011. I love that Sarah Dawson caught this moment between us.

Sell myself in 10 words or less? Okay...

Bold warrior (momma) spreading love, conquering odds, & living life in color.

How would you sell yourself in 10 words or less?

Happy Saturday!


09 May 2013

a moment.

Today's prompt for the blog every day in may challenge is a moment in your day. The above photo is from a few days ago. I was sitting out in the backyard with little miss S after enjoying a delicious picnic under the shade of our new trees. (Everything to do with this house is still new to me and I love it!) I felt randomly inspired to spell words with the flowers for a little learning opportunity for our girl, and a creative outlet for me. There has been so much heartbreak around people dear to me these past few months, I want to choose love every single day and remember that love does things. It moves mountains and hugs someone and cries with them when there is simply nothing else to be done. I want to continue to walk in love, even when it is uncomfortable and challenging and not always the easiest choice to go with. It is so true that whatever obstacles you are facing in life you can always choose to...throw more love at it.


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? 

03 May 2013

she has trouble acting normal when she's nervous

You have no idea how long I've been waiting to use that subject line for a blog post. (wink) It is day 3 of blog every day in May, and...I'm already behind. Ha. It is all good. I will catch up tomorrow because I'm particularly and thrilled to tackle the idea prompt for yesterday that I missed. (It is to educate people on something you know a lot about.)

Today's idea prompt is, things that make you uncomfortable. OH gosh. So much makes me uncomfortable. Sometimes I'm a little bit of a mess.

I can definitely be an incredibly shy person, especially around people I don't know. I've come to realize over the last several years, that the core of my personality is having this intense need to be heard, to be understood. I feel like the older I get, the more I simply want to be heard. Even if you don't like me, if you've heard my story, that is kind of all I concern myself with. I'm exhausted so I have no idea if this makes sense. Ha. Perhaps maybe it does to someone else though. My great grandma (I was named after her) was an extremely blunt woman, at a time when it wasn't very socially acceptable to be. I feel like I'm more comfortable with being open, the older I get. I tend to get nervous when people skim the surface with each other and don't want to delve deeper into the real stuff.

I adore this quote from Glennon Melton in Carry On Warrior: Thoughts on Life Unarmed.

"I started writing a few months later, so that I could tell my truth recklessly to more people. 
After reading a few of my essays, my dad, Bubba, called and said, 
"Glennon. Don't you think there are some things you should take to the grave?" 
I thought hard for a moment and said, "No, I really don't. That sounds horrible to me. I don't want to take anything to the grave. I want to die used up and emptied out. 
I don't want to carry around anything that I don't have to. I want to travel light."

I suppose the simple answer to the "what makes you uncomfortable?" prompt is that I am uncomfortable, nervous even, when I'm not expressing myself, when I'm not writing, when I'm not being messy and truthful and open about life.

01 May 2013

250 words

Today marks the first day of May and the beginning of the blog every day in may challenge over at story of my life blog. I'm nervous and excited to be participating. :)

The topic for today is: The story of my life in 250 words or less.

Let's do it.


at 2 years old with my momma

In the face of being diagnosed with a rare genetic condition at 16 months of age, I chose joy...even then. My parents devoted their lives to making sure my story would be one with miles of laughter. I had an incredibly happy childhood that consisted of music and dancing, medications every 6 hours, vomiting and hospitalizations. Doctors predicted I would not live to see my 10th birthday, due to cystinosis. When I was 11, my momma gave me life for a second time by donating her kidney to me. Heath wise, my junior high and high school years were some of the most challenging of my days. I powered through and achieved a life long dream of graduating from college in 2008. Earning my Bachelor's Degree in Human Development with a Child Life Emphasis was a huge victory in my story. 

In 2006, my life changed forever when I lost my only sibling very unexpectedly when she was 15. I then met the love of my life, all in the span of 6 months. I learned from that roller coaster of a year that you cannot truly appreciate happiness if you have not felt unimaginable loss.

When I was 26 I went through an extremely high risk pregnancy with our miracle girl. There are only about nine other women in the world who have cystinosis and have lived through a pregnancy. Sookie Sierra, came into the world on February 1st, 2010 and ever since, has been showing me how much fun it is to break the rules.

"I think life chose me, after all." 
(Dar Williams; After All)

our miracle family
"our happy is too loud"

Whew! I did it with one word to spare.
I would love to hear your condensed life stories in the comments, or link to your blog post if you are joining in on this fun challenge!

Happy May and embrace today for the gift that it is.