Hello Monday: Today Is A Miracle

This post was inspired by Lisa Leonard's series, Hello Monday. I love the idea behind it all, saying hello to a fresh week with optimism, bravery, and gusto. Thanks Lisa!

I've been thinking a lot about different perspectives when it comes to living your story when a rare disease is a piece of it. Your normal is your normal...and no one else's. My health is only but a tiny facet of the entire scope of my being. I know that 10 years into one journey can, and will, look extremely different than 30 years into it all. And still? And still we are all so unique, even under the realm umbrella of living with cystinosis. I've never felt like I would be me without it. I don't loathe it. Yes, sometimes things are difficult...but that is existing on this earth. Every single human has their mountain. The funny thing is, it isn't even a mountain to me any longer. I think I'm more hopeful about the future than I have ever been. My life isn't horrible because of a lovely little flaw in my DNA; it makes me who I am.  It doesn't have to dictate anything I do (it truly doesn't.) Looking back on where I've been over the years and what I've experienced, I wouldn't change anything; health wise or otherwise. There is a tremendous peace with the current place I'm in.

If I could say one thing to anyone out there waiting for a cure...for anything, whether it is cystinosis, or cancer, or cystic fibrosis, or MS, it would be this:

It is a beautiful thing to have hope. It is a fabulous notion to believe in the future. However, I don't ever want to cling so tightly to tomorrow that I forget to cherish and embrace this exact minute. Today is a miracle, for everything it is right now.


Hello Monday and hello cute pink bow flats that literally put a bounce in my step as I chase my girl at the park.

Hello windows open letting the fresh air slither into our home, bringing new ideas for anything and everything.

Hello to realizing your story is not over. Plot twists are not only beautiful in novels, but in real life as well.

Hello to allowing yourself to be smitten with sidewalk chalk with enthusiasm as if you've never seen it before.

Hello to hopscotch with Merida.

Hello to a new challenge I started a few days ago: 100 happy days. Super simple, for 100 days share a photo of something that makes you happy. Can be anything; new shoes, a blissful moment, a quote, a yummy meal, etc.  Join me! I'm on day 3 and it is already creating an urgency of chasing down happy. I love it!

Hello to Sookie's blossoming social skills. Lately when we are at the park she approached someone new, says, "Hi! I'm Sookie, I'm 4! What's your name? Want to play?" I think I can learn how to make new friends from her. (wink)

Hello to hopping on a swing and eating an ice cream sundae bigger than your head, when the universe feels wonky. Like it did last Thursday.

What are you saying hello to this week?

Wild & Precious

Yesterday I laughed as the person on the other line of the phone at the specialty pharmacy asked if I understood the storage requirements and dosing (of every waking hour) of the eye drops I've been using for the past 13 years. I painted my girl's toenails Cinderella blue while I gulped down coffee. I deep cleaned the downstairs bathroom and then we high tailed it to one of our favorite parks, as if our lives depended on it. I indulged in a sweet tea. I wore lavender skinny jeans. I soaked up the ear candy of Paul Simon and The Alabama Shakes. I let myself get lost in motherhood and sunshine. Time seemed to slip away hauntingly albeit seamlessly while at the park. To do list items faded in to the background as my girl lit up with newfound courage over mastery fresh playground skills. Later, I stayed up way too late with Roar watching Ultimate Warrior clips on YouTube and reliving my past of so many lifetimes ago when I was obsessed with wrestling. Yep. One of my deep, dark secrets is I was a 11 year old wrestling nerd girl. I might have even had trading cards. I was all about Shawn Michaels and Sting.

Today I made progress on baby steps forward on a few projects, including but not limited to, project improve myself a little bit each day. I ate lunch with Sookie on a pirate ship at a new park we decided to explore. We were mermaid pirates who jumped into the ocean, said hello to our dolphin and whale friends, and then hopped back onto our ship of antics. More often than not I get strange looks from people when I'm the mom on the park structures right along my girl. Oh well. We made it to ballet right on time, poofy tutu and pigtails of cascading red curls to boot.

Next Friday is the 19 1/2 year anniversary since my kidney transplant. I'm flabbergasted to be this close. I want to have an epic celebration in October for the 20th anniversary! This kidney has outlasted my wildest dreams and expectations. My friend Laura named her kidney Dobby and sometimes I wish I was that creative to come up with such a fitting name for mine. The best I could do was name mine after a (somewhat silly) stuffed kidney named Sydney. I think about it every day, what it takes to keep a body living, breathing, surviving...and then the thriving and doing more than simply existing stuff is all up to us. How we spend our time, what we put our focus in, where we channel our hearts, what we view on non-negotiable aspects of being human. What dreams we decide we really really want more than pounding hearts and words shouted from rooftops.

My crazy beautiful, messy, remarkable life. Grateful for it all. Happy to be alive.

Hello Monday: I Wrote A Happy Song For You

This post was inspired by Lisa Leonard's series, Hello Monday. I love the idea behind it all, saying hello to a fresh week with optimism, bravery, and gusto. Thanks Lisa!

Hello Monday!

Hello favorite flower boots I've had my eye on at Target, on sale finally! Woot!

Hello to changes. You know...like "Everything Is Awesome!" becoming Sookie's new song of choice to sing at the top of her lungs. All day. It is a marvelous new mantra I'm adopting. ;)

Hello April showers and actually now lots of sunshine in the forecast this week! Speaking of... I better clean my car out today. Ha!

Hello to throwing stuff in the crockpot and crossing your fingers you've inherited your dad's incredible knack for making delicious recipes up on a whim.

Hello to the brand new Oval Vintage gLocket from gLockets! I'm obsessed and have wore it every day since they arrived. Use code HAPPYGIRL at checkout for 20% off! Hint: Your mom would love one for Mother's Day.

Hello to staying up way too late last night to hustle and make stuff happen. Also, to be honest, to catch up on Nashville. Holy bananas. I haven't adored a show this much in a really long time. The music...oh the music.

(Speaking of music...) Hello to new music awakening creative juices flowing in my veins. Currently enveloping myself in the sounds of Emi Meyer and Twin Forks. Both so so SO fantastic.

Hello working hard at being better, but being gentle enough to know some fierce self love, recognizing what changes to put all your effort into...because the payoff? Blissful, peaceful, joy. All I want this year. Focusing on what I want to happen instead of what I don't want to happen. It is a beautiful thing.

What you are saying hello to this week? I'd love to hear all about it in the comments!

Blur Of Colors

It can be funny and somewhat frightening when you realize how immensely powerful your thoughts are; how they climb up toward majestic rainbows and puppies and cupcakes when you focus on the good, how quickly they spiral down when the negative overtakes everything you think about. It is a phenomenon I've always been in awe of, but lately really sinking in and soaking up the notion and how I can use it to better my own life.

The shocking beauty of the right now? The right now as of April 2014?
Being irresponsible for a few hours earlier this week and sneaking away from my "to dos" to take my girl on a date to The Lego Movie. Cue laughter and happy tears from me and thanking the universe for delivering when I'm feeling all out of sorts from my authentic self. Walking around the giant movie theater in the rain so my girl can throw a penny in the fountain and make a wish. Randomly stumbling across none other than the Mystery Machine itself. Going out for breakfast for dinner on a cozy rainy spring night. Play group at the gym. She is my angel who is a blur of colors. The moment of meeting my cousin's brand new baby and holding him for the first time. A Saturday when Rory is braiding my hair as I braid Sookie's. Dragon duels with Poppa at the toy store. Watching Sookie enthusiastically waving to strangers from the mall train. Kisses on my hand from her as I hold it up for a high five.

I want to hear about all the beauty in your world right now! Please share in the comments!

A Roaring Ballerina

She was cracking me up yesterday in her ballet ensemble ...and her black boots with the bows on the back. Roaring as she twirled, such an accurate yin and yang of her and everything she does. She teaches me so much, every day. I want to be a roaring ballerina when I grow up. A touch of fierceness and grace. Facing life with courage and spins.

March was utterly fantastic to us. We've been home for over a week from our grand adventure to Disneyland! I'm still adjusting. (And writing about it all.) Such a thrill to surprise our girl with something she has dreamed of for years now.

This morning she woke up, kissed Jack (our dog) then proudly proclaimed, "I'm going to make a burrito of sparkles!"

Also? This morning we played trick or treat with a Hello Kitty Easter basket from the Target dollar bin. I'm lucky I get to live in her world with her sometimes. I get tickled at the ever present reminder that you create your own reality. The power of your thoughts is phenomenal.

Hope your Thursday includes sparkle burritos!

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