26 April 2013

life is in the details.

I cry every time I braid her hair, even if other people are around and a few tears sneak down my cheeks. It is a little victory in this very big mountain of our story. It is a daily thing to celebrate because my hands are strong. Cystinosis can cause muscle wasting and the hands are often the hardest hit. The buildup of the cystine crystals in the cell causes it to burst and die. When she was a baby, it was a (very real) fear of mine (no matter how silly) that my hands would be too weak to braid her hair by the time it was long enough. I'm the first to admit this is a small thing to be concerned about up against everything else in our lives, however it merits documentation and I want to cherish it now.

My dear friend reminded me that even when I come to that place where my hands can't do certain things, there will still be plenty to be excited about. (Thank you Jess.)

This week has found me dehydrated, weak, and dizzy because of the ever present stomach issues. Little Miss S made me laugh like a banshee when she oh so sweetly questioned, "Mommy, is your tummy making mad choices?" (I do my best to make a huge emphasis on the choices she makes, as opposed to simply telling her to be good. Because haven't we all made some less than stellar choices in our lives at some point or another? And we hope and pray our entire character isn't labeled as "good" or "bad" based on those choices.) Anyhow, yes...my stomach has been making some mad choices this week. However, I felt a huge sigh of relief when I received my lab results today and my creatine (kidney function) is measuring stable despite all of it! Huge blessing.

I mailed a letter today that is a tangible symbol of a brand of hope that triumphs everything else. On the drive back home, white blossoms flew from a tree, right down onto the street. They danced in the road like little spastic ballerinas. The world is warming up and pulling me to be more aware. We saw a red cat sauntering around on our walk today. Said cat carried him or herself as if he or she owned the whole town, in a way that only cats can.

Do you ever want to scoop up the details, in all of their humble glory, and bottle them up?

09 April 2013

the four agreements

Sometimes a book comes along into our life and changes us profoundly. It takes a deep hold onto everything we struggle with daily and forces us, strongly albeit gently, to turn all of that darkness inside out into something that constantly chases after light.

The Four Agreements is such a book for me.

I love that the premise of these four principles is so elementary, and yet the power in following through with all of them is bound to bring monumental change to your life. Here is a little summary we keep on the side of our fridge, alongside memories captured in time, to remind us that peace is always attainable. That we can choose each day how we react to everything that happens. That we create our own reality and joy is always within reach, if we give ourselves the right tools.

The Four Agreements

// Be impeccable with your word:

  • Speak with integrity.
  • Say only what you mean.
  • Avoiding using the word to speak against yourself or to gossip about others.
  • Use the power of your word in the direction of truth and love.

// Don't take anything personally:

  • Nothing others do is because of you.
  • What others say and do is a projection of their own reality, their own dream.
  • When you are immune to the opinions and actions of others, you wont be the victim of needless suffering.

// Don't make assumptions:

  • Find the courage to ask questions and to express what you really want.
  • Communicate with others as clearly as you can to avoid misunderstandings, sadness and drama.
  • With just this one agreement, you can completely transform your life.

// Always do your best:

  • Your best if going to change from moment to moment; it will be different when you are healthy as opposed to sick.
  • Under any circumstance, simply do your best, and you will avoid self-judgement, self-abuse, and regret.

What books have had a huge impact on your life? 

08 April 2013

hello monday: dreams don't work unless you do.

Hello to happy rainy Monday things such as star fruit, (I'm in love with a new grocery store about 5 minutes away from our new place; tons of organic options and they are open until midnight every single day. Score and a half!) The Muppets soundtrack, organic peach white tea, and cozy library trips.

Hello to big opportunities for us and gLockets. And long, long, long hours for everyone involved in this adventure and being a part of a team and pushing yourself beyond what you think you can do. 
...because dreams don't work unless you do. It is true. It has never been more pertinent to me than it is now.

That quote has been rolling around in my head often these days. My mantra when I simply want to stop all this running around and willing my body to work with me because there is beautiful stuff on the horizon. There is a radiating light at the end of this crazy tunnel we have been racing in for years now. 

Hello to my fabulous sister in law publishing her very first book, This Morning I Woke Up Dead. Mindy is attacking her dreams with a fierce passion. It is outrageously motivating and inspiring to witness all of this incredible stuff coming her way, because of her tenacity. Go check out her book and I promise you, it will be time well spent. :) Her blog detailing her book promoting adventures is here and she has a facebook page so you can keep up with her book signings and when she will be on TV next! I'm really so excited for her! 

Hello to some life and health wisdom found in the most unlikely of places. Last week or so I listened to a John Mayer interview in which he talked about his recent medical obstacles with his voice and throat. It hit me in a way I wasn't expecting, with a force and clarity that was welcome and much needed. He basically said he didn't want to react with anger. He wanted to be extremely zen about it and approach it with an air of, what is required of me? I love that. I said to myself, "Self, you are required to take rat poison that makes you feel like you are going through chemotherapy. You are required to tolerate it. Get over it. Pick yourself up. Let's move on with life." Ahaha. No, really, I did. 

Hello to April showers at the duck pond and skipping up steps. An act that was oh so simple to her, and yet had me on the brink of tears because she's strong, she's determined, she's playful and she's healthy. And pouring every last ounce of love I have into raising her is a privilege indeed. We are immeasurably lucky she is healthy. I remind myself to never let that go unnoticed. 

Hello to educating people about Cystinosis in fresh ways to reach new audiences. I am so very thrilled Cystinosis, the Cystinosis Research Network (of which I am thrilled to be on the board of directors) and my friends Jen and Kacy will be featured on a segment on Lifetime's series Balancing Act. You can watch the video here and it will air tomorrow morning at 7 AM ET. Everyone involved did a tremendous job and I love that the information is in an easy to understand manner, while presenting the urgent need we have for fundraising and research at the same time.

Hello to what I consider to be a perfect spring mix to accompany the upcoming rainy days, sunshine filled afternoons while everything is decked out in florals and stripes. My spotify little darling (it's been a long cold lonely winter) playlist. 

What musical gems are on your spring playlist? I would love to hear! I'm always on the hunt for stunning ear candy. :)

Linking up with Lisa Leonard.

02 April 2013

every day is a tiny little life

the twinkling notes of music from the ice cream truck are ringing in my ears in a very welcome fashion. so happy, so whimsical, so sugary sweet. (ha, sorry. i couldn't resist!) the first time i have heard them here in the new place. such a celebratory way to begin a new chapter. (okay we have been here for a little over two months no, however we are still settling in.) it is a promise. a kiss to summer and a whisper of what beauty is to come. and oh my, do i need that right at this very moment in time.

she's humming pete the cat in her head..."i love my red shoes, i love my red shoes."

in all truth, march is a month that is hard on my heart. some things always hurt to remember, but the dagger cuts a little deeper in march. i've experienced a tremendous amount of loss in march. the air is on the verge of the massive change of spring and everything; flowers, grass, newborn animals, ideas, adventures, they are bursting at the seams to blossom into what they have always known they could be.

i am right there with them.

several days ago we said love ya later (something he would always say) to an animated man with an infectious smile. my great uncle had a love for not only telling stories, but crafting up the most colorful and unbelievable adventures. i grew up with the firm belief he would out live everyone else in our family; he would be the keith richards of our zany clan. my dad spent his childhood getting into mischief alongside him thinking he was his big brother, as he was only three years older. his spirit was so bold, it could not be contained and will no doubt live on in all of us who had the gift of knowing him.

then, last thursday marked 7 years since my sister passed. it is a hurt that doesn't heal. i don't think any anniversary of it has ever been "easy". every year after the first anniversary has sort of went back and forth on how i feel or how i deal. some years i don't want to talk about it. some years i want to do all of her favorite things while eating her favorite foods and write her novelesque letters and sing loudly to hanson songs in my car with the windows rolled down, knowing she is here with me, still.

and it is as clear as day to me that she sent us sookie.

a few weekends ago i learned a lot of wow worthy information in the span of about an hour. it was big stuff, is it big stuff pertaining to extended family members and the intricate web we are all a part of. it was a huge wake up call of the world saying, "hello, tahnie. pay attention. this is your life. right now. this is not a dress rehearsal and real life is always, always, always much more unbelievable than fiction." days after this, i decided i was brave enough to rock floral leggings as i ventured to a fire station tour with our honey girl. really, two simple things but a reminder life begins out of your comfort zone and that sometimes little dreams like taking your girl on a tour of the fire station, are just as massive and important as the big dreams.

this time of year always has every corner of my mind whirring with possibility. easter, florals, the festival of colors (although we didn't make it this year...dang it!), my favorite utah venue on the verge of releasing their entire concert line up for the summer, mother's day, dreaming and planning of summer. dwelling on this gift of being alive, exactly where i am. not wanting to waste the power i feel comes with that. because in all honesty, my health could be a lot worse. i recognize how remarkable it is i have my sight. what a tremendous triumph it is that i have one working kidney. i want to do more with what i have, make sure i am leaving sprinkles of a legacy that means something.

one of my favorite looks of hers. it is perfect, in that elton john meets steven tyler sort of way. ;)