pete the cat

refuge and reinvigorating moments can come in the most unlikely of places. for me, it was last night on a sunday trip to target, with the older country station on sirius (billy ray cyrus baby! you know you love the mullet!) and nirvana to keep me on my toes. after the past whirlwind of the last week and a half or so, doctors, hospitals, blood draws, ivs, MRIs (okay only one), tests, etc. i feel like a criminal just slowing down, breathing, being, and enjoying being a momma. last night as the dryer rumbled and the stove timer went beeping and i juggled everything with my girl on my hip, it was a blanket of contentment and gratitude so powerful i wanted to fall down to my knees in thanks. oh thank you for the luxury of having normal stresses for just one day.

i am humbled at the support from this post about my life with cystinosis. it was a gut wrenching post to write and even more difficult to hit publish. although i do it often, it is not easy to put your heart out there for everyone to see. but i believe with honesty comes awareness, with awareness comes more fundraising, and more fundraising brings more research. we have raised $1,135 so far in honor of Sookie turning two on wednesday. you all have me crying tears of joy. so thank you. a million thank yous. keep sharing the causes page and the blog post. together we are moving mountains for this small community, it is not a lie that every little bit helps. there WILL be fierce change coming about.

books that carry a strong and universal message always get me square in the heart and gut. wednesday was the first day in a week that i didn't have to be at the hospital or the doctor. we (roar, sook, and my momma, my dad had to go out of town on business) participated in the emerging adulthood cystinosis project and it was a good day afternoon of talking about the big stuff, chit chatting about the little things, and laughing at anything and everything in between. my friend maya (who is a fabulous social worker in new york and who is conducting the study) gifted this simple, yet remarkable book to little miss sookie.







pete is a cool cat who is so in love with his white shoes that he struts around singing about how much he loves them. then, through a series of mishaps, his shoes change colors. does pete get upset? no. heavens no. he picks himself up, dusts the dirt off his shoulders, and not only embraces his newest color of shoes, but learns to love them.

simple words, big concept. love your white shoes, if they happen to turn red one day, love them too. love them when they are green, purple, yellow. and if you happen to find yourself without any shoes someday? thank God, the universe, the stars and the oceans that you ever had the experience. live out each moment you are blessed to have with each color along the way. the beauty of the journey is the adventure each different color of the rainbow holds for you.

(corny? yes.) oh well.
that's how we roll around here. ;)

imagine (my life with cystinosis)

Some of you know that I had a kidney transplant when I was 11 years old, due to kidney failure as a complication of Cystinosis.

Some of you know that Cystinosis is a relentless disease, as it attacks every cell and organ in the body.

Some of you know that is is rare. A rare disease is one classified in the fact it affects less than 200,000 in the United States. There are about 500 people living with Cystinosis right now in the United States. Yes, five hundred.

Some of you know that cystine crystals, when built up in the body, result in cell destruction and death.

*******

Imagine being 28 and losing the ability to eat solid foods. Imagine facing stress with every meal, wondering if you are going to choke on your food.

Imagine being 28 and losing your voice. Imagine wanting to record yourself reading a book to your daughter, so that she will remember what you sounded like.

Imagine being 28 and losing muscle in your hands, having friends with this same disease who can no longer do something as simple and as pleasurable as snapping their fingers, or holding their phone, due to such severe muscle wasting in their hands.

Imagine taking medication every 6 hours. Yes, even during the night. Imagine this medication is known to cause ulcers in lab mice, extreme exhaustion, headaches, numerous GI problems, leaving you to push through a heavy fog throughout the majority of your day. You just reach the tip of that iceberg of starting to feel somewhat clearheaded, and it is time to take it again. You must take it willingly, because it is the only chance you have at slowing down your disease.

Imagine spending 2 hours of your day, EVERY DAY, doing exercises for your esophageal and hand muscles. To preserve what muscles you have. Willing your body to fight, fight, fight. To hang on. To thrive.

Imagine being required to put eyedrops in every hour you are awake, to diminish the crystals in your eyes so you won't go blind.

Imagine being thrown the harsh reality, that at a mere 28 years old, you must dig deep within yourself to unearth coping mechanisms to handle growing old gracefully, all before your 30th birthday.

Imagine you are the momma to a healthy, vibrant, little ball of energy who has such fervent zest for life, she makes you want to LIVE bigger & better every single day. She inspires you to fight tooth & nail. She opens your eyes to the notion that if you refuse to accept she will grow up without you, you could just be crazy enough to start a ripple of fundraising and awareness that will CHANGE that.

my friends, LIVING with cystinosis

CRN famly and medical conference

july 2011 San Francisco

photo courtesy of sarah dawson photography

We are here. We may be small in population, but oh we are mighty. We are brave. we are fighters. We forge ahead through dark days and up against tremendous odds. We are courageous. And we need your help. 

Anger can be a good emotion. It can be a great one. I've done too much crying over lack of research in terms of muscle wasting and Cystinosis. The time has come to take action. If you aren't part of the solution, you are part of the problem, yes?

In honor of Sookie's 2nd birthday next Wednesday, I have created a wish through the causes organization. You can click through right HERE to donate to the Cystinosis Research Network. I've made a goal of $2,000. We can do this. This is attainable friends! All of these funds are being dedicated for muscle wasting research. This is a crucial need right now and although difficult to face, is a GOOD problem to have because we adults now are living long enough to be facing this somewhat new challenge of the disease. We are living longer, but there is still so much work to be done in terms of research. We do not receive any government grants for research because of the rarity of the disease. (about 1 in 250,000 live births)

Sookie thanks you. She loves her momma. She wants her momma to be here for every one of her birthdays, to provide kisses, hugs, encouragement, laughter.

Alone we can do so little; together we can do so much. 

Helen Keller

*******

A quick edit: Although these are my health challenges and at times I wonder if I am strong enough to face it all, I am BLESSED BEYOND ALL REASON that I get to live this life. I LOVE my life. I have already lived three times as long as I was supposed to, I have a gorgeous little pint sized ball of sunshine who is 1 of about 10 in the world and I get to do life with the most incredible, kind hearted, guy ever. He rubs my feet when people are trying to get an IV in me and they are failing miserably.

If you prefer to donate through another avenue besides the causes page you can do so HERE through a secure link through PayPal. Just mention Sookie's birthday or Sookie! :)



Checks can also be sent to: 

Cystinosis Research Network

302 Whytegate Court

Lake Forest, IL 60045 USA

Checks should be made payable to the "Cystinosis Research Network".

Remember that The Cystinosis Research Network is a tax-exempt organizations granted "501(c)(3)" non-profit status by the I.R.S., The CRN Federal tax id # is 043323789. All Contributions are Tax-Deductible.

THANK YOU.

love & light to you all.

xo.

LIFE IS FOR LIVING.

being shocked through needles & #13 in the app store

i embrace the paradox of motherhood that even when you dig into the vast oceans of your vocabulary, you can't find one single word to comfort yourself, but the smallest touch is enough to calm and soothe the little being that grew inside of you. it is such a precious phenomenon. and it never ends; my momma can always make sense of my messy emotions even when she can't stop worrying herself. (love you momma!)

have you ever wondered what it feels like to be stuck with needles (okay, they weren't very big, but they were needles nonetheless and even after all these years, i still don't get along well with said devices!) then shocked through previously mentioned needles? this sensation filled test is called an EMG and is yet another one i get to tuck under my belt of medical experiences. oh well my chickadees, it was quite a treat! i left the doctor's office with tiny pen dots all over my arms and hands, a few blood spots, and an appointment for a MRI on tuesday. the perfect way to celebrate friday, right? ;)

i was grateful for this appointment though. i've been waiting to see this particular neurologist for two months now. it is all gravy. & i feel answers within my grasp.

this is how i celebrated when that exhilarating adventure was over.






a green machine naked juice and a mini donut! I live life on the wild side friends.

the rest of the weekend was quiet and good. dinner out with some of my favorite people, rory and I working as a team in the ever evolving challenge of dining out with a toddler. succulent sweet potatoes with walnuts and lots of laughter about memories made and memories that are waiting for us. saturday was rainy, we grabbed a quick sandwich at subway and i quietly celebrated that i was able to eat BREAD and MEAT, together. (two things someone told me not to eat anymore because of swallowing issues. but these two things are marvelous, thus I will continue to eat them.) if you know me, you know i am a rule breaker like that.

we popped on over to the bistro/boutique where we are having Sookie's 2nd birthday party. Daddy had not been there and I wanted to show it off to him.






it felt invigorating to be out and about, giving myself freedom from worry.

rory's app he created, tattoo you, has been climbing the top free entertainment charts in the app store. it was #51 on Friday and today is hovering between #13 and #14.






yes, that is us above talking tom cat! we are doing happy jumping jacks around here! something really big is coming to this app too. I will share when I can!

i'm off to have my MRI this winter wonderland of a day. after i posted a facebook status update that if i do have a brain tumor, i think it will be in the shape of a sour patch kid, my friend vee thinks it will be in the shape of a manolo blahnik. ;)

happy tuesday sweet friends!

I am woman, hear me roar

It is a mismatched pajama and mismatched sock kind of night. A hippo shirt with pony pants kind of night. A dancing in the driveway in this glorious (& highly uncharacteristic for Utah) January rain kind of night. Earlier we ventured out in this gorgeous wet darkness to meet Daddy and cousin K for dinner at our brand spankin' new Buffalo Wild Wings.

It was a little loud. Ha! Mother of the year right here, I kind of completely ignored the fact it is a sports bar after all and thought, "Oh, Sookie will LOOOOVE it. Totally kid friendly." I have to hand it to her though, girlfriend did wonderfully considering she was exhausted, the volume her ears were up against, and the fact Rory and I had to take turns making sure she wasn't going to fall off the barstools to crack her head open. Lesson learned: Buffalo Wild Wings? Delicious wings. Nearly as magical as Casa Bonita (did I ever blog about when we went to Casa Bonita in Colorado? Yes. It is as splendid as South Park portrays it to be! No lie. Food? Enh. Atmosphere? Way.too.much.fun. More on that another time.) Not the best place to take Miss Sook. ;)

I've had a gnarly migraine headache for about seven days now. The back of my head pounds and pounds. It feels utterly ridiculous, but Rory gave me a hug in the kitchen this morning and holy $&;@")(;: I'm quite certain he handed all of his positivity and zest for life over to me through cosmic squeezes, so I should be good!

If not, the neurologist I've been waiting two months to get into is finally going to see me on Friday, so that's wonderful!


There have been many, many, many late work nights for R lately. It has been tough, but...I am Tahnie, hear me roar. I am woman, hear me roar. I am momma hear me roar. I can do this. I got this. It is all worth it. ♥

There are so many things I'm excited for right now, things that pump my blood at the rate of a hummingbirds wings and fill my steps with glitter and sunshine: Sundance, our girl turning two in two weeks, participating in the Cystinosis emerging adulthood study, Valentine's day. The older I get, the more I realize there is always something to celebrate, and that my friends? Is a beautiful thing.

giving fear the middle finger

I met with a speech pathologist last week.


It was a big step for me, in confronting this new phase of my health. While cystinosis (and therefore, the muscle wasting associated with it) is progressive, I believe in fighting and being proactive in the avenues I can be. Although I cannot reverse what is happening or undo the damage that has been done, I can work hard to give my body assistance and do what I can to stay strong. he is going to give me a regimen of exercises to do to aid muscles that are connected to swallowing and also voice. I'm jumping in and taking action. and even if it doesn't help, at least I can say I did it.


At the suggestion of my awesome, inspiring, courageous friend Jessica, I purchased these cool tension balls to exercise my hand and arm muscles. There are some jokes there that I won't make, ha but... I'm excited! Knowing that I'm taking an active part of fighting back is oh so good for my heart and soul.

I've been living my life in fear the past several months: fear of the unknown, fear of Sookie growing up without me and not remembering me, fear of losing my voice, fear of having to eat nothing but puréed foods because of esophageal muscle wasting, etc, etc, etc. But a few nights ago during bath time, I watched as Sookie became so overjoyed with glee that she was screaming YAY at the top of her lungs and smiling so wide, shaking with utter happiness. Okay girlfriend, I get it. Life is short. Splash in the tub until the floor is as wet as the ocean, take your monkey for a walk on a cold day, eat your soup on the kitchen floor, slam the bell from pit while singing 'Elmo's world' as loudly and obnoxiously as possible... live it up, always bite off more than you can chew, grab fistfuls of life and suck the marrow out of each day because this is all there is.

That is where I am and what is happening. 
How are you?


xo.
tahnie

cherish what was given.

the now.


i love it and i let the warmth of it wrap around me like a blanket on a chilly evening.


the achingly precious, heart-stoppingly infinite scope of the now.
i'm throwing myself tenfold into scooping it all up. holding it fast in my hands, because it is fleeting and i want to remember this. 


there are so many situations and words that have thrust epiphanies on me in this beautiful thing that is twenty twelve.


yet another came when my dear friend Jessica, posted this excerpt from her memoir Roller Skating With Rickets on the book's facebook page.

A wise friend once told me to "cherish what was given." For those of us living with difficult medical conditions from birth, we can either cherish what we have or lament what we don't. I can dwell on the fact that I count the people I know who are living with cystinosis and are over the age of 40 on one hand, or I can express my immense gratitude at having lived 30 wonderful years. (Psst...my parents were told I'd only live 10. I just read a recent news article that said I'd probably succumb to death before the age of 40. But I haven't even had a mid-life crisis yet!) We don't come with expiration dates. We are given the blessing of life while we have it. Cherish what was given.

Isn't she remarkable? 

stella & dot spring 2012 launch!

Are you ready for this?!

;)

From left to right:
1. Alexandria Necklace
2. Odyssey Ring
3. Cora Chandelier Earrings
4. Capri Chandelier Earrings
5. Tranquility Necklace
6. Stackable Gem Ring
7. Sidewinder Ring
8. Pippa Stone Earrings
9. Zoe Lariat Necklace


The above eye candy is just a little taste of what is available now from Stella & Dot! You can stay up to date with happenings, new products, and flash sales through my Stella & Dot Facebook Page

The new spring 2012 Stella & Dot line launched just a few hours ago and...wow! I'm literally drooling over my keyboard. It is a wonderful story of how I landed with Stella & Dot and I love everything they stand for and are about. The best part? The flexibility of working around my health and having the luxury to be Sookie's primary caregiver. If you know me even a little bit, you know this is priceless.

All funds earned through my Stella & Dot business go directly toward my overwhelming medical expenses. I only touch on this every now and then on the blog, but my medical bills are incredibly scary. I can be extremely shy about this aspect of my life, but it can be a very very stressful struggle. I want each and every one of you to know how much you have blessed my little family by purchasing jewelry. So...a very giant, massive, THANK YOU.

Hope your weekend has been full of pretty things, light, and lots of love.
xo.



A little tidbit of our mission statement:

WE DESIGN IRRESISTIBLE JEWELRY AND HANDBAGS, YET OUR PRODUCTS ARE ONLY THE TANGIBLE EXPRESSION OF SOMETHING MUCH GREATER.

We envision a world where women live bold and joyful lives. They inspire each other through passion, hard work and style. Shop our fashion jewelry and accessories online or at aTrunk Show. Host a jewelry party and share styles your friends will love. Become a Stylist and learn how our flexible work-at-home positions are creating work-life balance through entrepreneurial opportunities for women just like you.

nothing is worth more than this day

this morning began with a greeting of a tiny little dreamland giggle sweetly flowing through the air from behind a curtain of red hair. the moment was graced with God's perfection and i drank it up.

this precious trinket was the top off that today was going to be a good one.

i feel like things get more complicated by the minute around here, but that doesn't mean i am weak, nor am i at a place in my life where i will be defeated by the ugly pieces.

i'm ready for this year. twenty twelve. so ready. it is going to be big. it is going to be wonderful. it is going to be scary. it is going to be an adventure. it is going to be full of laughter.

i feel stronger than ever with the gift of each day. seriously? each day is huge. it is what we make it. i find myself asking the tough questions lately, except the opposite of what usually escapes from a human's lips. "why am i so lucky to have another day?


utah mother nature is horribly confused lately, bless her sweet heart. we are having record breaking warm weather here in the beehive state. i have to confess, i do find myself dreaming of snow angels with a little redheaded pixie bundled up in a lavender snowsuit, but good gracious, we are soaking up this january spring for all it is worth. it is funny how it flows into a new mentality i am throwing myself into...embrace it.