one thousand gifts


the whir of the ceiling fan and a simple white bow in her hair. two things, so ordinary, yet filled to the brim with extraordinary on a sunday afternoon when i am paying rapt attention.



martina mcbride and a cheshire cat smile moon.
friday laziness in bed with donuts and christmas specials on the iPad.
...simply because we could.


the yummiest combination ever of blue raspberry and grape sour patch kids. (& our sweet sleeping old doggy.)

secret late night tea parties under the white light of the down comforter. sipping imaginary tea and chewing pretend cake.

yes, i'm (still) reading ann voskamp's one thousand gifts. her words are sweet nectar to my eyes, mind, heart and soul. i read them slowly to absorb every last ounce of candy, then many times i go over them again, a fine toothed comb hidden in my fingers, taking each word and truly feeling it. taking it in, treasuring it, not wanting to let go.

at times the rushing current of what is to come with my health battles and the abilities that will be taken away from me is simply too much. i obsessively check my hands each morning for new muscle wasting. i fall down. i don't feel strong, in fact, i feel anything but. however, i cannot live there. i cannot miss what is happening now because i'm consumed with what will happen eventually. there is so much. and it is all special. and maybe, just maybe if i keep this running list of the boundless glory in each and every minute, i will live into the strength of a girl who can and will handle the hurdles with a grace of a seasoned warrior princess.



having the strength to cut up a lemon.
the physical power to pick up my girl, to hold her close.
being able to drive.
being able to walk.
the gift of eye sight, to behold the beauty all around.

when the tantrums come swiftly and fiercely, when she throws garbanzo beans all over in the bed, when she thinks playing in the toilet is hilarious, when she channels a redheaded tornado, when i feel like i'm living with a circus monkey, when the messes pile up, when my patience is tested, when the life keeps pulsing no matter how sick or exhausted i feel...

i have to stop.

i have to stop and hold her close and breathe deep and thank.

thank it all that i am here for this.
with her.
on earth.



linking up to:
bits of splendor monday

pass it forward

you know how ellen degeneres ends every one of her shows with the simple, albeit powerful: 
"be kind to one another."


it hits me with the power of gale force winds each and every time. and not simply because she has given some very deserving person a house and i've cried along with them.


the older i get, the more i realize this is the secret of life. 
truly.


have fun. 
love. 
be kind.


honestly, i think that is what life is about.






there is so much hurt in this world. so much pain. everyone you interact with on a daily basis has a story. a story that is theirs, and theirs alone. it will no doubt be sprinkled with beauty, saturated in joy, but there is heartache at every turn as well. think about how much your day is turned around when someone extends a helping hand, a stranger throws your a lifeboat. whether it is a neighbor who invites your kids over to play when you have a migraine, a stranger in front of you at starbucks who pays for your order as you are coping with anxiety of an upcoming doctor appointment, every little thing adds up to big joy, great days that might have just been good ones, the fuel to keep it going, spreading the love, onward, upward, forward.


it tickles every vein in my body to see amazing, beautiful, motivating projects such as this, come to light!


new project: pass it forward



in ashley's words:

Pass It Forward was designed to get people to do little things, everyday, that makes an impact on the community around them. Pass it Forward is designed around a card (read card that I've attached now so you understand). Each card is given a unique ID number. Lets say we're at McDonalds, and I decide to pay for the person behind me in the drive through. I'd give the cashier the card, and tell them to pass it along to the next car when the give them the food that has been paid for. I then go home and log into the website that was on the card, and find my unique ID number. I log into it, and add my information... My first name, city, and a description of what I did....
Let's say the person behind me was you, you would pass it forward to someone else, and then would go home and do the same thing. From the very beginning, you will be able to track where your card goes, and how many people you affect just by doing one simple act of kindness.




*******

let's do this together. let's ease the pain of life and bring forth the joy. let's love one another. really, it is what we are here to do!

xo.
tahnie

{guest post: why you should share your story}

Oh, I wish you could all sit and chat with my featured sponsor this month. Even if for a mere 10 minutes. She would change your life. Truly. I am miles beyond lucky (I don't think the word exists to adequately describe how blessed I am) to call her my friend. Her optimism in the face of Cystinosis and her powerful zest for life is extremely contagious. 

Enjoy!!!

*******

Hi everyone! I am so thrilled to be posting on A Happy Girl as one of her sponsors this month! In reality, Tahnie has sponsored me in more ways than one. According to Thesaurus.com, a sponsor is someone who helps, supports, and promotes. Aside from supporting me during times when cystinosis has pushed its way into my life front and center (and reminding me to more appropriately shove it back to the periphery), this wonderful friend of mine has also helped promote Roller Skating with Rickets, the memoir that I recently published about living with joy in the face of hardship.

Jess, on her third birthday.

I sincerely believe that we all have a worthwhile story to tell. When I shared with a writer friend over a year ago my intent to publish a memoir, she asked me to ponder this question: There are so many out there, so why would I want to read yours? I've come to the conclusion that people should read it, but not due to anything inherent in the story itself. Sure, my tale deals with living with a rare, genetic disease that previously (in the generation just prior to mine) was virtually untreatable and almost always took life before the age of 10; facing troubling unknowns; participating in a research study investigating a very foul medication; falling in love; hiding an eating disorder and subsequent addiction to diuretics; learning of the murder of my parents-in-law by their son, just barely out of his boyhood; feeling judgment placed on me by others (and likewise, unfairly judging those around me); and seeing the sagacity of leaving regret where it belongs: in the past.

Yet I imagine you have a story with at least as many, if not more, startling details. The more people I meet, the more I realize how much pain there is in the individual life, lived imperfectly.

Jess and husband Wayne on their wedding day

Surely we all have battle scars, and we thereby have much in common. So why should you read my story? Well, because perhaps our shared experience will inspire you to share your own.

And maybe, just maybe, I can inspire you to see joy regardless of the circumstances.

It's a lofty goal. We have to accept the reality of sadness in order to embrace happiness; just as light cannot exist without darkness (or at least the distinction would be totally unknown to us), so too does beauty go unrecognized without the ugly, the harsh, the problematic. No amount of rosiness in my glasses or yours can allow us to claim that we live in a world without pain. Even so, there is beauty all around us. Even in the ugly. Perhaps especially in the ugly. We only have to look for it. Dare I say it? There can even be so much beauty in terminal 
illness.



I'm a quote gal. Quotations kind of represent my Achilles' heel; I hide behind them when my own words are so woefully inadequate. So I'm going to leave you with two powerful quotes. The first, written by David Martindale in the August 1982 issue of Health magazine, is this: "Although it lacks the notoriety of cancer or heart disease, cystinosis is a killer, and all its victims are children."

The second was said by Swiss psychiatrist Carl Jung: "Man needs difficulties; they are necessary for health."

My friend Tahnie? She is one of the most beautiful, healthiest, inspirational adults with cystinosis that I know. That sentence is a paradox, and it's beautiful one at that. If you'd like to read more about the paradoxes of life, consider Roller Skating with Rickets and Other Paradoxes of Life with Genetic Disease. And then share your own story with those around you.

*******

Now through Feb. 23rd, enter code SWEET at checkout for 20% off. If you read it and liked it, can you help me spread the word? All proceeds will be donated to cystinosis research. (The coupon code does not impact the amount donated.)

our love is






I say...







Love is: throwing all caution to the wind & going on a date after an awful breakup. Love is: Starbucks, mountains in the distance & the thrilling goosebumps of meeting someone who will change your life forever. Love is: fun, mischief, butterflies, & only weeks after meeting, a man who boldly tells me "our love story will be the greatest ever told!" Love is: falling for a girl with a crazy fatal illness and loving her through the years with reckless abandon. Love is: going to every single doctor appointment & being an absolute rock despite the fact you are petrified of losing your girl and your unborn daughter. Love is: strings of "I love yous" in a labor and delivery room in the face of the crippling pain and blissful magic of childbirth. Love is: teaching this girl how to truly LIVE and dance to the mantra of "may the best of your todays be the worst of your tomorrows." ♥



He says...


Love is being yourself in front of the one you love, to be truly transparent. Love is being able to fart (we all do). Love is spending every last dime to experience life and enjoy it why we have it. Love is seeing beyond outer layers and truly caring what's inside. Love is pretending to like frozen pizza for the first 4 months. Love is the only thing you can give that won't take. Love is free and abundant. Love is having a migraine and letting someone release tension by beating the hell out of some drums. Love is for the moments of now and knowing but not worries about the trials that tomorrow will bring.

grand total and the BIG winner!

Happy Sunday evening!

I'm beyond thrilled to say that our grand total for the fundraiser for Cystinosis Research Network in honor of Sookie turning two is...
$1,920!!!

I thank each and every one of you who donated, shared the links, donated items for the fundraiser raffle, read my words and spread the news about this. Your hearts are beautiful and I am blessed by your generosity. I am moved by the kindness I have been shown in this endeavor!

I'm going to give myself a rest for a few weeks, then gear up for our next fundraiser golf tournament that takes place in June at Thanksgiving Point in Lehi, Utah! I love fundraising. It helps me feel proactive and powerful!

The winner of the big giant giveaway is...
Drumroll...







I hope your weekends were filled with color, joy, laughter and sunshine!

xo,
tahnie

there is magic everywhere

Glitter in the dryer lint always makes me smile. It is my modern telegraph from the angels, a gentle nudge as if to whisper, "Hey, remember when the life you are living now was only a mere fantasy in your head? Well, it is here, it is now, and you are living it baby! There are sized 12 to 18 month clothes in your washer and they belong to your daughter, who grew in you. Although your body fails you on a daily basis, never lose the wonder of how it was able to produce a perfectly healthy jumping fairy, with red curls that dance in the beams of afternoon light."








She reaches for my hand as we take out the garbage. I don't have to ask, it is a silent gesture. How is she able to walk on her own out in the dark of night? Over steps and down a concrete driveway? I scoop her up nonetheless, simply because I can.


Her arms swing high and point in different directions, looking for the moon. It is hiding tonight beneath layers of February clouds. She points to a star and tells me "Momma, fly!" she does this often when we look for the moon. She flaps her arms and I ask, "You want to fly?" She nods enthusiastically, "Uh huh!"








Reading books to our girl at night
preparing for sweet sleep
I catch Rory staring at me.
I ask, 
"What?" 
His response? 
"I just like to look at your face."

Quiet day.

My body feels a bit like a mess today; my throat feels like it has needles in it, my lymph nodes are swollen, my hip burns, and my arms are doing what they've been doing for the past 8 months now with the stinging and tingling and what have you. (Numerous tests, lots of medical bills, and still no answers on that mystery!) I laugh and plow forward and wonder aloud if God is driving the nail of patience into my heart?

Oh! And earlier today I jumped up to run into the bathroom to throw up and slammed my foot against Sookie's play kitchen. Her fun, colorful, quirky play kitchen that daddy and I gave her for her birthday, where she shuts the microwave door and cheerily imitates the bleep boop beep of pressing the buttons.









Gross, huh? I'm obsessed with instagram! If you would like to follow the feed, I am ahappygirl.

I'm 98% sure I broke my little toe. I've been icing it and having a low key day. I'm blessed I have such a loving man by my side to bring me ice packs, hot green tea and ice lemon water! Have I mentioned he is the best?

I had fun with Miss S's plate o food again today. This was before the toe smashing incident. Ha!






Raspberry and blueberry flowers on organic garbanzo and black bean stems in a field of tillamook (um, best cheese EVER!) grass.

I'm going to post photos from Sook's birthday bash soon. I still have so much to learn editing wise. But life is for endless learning, right?! My grandpa (her great grandpa, she calls him "utter poppa" (other poppa) made me cry with his gift.







My grandma Kay passed on very unexpectedly in 2003. She was so many relationships bundled into one person; she was like a second mother to me, an aunt, a much older sister, a best friend and one of my biggest cheerleaders. She took care of me in the weeks and months after my kidney transplant so that my mom (who donated to me) could recuperate at her house. The surgery on the kidney donor is much more involved and painful than on the recipient.

Obviously she and Sookie have not met in this life, but to see the words on the front of this envelope reduced me to tears, then I opened it and inside was one of her fancy handkerchiefs. Holy tears batman! I hope I instill the preciousness of gifts such as this in Sookie's mind and soul. So special! A part of me knows she already "gets it".

Rory and I might be able to go out of town later this week on a little adventure. For Valentine's, for our sanity, for love, for us, for life! I didn't want to jinx it by mentioning it, but I'm too excited! It would be the first time in two and a half years that we will go somewhere and it won't have anything to do with my health!

Happy Sunday!
xo,
tahnie



fun with food


I'm excited it is Friday! I had a little too much fun with Sookie's plate of food today. I always do my best to make meals and snacks whimsical by injecting a touch of creativity into them. So today? Tillamook cheese windmills, with Annie's bunny pretzels hopping gleefully on a grassy knoll of organic black beans. Crazy? Maybe. Fun? Oh yes! It does my heart good to see that girl smile.

How do you have fun with food at your house?

Have a happy day!
xo,
tahnie

P.S. - Don't forget, with a small donation of $10 to Cystinosis Research you can win all of the goodies HERE valued at nearly $600!!! :)

a $589 giveaway!

i cannot find the words right now. these generous angels are all banding together to make a big impact.

we will be taking entries until Tuesday February 14th, and a winner will be announced on Wednesday February 15th!

with this BIG giveaway, valued at nearly $600, you can win the following:











SHOP BLOG | TWITTER






































































BOOK | SITE |  FACEBOOK








SHOP | BLOG 






















































If you are new to the blog
here is a quick snippet of our story
and just why this giveaway is so important.
We are in dire need of NEW research with this disease
and I am ready to make it happen.
I recently wrote about
My daughter needs me here on earth with her.
It is as simple (and as heartbreaking) as that.


I am a 28 year old mother, living with a rare (1 in 250,000) disease that is ultimately fatal. The disease is called cystinosis. Many of my friends fighting this disease have not lived to see their 30th birthdays. I have a beautiful, little ball of light who turned two years old last week. Because it is so dangerous for women with this disease to go through such a high risk pregnancy, she is 1 of about 10 in this world.


 Cystinosis is a relentless illness that attacks every cell in the body. Treatment is a drug that has similar side effects of chemotherapy; this drug must be taken every 6 hours, of every day. This medication slows down the progression of the disease, but there is no cure. Eyedrops must be done every hour one is awake, in order to prevent blindness from the buildup of cystine crystals in the eyes. Cystinosis causes kidney failure, diabetes, stunted growth, muscle wasting, problems swallowing, and many other complications. 




TO ENTER:
You must be a follower of the blog to enter.
This is mandatory, along with the purchase of a raffle ticket! :)
Both actions count as one entry.


To follow: Find the 'join this site' button
on the right hand sidebar
(right underneath the about me section)
AND
purchase a raffle ticket to win ALL the above prizes
your "ticket" is a $10 donation to 


you can donate HERE
or 
HERE through Paypal
(mention me, Tahnie if donating through Paypal)


Multiple entries may be purchased if desired.
A $20 donation is two entries, $30 is three entries, and so on.

Leave one comment for every raffle ticket ($10 donation).


Giveaway is open to U.S. residents only.
(Thank you for understanding!)
Giveaway will end February 14th, 2012
Winner will be picked at random and

announced here on the blog on
February 15th, 2012.


Thank you from the bottom of our hearts!
We are such a small, small community
(only 500 of us in the U.S.)
EVERY SINGLE DOLLAR
brings us closer to better treatments
and ultimately a cure.


and good luck (!!!!)


p.s. 
this isn't a part of the giveaway
but, could you 
on top baby blogs?
the more votes, the more awareness for cystinosis!
you can vote once every 24 hours.


thank you.
thank you.
a million thank yous.


xo,
tahnie


little daybreaker

the day is new and so am i. it is even better than a new year, it is a fresh bright new twenty four hours. endless possibilities, boundless hope. the novelty of this notion will never lose it's power over me. and i love that.

i watch in sheer wonder as her eyebrows arch, her lashes sweep, her nose, simply exists, so perfect in the morning light. her hair flutters from the breeze coming from the fan. she scrunches a tight fist to rub a tired birthday eye. i eat it all up. if you ask me, it is better than cake.

even better? i didn't throw up from meds this morning! hallelujah!

this afternoon is momma time to strut and sway to a weird, but fabulous mix of ryan adams, aerosmith, miranda lambert, and kings of leon. there is always laundry to do and things to pick up and 10 more doses of eyedrops to get in before the day is done, but in this moment it is my time to play and lose myself in the melodies. taking a breather from to dos and must dos and oh i'm so happy i get to dos (as in putting together a massive giveaway post for tomorrow to raise funds for cystinosis research).

it is another big week for us around here. there is so much to be happy about!

sneak peek from sookie's party at dear lizzie.




another piece of joy to kick off this gorgeous week? a happy girl was picked as "blog of the week" over at gentri lee's (!!!!i am speechless with gratitude and unbelievably honored! i'm sharing a guest post over at gentri lee's today as well, so please check that out! it just might spark some inspiration for you. i hope it does! :)






wishing you a happy monday!
make it happen.
xo.
tahnie

beauty





"I want to see beauty. In the ugly, in the sink, in the suffering, in the daily, in all the days before I die, the moments before I sleep. Isn't beauty what we yearn to burn with before we die?"
{Ann Voskamp; one thousand gifts}

happy tears


oh, the happy tears.

they came quick and often yesterday. each one it felt, was outlined with a memory of that day two years ago. the peace. the bags we packed. the unknown. the heightened awareness of the preciousness of the gift of existing. the multiple iv attempts. the stress. the hope hanging so heavy in the air, it was a wonder the whole birthing room wasn't a haphazard mess of unicorns and pink glitter.

why yes...i do think there could have been unicorns and pink glitter in that sacred room that remarkable february day that changed everything.

happy weekend!
xo.

what are you up to this weekend?

Birthday Girl

Sookie.

You are two today.




You are grace.
You are beauty.
You are light.
You are bravery.
You are wishes.





You are rainbows.
You are sunshine.
You are happiness.
You are laughter.
You are hope.




You are strength.
You are wisdom.
You are courage.
You are energy.
You are patience.




You are mischief.
You are music.
You are colors.
You are euphoria.
You are rest.




You are chaos.
You are noise.
You are whimsy.
You are zest.
You are fervor.




You are joy.
You are passion.
You are faith.

You are love.

You are life.

two years ago.


this photo is from two years ago. i saw this car on the freeway one day when i was on bedrest and we were on our way to the hospital for my twice weekly non-stress tests. it was such a huge sign from above for me.




Two years ago, we were driving to the hospital to get checked in. I felt paralyzed with fear knowing I might not make it through labor and the stress it put on my body, but found the strength to face it head on with the incredible possibility of spending just 10 minutes with the amazing little girl who made me brave, who made me believe in miracles again after tragedy, and who wanted to see us so badly, that she decided to come down from heaven even up against crazy, unfathomable odds. ♥