30 October 2012

oh happy day; a cystinosis fundraiser giveaway!

i'm a big ole ball of sunshine today! juggling momma duties, projects that fuel my inner creative gal and best of all? bringing this incredible giveaway to you sweet readers! this month, on october 18th to be exact, was the 18th anniversary of my kidney transplant. i thought it would be perfect to celebrate with a big giveaway and fundraiser for cystinosis research! i serve on the board of directors for CRN and feel truly lucky as pie (yes indeed, pie is lucky...) to work to make a difference in the lives of those living with cystinosis, and their loved ones as well. 

although my transplant did no doubt save my life, cystinosis still affects every other organ in my body with the buildup of cystine crystals. the truth of the matter is that awareness is a big passion of mine because this disease is so rare, research funds are severely limited. that is just how it is. we don't have the reach or the household recognition of other medical illnesses that affect a larger population. the majority of our research funds must come solely from family fueled fundraising efforts. at times this can feel like an impossible uphill battle, however the blog world fascinates me with the kind hearted people out there and i am thrilled to bring you this endeavor today!

cystinosis causes the body to make toxic amounts of the amino acid, cystine. this results in cystine crystals building up in every cell, tissue, and organ of the body. my native kidneys were destroyed by the time i was 11 years old, resulting in my transplant. other obstacles in battling cystinosis include, muscle wasting complications (hand weakness and choking due to esophageal muscle wasting), diabetes, and blindness (due to the crystal build up in the cornea of the eye.) the medication regime is relentless as well, cystagon every 6 hours and eye drops every waking hour.

the only treatment for cystiniosis is a drug called cysteamine that has side effects that echo those of the harsh ones of chemotherapy; extreme fatigue, overwhelming nausea, headaches, dizziness and more. in addition to this, the medication must be taken every 6 hours. many people living with cystinosis cannot tolerate a full dose of cystagon due to the debilitating side effects, thus the cystine crystals continue to build up and cause irreversible damage. with people banding together and working toward a common goal to improve treatment, i truly believe a difference can be made in how this disease is treated.

my heart is bursting with love from these fabulous companies who have donated products and credits to their amazing shops. visit them, love them, support them. they are true gems in joining my celebration and adventures in awareness!

with a simple $5 donation to cystinosis research, you can win all of the following goodies; nearly $300 worth of fun, happy, things! instructions on how to donate and enter are below! :)

20 pack of Choose Joy bracelets from
Lil Blue Boo
blog | twitter | facebook

$25 credit to
Three Bird Nest
shop | facebook | etsy

$20 credit to
The Sweet Sugar Beet
etsy | facebook | blog

$30 iTunes gift card from
(celebrating their two newest apps in the apple app store:
ABSmatic and Put A Bird On It!)

26 oz cinnamon candle
16 oz sugared vanilla bean candle
8 oz clean sheets candle
5 oz cucumber melon candle
(special thanks to Melanie for this donation!)

timeless wristlet in patchwork paisley
fold and go organizer with notepad in patchwork paisley from 
Lauren with Thirty One Gifts
(Lauren is the mother of an awesome, brave little boy with Cystinosis)

belle fleur ring from

lousie dress (also can be worn open as an overcoat)
size 6
from Denee' Kochersperger
Trunk Keeper ID #133


make a $5 donation to 

you can donate HERE through Paypal

it is as simple as that! :)

Multiple entries may be purchased if desired.
A $10 donation is two entries, $15 is three entries, and so on.

Giveaway is open to U.S. residents only.
(Thank you for understanding!)
Giveaway will end Wednesday, November 7th, 2012
Winner will be picked at random and announced on
Thursday, November 8th, 2012.

28 October 2012

momma lessons

i had a vision.
this fun, simple, little vision for my family for halloween.

...and can i say the electric hope that runs through my veins upon typing or even saying, my family, is glittery magic of a (long wished for) dream fulfilled?

my mom is simply divine. she worked her bee-hind off this week making sure Sookie's costume was just right. i like putting stuff together from various places, making changes, switching it up, and turning it into a costume.

we had three halloween parties yesterday. we had a whimsical theme. rory was on board as well. my excitement was bursting. we transformed sookie's bouncy red curls to green. the time came to put on her key pieces of her costume.

she wanted nothing to do with it.
we are talking kicking, screaming, crying.
flat out refusing.

we gave up.
it wasn't worth it.

here is the thing.
i can't be mad.
or even justify frustration.
it is funny.
hilarious even.

i can say to her:
remember that halloween when you were two and momma and glamma put a lot of heart into your costume? then the day came to wear it and you decided you didn't want to? no matter what we offered, you weren't interested?

one of the biggest lessons in my child life specialist training (college, working at a preschool, volunteering in the hospital, etc) was that even when you throw yourself into preparing for something, doesn't mean it will go according to plan. (i always say plan is 4 letter word in our house.) even when you do all your homework, that doesn't mean the step of events will go smoothly. little people are distinctively unique; there is not a solution that is one size fits all...for anything! whether it be preparing a four year old for an IV, talking a 7 year old through a spinal tap, or something as trivial as getting your spunky two year old into a silly halloween costume. please know i realize the immense emotional landscape and developmental levels between these three different scenarios, but it all does relate in that motherhood is a lot like child life specialist land wherein you must ALWAYS be ready to let go of what you had planned & go with the flow, no matter how much preparation you put into it.

i know how superficial it is to even bat an eyelash over this. i know i'm blessed beyond all reason to even be a momma, and the fact i am even allowed the luxury to "stress" over something so ridiculous, is a true gift. 

here's to being grateful for life's little frustrations, because they are the pathways to wake up calls and grounding you when you start to venture from how crucial your own little rainbow is.

26 October 2012

halloween snake wreath

i made this spooky snake wreath for halloween yesterday with our sookie girl! it was silly easy and cost under $5! my kind of craft! ;)

i saw the original on www.marthastewart.com and because i am not martha, simplified it to the max. i picked up a mini grapevine wreath in the dollar section at target for $2.50, two packs of vinyl snakes at the dollar store and used black spray paint we already had. (um, we love spray paint around these parts!) martha's super fancy version calls for floral wire, but i didn't have any so we simply played weave the snakes through the wreath. it worked great and everything was snug enough to stay in place. then, i went crazy with the spray paint. seriously, so so so easy! aaaaand....i love it! :)

happy friday!

19 October 2012

health & heart things

the lymph nodes in my neck are stinging today. a sure fire sign i pushed my body too far yesterday. as we were jumping into the car yesterday morning to head out on a mini road trip to meet up with family, i remarked to my mom, "why is it that when supposed to be resting, i am still flying at 100 miles an hour?"

there have been some loops health wise lately. or should i call them hiccups? that is just the way my life goes, and is. always something. i am in a constant state of learning and reassessing and changing. it all molds me to a better version of myself and softens my heart. which ironically enough, is exactly what i prayed for this morning: to allow every bit of everything to soften the edges all around my heart.

it isn't easy sharing your heart all the time. even in blog land when you have control over precisely what you choose to express and the details of your life you put out there. i am not fond of bleeding all over everything, but at the same time, my poker face is awful. my feelings are on my sleeve all the time. this is a small explanation as to why i haven't been updating as much as i want. there are so many drafts written that i haven't hit publish on. i strive to be open and honest about my life, the good, the bad, record memories, happenings, triumphs, the stuff i work at every single day to make peace with, the reality and multi-faceted layers of cystinosis. the balance is tricky; my life is so so GOOD, however there are many quiet wars happening daily that I don't talk about and i cannot tolerate pity from others, because there have been endless divine interventions that have occurred for me to be writing this right now.

the truth is, this summer was the second most painful of my life. it hurt to venture where i had to go personally, spiritually, emotionally... but i see now it was vital to so many pieces of where my life is now. growth is no joke; the authentic stuff that rattles you to the core is not a clean, easily navigated path. but oh the grace i found at the other side of it all. the lessons i am still digesting, ironing out, making pretty and putting into play. sometimes something really great and wonderful has to be torn down, bit by heartbreaking bit, utterly and completely, so that it can be replaced with something more pristine, more lasting, more intentional.

i found out a few weeks ago that a certain virus is active (again) in my body. a virus i battled for years after my kidney transplant. it eventually led to all of my anti- rejection medications being stopped. technically, when you have an organ transplant, you are supposed to take these drugs for the rest of your life, so that your immune system doesn't attack the transplanted organ and start to reject it. i was having such a difficult time with this virus (10 years ago) that my pediatric nephrology and infectious disease team decided it best for me to try going off all of these drugs to give my immune system strength to fight the virus. basically, i had to risk losing my kidney to get the virus under control. it was causing so many problems, the biggest of all being all my tests were pointing to the fact i had developed lymphoma from the virus, except that i had not. it feels like a small thing now, but it has led me to being off all anti-rejection medications for over 10 years now. i know in my heart of hearts that this is why sookie is alive and breathing and laughing here with us all today. there are a few anti-rejection drugs that are safe to take during pregnancy, but it is all such a fine balance.

exhaustion is an old friend and a huge obstacle right now. life doesn't slow down and i don't want it to, but at the same time i have to make sacrifices to rest. that is the only action i can take right now. because i am not taking anti-rejection drugs, my immune system should be able to handle all of this. should is an important word. ::wink::
early next week i will have more blood work and depending how those results looks, perhaps a picc line (kind of like an IV that can be in for months at a time, not ideal, but there are worse things!) to deliver intravenous antibiotics. obviously i don't want that, but if it is action toward more energy, a happier momma, and a more joyful little family all around? i'm all for it. i'm tough, i've had two of them before. ;)

to have all of this staring at me again isn't easy. it was a long tough fight before, and now here we are 10 plus years later, i am a mother and i am needed so fiercely by our girl.

but there are endless victories! this forced down time has resulted in me truly recognizing the power of being present, being intentional. when you take meticulous care to be deliberate with your time, it creates true focus. i've learned that in a big way these last several weeks.

when you whole heartedly embrace the good and celebrate every little nugget of joy, it gives the good so much more weight and power. this little girl of ours is a sheer delight. she is spreading her wings, voicing her opinions, making her passions known to every creature in this world, from the the tiny potato bugs in the driveway to the deer in the mountains. i look at her and see myself, i look at her and my body rallies to march on, i look at her and vow to fuel her imagination every chance i get. it crushes me when i have to miss out on one second of her life, but i remind myself it could be worse, and more difficult, if i end up on the hospital. so we shift and adapt, my mom and dad always step up when we need them and that is a blessing and i gift i don't take lightly.

and if i need a picc line next week? i will incorporate it into my halloween costume somehow! mummy with pink hair anyone? ;)

happy friday!
find the lessons in your challenges.
find the good in your struggles.
embrace the perspective in your obstacles.

18 October 2012

frogs, dinosaurs, & organ donation

18 years ago today, my momma gave me life for a second time when she donated her kidney to me.

today, i'm hanging out with my girl & a frog. ;)

twirly swirly fabulous how that all worked out, isn't it?
(of course it isn't that cut and dry, but the big picture baby, the big picture!)

last night r came to bed late, he was up into the wee hours of the morning working on a new app. he said there was a dinosaur on his pillow and it made him laugh. those nights when he comes to bed late and i wake up just enough to remember his gesture of squeezing my hand as a goodnight toast? those nights are the little things that make up the big things that you remember when your life flashes before your very eyes.

& yes, my life has flashed before my eyes multiple times before.

oh yeah? the above photo? i have pink hair. as of yesterday. because life is short.

all of this? the dinosaur on the pillow, the hand holding at 2 am, the throwing caution to the wind and taking the leap by getting pink streaks in my hair? none of it would have been possible without organ donation, my life would have ended at 11 years old. yes, it was my mother, but oh it is SUCH a remarkable thing and still has the divine power to render me speechless with fascination. the fact that this kidney survived a pregnancy is one of the BIGGEST blessings of my story.

tell me, are YOU an organ donor?