dear world, thank you.

dear world,
thank you.
this year has been one of the hardest to date in my 29 years here.
i'm happy for that. it has shown me how capable i am.
dear world,
...thank you for the love.
the pulsing, forceful, overwhelming love that propels me forward into the future.



the support.
the people who lift us up when things feel like they are crumbling.
our family who cheers with us when there are huge victories,
because having people to share triumphs with is just as important as facing the obstacles.
thank you for this beautiful little girl.
this spunky fairy
who teaches me to fight the good fight.
every single day.
thank you for one functioning kidney. (one out of three isn't bad, enh? ;)
legs that are capable of putting one foot in front of the other.
hands that are strong enough to type,
cut vegetables and braid hair.
eyes that have the gift of sight. (still!)



my thanksgiving heart. i couldn't eat turkey or stuffing or mashed potatoes (all my favorites), but there was an urging to dig deep for gratitude yesterday and i eventually answered it. thankful to the universe for pushing my grumpy, stubborn heart to new depths.
xoxo.

winner of the cystinosis fundraiser giveaway: frankie m.


linking up with from mrs to mama


thee networking blog hop {november edition}

Are you ready to network?? Are you prepared to make some new bloggy friends?? Well, here's your chance!


little specks of hope

the weekend was good to us! bringing in freezing temperatures and snow but also scooping us up in her hands as she said "be quiet, be still, make yourself cozy, revel in the magic of your little family."

we did just that.


(yes, my weekends speak to me and are female most of the time. aren't yours?)


friday night was a dreamy visit to look at a house. it was an older home and filled with charm. the freshly fallen snow cast a soft christmas feel over everything. it was cozy and exciting to imagine our little family living out our days there! while it wasn't the house for us, i love that burst of passion that soars through my heart when rory tells me he found a good one. who knows if we will find a house before the end of the year. our house hunting has been an extremely long journey, filled with detours, potholes, and dirt roads...but oh what an adventure! this house had so much character and reignited that desire in me to find a place i can fill with whimsy for sookie. it also reminded me the smallest little speck of hope can turn into a roaring unstoppable force within minutes. i need to remember that for all facets of my life!


saturday we were lazy and filled the day with cuddles, snuggles, family tickle wars and sweet kisses. i ventured outside with sook where she decided to have a snow ...and MUD party! perfect.







i adore seeing her love for nature contrasted sharply up against her intense love of girly clothing. i envy this kiddo's wardrobe, i kid you not! ha. i love that she isn't afraid to get dirty exploring her surroundings. i love that she wants to know every little thing about this wonderful world. i love that she views all bugs as instant best friends and doesn't bat an eyelash when she sees a snake, but whips her lightning quick hands into action to catch a new buddy. (she caught about four snakes this summer in our front yard!)








we went on an adventure to the children's museum on sunday. that place flames my inner child and endless curiosity. i had as much fun as sook did and I believe rory, and my mom and dad did too! you can't help but let go and indulge in the wonder of play when you are surrounded with prompts and props! when my dad started organizing the giant play kitchen, i burst into a fit of giggles.








this week has been more blood tests to stay on top of things, to be very cautious and make sure i don't have lymphoma, to check my inflammation markers, to run liver functions. all that happy stuff! tuesday i was struggling to get along with reality, so finally i simply dropped everything and went to a movie with sookie and my momma. that little escape turned out to be exactly what i needed to get my big picture focus back. i like it when i listen to my inner authentic self, she never has an evil ulterior motive. she wants happiness, pure and simple; and for me to keep my eyes and energy focused on the prizes.

we are holding on to little slivers of hope today; that my car will be fixed so i can have it when i head back up to the hospital (a 45 minute drive) on monday morning. that we can pinpoint all this chest and abdominal pain i've been having lately. that my labs come back all within normal range. i'm also being a little greedy and wishing that i will get into a study at the NIH in bethesda, maryland, for an experimental treatment for muscle wasting in people with cystinosis. 


crossed fingers today and keeping our focus on the big picture!

what are YOU hoping for today?

the front row (life lessons from pinterest)

there was an image on pinterest that screamed, "psst hey! look at me!" it showcased a roller coaster and the difference in the facial expressions between the people inhabiting the front row and those in the third row. front row peeps were filled with glee, their smiles brimming with zest for life. their mouths so excited, you could practically hear their squeals of delight bouncing from the photo. third row? straight faces, silent expressions, no grand gesture of fun. stuck on survival mode.

i want to live every day of my life on the front row.






on tuesday i woke up with a grand appreciation for the blessing of greeting another day. there is something so monumental about another day that is not lost on me. there was a play date at the aquarium and a pint sized redhead with an intense interest in sharks. there was also sharp pain in my left knee. chest pains from my gallstones. crazy nausea i should be better equipped to handle by now. a thyroid headache. (i need to have my TSH levels checked.) swollen and aching lymph nodes from EBVand possibly CMV as well. i came so close to calling it a home day. i hurt, literally everywhere. the more i thought about it, the more overwhelmed i felt trying to navigate my way through this silly stuff happening at once. but truly? it isn't that much. i'll deal.

you've got to get up every morning
with a smile on your face
and show the world
all the love in your heart
{carole king; beautiful}


every day is halloween when you are sookie ;)


i put my big girl panties (and my combat boots and some armor for good measure) on. we made shadow puppets in the driveway and my heart leapt as sookie's eyes were transformed with whimsy. we saw a unicorn fish swim with the likes of a sea turtle. (YES. a.unicorn.fish!) we ooooed over disturbingly brightly colored poisonous frogs. sookie remarked it was a "bee frog" because it was yellow and black. sookie touched a shark (and a stingray!) and told me they both "felt like frawberries." everything lately feels and smells like frawberries. (strawberries) we had a leaf party in poppa and glamma's backyard.





wednesday was new friends and swings and a stunning fall morning at the park. lunch with daddy. costco wandering adventures where we didn't buy anything, but i shared the huge, important life lesson that if you are a good girl, sometimes they give you little tastes of free food. (she was all over this!) we ventured for lunch at one of our favorite places. later in the evening we painted a jungle scene, colors everywhere, adam durtiz singing, our noses smashed into each other and oh, it was a moment. one of those isthisreallymylifei'msostinkinhappyrightnow kind of moments in which you want to freeze it and put into a sparkly jar. ;)

the days when it is harder and feels downright impossible to push through your obstacles, those days are when everything tastes sweeter. every little gift, every little laugh, every little victory.

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
Appdicted
(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
from
(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





TO ENTER TO WIN EVERYTHING ABOVE:

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.



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.


nope.
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.





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!
:)

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.

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?


somewhere over the rainbow



i get really happy when i'm blessed with sharing in the sacred moments of watching sookie fall asleep. there is something so other worldly about it. watching the calm envelop a little being who is high spirited and strong willed every single moment when she is awake. i can't help but feel the magic of it all, witnessing the peace take over her curious soul is simply divine.


kenley's 15th birthday party



last week was things around here are pure and utter insanity. the only way to live, right? rory has been working non-stop the past several weeks; 14 to 16 hour days, 7 days a week, building two new apps that will be in the app store soon. (i.am.so.thrilled to share them. really his best yet!!) how did i get so lucky to live life alongside a creative genius? also getting all of his other apps ready for the launch of the iphone 5 and the new iOS 6. he was also out of town for 5 whole days and of course, i came down with some insane virus or something the day after he left. i'm still battling it and not quite sure what is going on, so there is blood work and more doctor appointments and lots of prayers my kidney is working!


reunited with daddy after his trip

there have been two deaths in our cystinosis family in the past week. two that i know of, of course there are more, but it never stings any less. a 42 year old man who was indeed, a true pioneer in the scope of living with this, and a 10 year old little girl. her story so similar to my own, that i could not finish the article on her sweet life because i was shaking uncontrollably. it is never easy to hear this kind of news and the span in between their ages is not lost on me...cystinosis is so unpredictable and you truly never know what will happen.

so we bend and sway and shift and adapt. there is so incredibly much i want to teach sookie. so much i want to give her. so much i want to show her. it can be horribly hard when i literally do not have the energy to get out of bed. it is easy for me to get down on myself on those days...i just crave to make every day of her life magical and when i can't take her on adventures, it hurts.



she's obsessed with momma's shoes


but i know deep down, in my bones and in my heart of hearts; i'm an amazing mother. i ache to show her how fantastic the world is, that every day holds such power of grace and new beginnings, how fabulous life is, that telling someone "i'm loving you" can be so much more powerful than the norm of "i love you". that organic veggies are superfood for your mind, body, and spirit, but also that sometimes it is too much fun to have ice cream and rainbow nerds for breakfast. that choosing joy is not always easy, but the power is always within reach.


hello monday: threw away all her excuses

hello monday.

hello to my new goal of going for a walk every morning.

hello to pushing myself to new heights.

hello to baby in the buff sitting in daddy's guitar case.



hello to cherishing every aspect of your neighborhood, because you don't know how much longer you will inhabit it.

hello to wanting, aching, to make your legs stronger.

hello to indulging in your inner adorable ham.






hello to sushi and mango white tea at the splash pad.

hello to hanging onto summer with every fiber in your being.

hello to loving bigger.
hello to loving better.
hello to loving with reckless abandon.

hello to jumping up and down like a wild monkey (as opposed to a tame, housebroken monkey, hahaha) when your girl does her business in the toilet.

hello to letting her run around the park barefoot.

hello to roasting marshmallows in glamma and poppa's backyard.
hello to soft rain falling peacefully.
hello to double rainbows.

hello to purple fairy wings, a glow in the dark "crown", and potato bugs in a pink bowl.





hello to my new technique of dealing with tempter tantrums:
dancing to "walk it out" until she has no choice but to laugh at me and join my antics.

hello to waffle love, two saturdays in a row.
(a sinfully delicious gourmet waffle truck that drives around provo to make your tummy happy!)






hello to bright blue skirts and sunshine yellow flowers.





hello to adding fairy dust to multigrain blueberry pancakes in the form of sprinkles.

hello to the queen of the woods.





hello to the top of the world, with poppa.





hello to throwing away all of my excuses, to saying yes. to life, to people, to experiences, to love, even to difficult situations. i truly have control over how my life will be, and that is terrifyingly beautiful! start saying yes to life and amazing things will happen. throw away your excuses. this is your one wild and precious story. 





(post inspired by lisa leonard's series. linking up with her as well!)


what are you saying hello to this week? 


one foot in front of the other


on friday, i had an early morning nephrology appointment. this was only my second time seeing my new kidney doctor and i'm still getting used to working with her. and that is exactly what i think a patient and doctor relationship should be, working together. to shed a little light, i am the only person with cystinosis she has ever met. i requested a prescription for a supplement that could potentially help slow down the hand and esophageal muscle wasting i have going on. it is an endless balancing act to push forward to try different things without doing harm in other areas of my body. i'm praying, crossing my fingers, and wishing on stars, that my levels of this amino acid are low so that i can not only acquire a prescription for this, but get my insurance to cover it. i just want to know i pushed the envelope and tried everything humanly possible in this fight against muscle wasting, because it is all happening so quickly.

sookie was such a trooper for my appointment and blood draw! thank goodness for my momma and her boundless help with everything. the good stuff? my kidney function is great. my glucose levels are within normal range so i don't have diabetes! (which has been a concern for past 9 months or so and is common in adults with cystinosis) my sodium is back on track as well, which is a huge, giant, monstrous relief. (oh yeah, i haven't written about how i had to leave my best friend's wedding in may in an ambulance. i'll finish that entry soon! ;)

we celebrated all this good stuff by exploring a new park!




i love to sit back and simply watch our girl navigate this crazy world we live in. i take careful notes of what i've done well as a mother and what i need to work harder on.

this summer has been...so full. packed to the brim with heartbreak, triumph, spinning in circles, lots of serious soul searching talks between my head and my heart and my old self and my momma self. i apologize for being cryptic, but life is a lot of chaos in the here and now. i've had to really get down to the core of it all and take root in the notion of a new day, wow am i grateful to be alive. one foot in front of the other.

"I beg you... to have patience with everything unresolved in your heart and try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don't search for the answers, which could not be given you now, because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without ever noticing it, live your way into the answer." -Rainer Maria Rilke

happy end of july to you!


we write to taste life twice

this need i have to write, to document, to record...well, it is big. often bigger than me. i've felt unsettled lately that the lack of writing here doesn't reflect the enormity of what has been happening in our lives. there is no doubt, a lot. a lot of life swinging from every corner of our world in these boxes that mark off the days. big things. important things. milestone variety things! and there are the little things i cherish, i ache for, every pumping vein in my body dances for: like how a week or so ago, our entire front porch was an dazzling array of haphazard chalk colors courtesy of a budding two year old artist. she made the discovery the hues were intensified when dipped in water and whoosh, away she went with creativity and passion. the sweetest thing? the rainbow pigmented little tiny foot prints.




our little miss is growing, learning, truly blossoming. her hair is nearly reaching her lower back. she runs and skips with ease. her movements are more deliberate. she says hair with a southern accent. her take on dinosaur is the ever adorable, dinosume. her words have evolved into sentences. long, fast, information packed sentences. she is navigating the waters of complex emotions. i remind myself often that i am capable of showing her how to act like a lady, but at the same time fight with an intense fervor for what she believes in. she always has a kind word when daddy sneezes, or when she senses i am upset. bless you daddy. and it's okay momma. 


but the best ever?

a completely unprompted:
i la lou mommy.
(i love you mommy.)


that is how i know i'm doing something right.




this summer feels epic, what with the weddings and the parties and the music and the people and the mingling and the sacred dance of life. two of my favorite artists (john mayer and brandi carlile) are releasing new albums and in my heart that signifies new exploding memories that will be set to fresh lyrics that make me shiver with wonder and agreement. i love that music can do that to you. i love that music does that to a soul.

i feel good that there are things that need to change. i feel great that every.single.day i'm learning ways to become a more at peace version of myself. i feel a deep gratitude that i am the one who has been entrusted with showing our girl how beautiful the world is. i feel wonderful that r and i both want to love better.

it is all on the up & up baby! :)



always breathing, always loving

yesterday morning the sweet sounds of john mayer's new album born and raised was streaming through the air, and sookie was happily splashing in the bath as i helped her count her various ducks and ducks as incognito cats, puppies, and bunnies.


in, short? 
it was wonderful.


we high tailed it to the park yesterday afternoon, in search of refuge from the ordinary. i noticed the contrast of the sunshine yellow dandelion against our pale pink patchwork quilt, and the contradictory scene of a girl decorated with a polka dot party dress, gleefully throwing mud up into the heavens.


her vocabulary is exploding more and more every split second. she amazes me with her fierce determination to live life the way she intends. i take drops of her courage into my bones and remind myself everything she is, and in turn, everything that i am as well.


these days are busy and fleeting and pushing and propelling and hard and fast and challenging and full and blissful.


the other night i woke at 4 am to take my cystagon. i put a dose of cysteamine eyedrops in my itchy burning eyes. i crawled back into bed, put my hand on sookie's stomach, buried my nose on her arm, and sobbed. 


big, fat tears full of thanks.




















i've had an emergency root canal done over the last few weeks. (they had to do it in parts because the tooth was so far gone.) my first one ever. so crazy! the obstacle that made it the toughest was my swallowing issues. having a million dental related things in my mouth, keeping it open for an hour and a half, and trying not to choke on my own saliva, well it was quite the adventure. it was a reminder things are changing and i need to fight my hardest to adapt. by the time it was all over i felt like a deserved a trophy. ha! what doesn't kill you makes you stronger!

a few hours after the first day they worked on it, we went exploring the mountains. not the best idea, but sometimes you have to take life by the hands and say, come on, let's do this. NO EXCUSES.






my third mother's day was built up of three of my favorite adjectives: full, simple, and poignant.
little things can be indulgent, a lesson that never gets old when you rediscover the power behind small pleasures. i (finally) went to have my much neglected hair trimmed. my cousin thought i was cheating on her with another hairdresser because it had been so long. ha. after a whirlwind of a week at gLockets (our business we started of glass lockets that hold birthstone charms) headquarters, my awesome neighbor afton and i snuck away from our kids and men to have pedicures and pick up thai food. it was quick but incredibly refreshing! we were on a local utah morning show called good things utah a few days before mother's day and were slammed with orders! it was a rush and stressful and wonderful and insanely busy!

rory and sookie picked up some flowers to brighten up the front of the house. i love the instant cheery outlook of our porch now! roar also cleaned the house and shampooed the carpets. such kind gestures from my loves! mother's day morning i spent feeling lousy from cystagon and kept waiting for an energy burst that never came. i picked myself up and on the way to our favorite brunch place, my mom called them only to find out they had plans to close in the next 5 minutes. i had to laugh! we ended up at red rocks, an equally delicious and fabulous choice. ;)

holidays are complicated in the 6 years since my sister has been gone. especially mother's day. i miss her so much my body aches, but i recognize the weight of the extreme gift of motherhood. it is a day i miss my grandma k intensely as well. but we celebrated what we do have, and that is so very much.


science and progress do not speak as loud as my heart

i love the endless learning opportunities life presents. i love that i think i know a lot, when really, i have so much to learn still.


i love that i get excited over silly things, like entering in coke points online. (dude, they had magazine subscriptions last time i checked! i am such a sucker for paying the ridiculous amount per issue at the target checkout, knowing full well it is so much cheaper to put in the little effort required to pay for the whole year subscription.)


i love that even though not being able to breastfeed was such a tough journey for me, i (sometimes) miss making bottles for our girl.


i love sundays; having rory home, hgtv, sookie's laugher enriching my ears and this house and brunch of potatoes with olive oil, rosemary, & garlic, scrambled eggs with red, yellow, and green peppers, toast with honey, pretend (veggie) sausage patties, and strawberries.






i love that i am not the only one in the house insane enough to eat capers right out of the jar, by themselves. sook does it too and asks so sweetly, "mommy, more salties?"


i love buying a second copy of "snuggle puppy", because the first was so adored and used.


my heart jumped into hypocrisy this week and i don't feel i can ever undo the damage. how is it i so quickly forget about the fact there were people who didn't agree with our decision to have sookie and put both of our lives at high risk in the process? i'm grateful for the big, bold, gut-wrechibgly necessary lessons i'm squeezing out of the happenings of these last few weeks. it might be a complete cliche, but the earth shattering, world altering, core shaking events sometimes provide us with the life and death wisdom we need to fuel ourselves to suck the marrow out of these precious days we are given. ♥




my momma, my girl, my grandpa.












happiness is a ketchup stained pink floyd t-shirt.


carrot juice mustaches.
turtles going down slides (turtles of the stuffed nature)
sidewalk chalk fairies.
dandelion wishes.








i want to go to disneyland with sookie this year. i want to collaborate on an app with rory, using my CLS knowledge. i want to print out oodles of instagram photos. i want big, bold moments of love so potent, it is heart exploding. i want noise. i want color. i want life.