30 April 2012

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.

18 April 2012

when life gives you lemons

...in the form of bringing your own mortality bubbling to your every surface and crashing down the walls of reality:

you cook dinner
you dance in the rain
you draw a happy yellow sun
with sidewalk chalk
you have indoor fruit breakfast picnics
on fake easter grass
you paint your girl's toes with pink glitter
while the rain showers down outside

you fall back to tried and true comforts
while building your way into new ones
new magazines
diet coke
american idol
sassy sandals
bright blue skinny jeans
(oh and what the heck, yellow ones too)

all the big and all the little.

oh yeah.
and you...
go find a bra that fits.

hear me out.

i'm digging deeper.
thinking wider.
loving harder.

i've been doing a lot of thinking in the past week. a tremendous amount of wondering. more thinking, more wondering. copious amounts of soul searching. i don't want to gloss over the loss of someone my age in our cystinosis community. because we are so small it hits hard. it rocks my world. i haven't been able to take a day or two down and pick up and "move on". i think it is a good thing i haven't. i force myself to ask the tough questions, because when you face fear, it has a soft way of meeting you halfway. if i knew for certain this was the last year of my life, what would i be doing differently? i'm spending my days with our girl, and there is no where else i would rather be. that is my big picture.

but i'm making small changes. for me changes. for sookie changes. for rory changes. for our little family changes.

chia seeds and carrot juice as a new avenue to find some energy cystagon quickly zaps from me. it is, by far, my biggest health challenge right now, tolerating the doses i need to be on. walks around the neighborhood to clear my head, so our girl can bask in fresh air, to work my leg muscles, because they are strong and i want to keep them that way. i'm losing myself in steven tyler's memoir does the noise in my head bother you? and alice hoffman's the story sisters. two beings that i've always found comfort and connection in, no matter how different their personalities.

so, right. a bra that fits.

i ventured to victoria's secret today, put my pride away and had them measure me. (i say "put away my pride" because, really...i'm an adult. of COURSE i'm wearing the right bra size. phsaw!) apparently i've been wearing a bra two sizes too small. i.kid.you.not. when the girl told me what she was measuring me, i told her she was crazy. ladies, the power of a bra that fits properly is no joke. no joke at all. i swear sunlight burst through the clouds, angels sang, and doves rejoiced.

i feel like i can conquer the world now! ;)


the winner of the $25 shop credit to gussy sews is: emma from boy oh boy!
big big congrats!


we wish you a good week.
& the inspiration & motivation to go that extra mile to make it a great one!

11 April 2012

hope, heartache, happiness

hope, heartache, & happiness are doing a funny dance in my life right now. they coexist in a strange way.

it has been an intense 24 (or so) hours.
my brain is on overdrive.

yesterday afternoon at target i was making some purchases. the cashier was trying to talk me into signing up for their debit card and made a remark about how expensive diapers are and how it would help with that. i replied, "oh, our girl will be potty trained soon." then the target cashier responded with something about "when the next one comes along."

it stung.
it was like a punch.

i didn't have the heart to launch into our story. i didn't have the courage to tell her i am lucky to be alive after my pregnancy with sookie. i didn't have the audacity to tell her another pregnancy would kill me.

if only we could all think a little bit, before we speak. before we overstep boundaries and rub salt on a (very open) wound.

& the silly thing is, i'm used to these types of comments. i can usually shrug them off, let them slide off my back like a duck, pick up my girl, kiss her lovingly and move on.

but yesterday was different and i don't know why. i'm over it now though, keeping my chin up. i know how special our girl is, what an absolute miracle she is, and really i can be overly sensitive to stranger's comments.

kelle hampton was on the today show this morning. i'll shy away from commentary about the two women who "interviewed" her, but let's channel kelle's incredible attitude and pick out the best part. kelle's words. (as always) you can find beauty in whatever, out of heartache comes happiness.

this morning i found out a young woman with cystinosis, who was in her late 20s, passed away yesterday. she lived in the UK and i did not know her personally. but oh it hit me hard. 

i'm hesitant to put into words how something like this creates a mess of feelings in my heart and my soul. there is hope, gut wrenching heartache, survivor's guilt i am here when many with cystinosis are not. there is happiness i am still here. with my family, with my daughter. who is healthy. who is energetic. who is a force to be reckon with. there is so much happening behind the scenes in the cystinosis world that will lead to treatment for all of the known adult issues. i'm honored and blessed to be on the board of directors for the cystinosis research network where hard work is being done. there is tangible hope and that is more precious than anything. i received some news a few weeks ago that is so encouraging, it left me shaking with possibility and sobbing with gratitude. the kind of news that is awesome and forever life changing. 

then when someone my age passes away with this illness, it is like the floor is quickly ripped out from under you. it snaps me to attention. it reminds me how far we have to go. it makes my blood boil with anger and confusion. i'm propelled to spread awareness faster, to fundraise quicker and bigger and better, to fuel interest in solving the several obstacles associated with this condition.

the happiness? the happiness is the letting go of the unimportant. the past few months since my trip to the NIH i've been struggling with certain things i haven't blogged about and some i have, i finally feel (felt? hmm) like i'm turning a corner in all of it. simmering down to the core of life. it is powerful. it is tough. it hurts so good because i feel i've grown an incredible amount in a short span of time. oh, i stumble. but my chin quickly finds the way up toward the sun.

i suppose what i'm trying to say, is that although it may sound impossible, i have hope. i'm feeling heartache. and happiness abounds in our days.

how about you? are you feeling an equal amount of hope, heartache, happiness right now? is any one emotion outweighing the other? what are you hopeful about? what causes your heart to hurt? what fuels your happiness?

10 April 2012


let's face it. there are many known truths in the world and ruffles make everything better is one of them! they put a spring in your step, sass in your dance and love in your day!

i can't wait to share this giveaway today!

sweet maggie, of gussy sews is a gem of a gal. she is bursting with kindness, adorableness and talent! if you don't know that already, you are definitely missing out!

her shop offers:

today gussy is giving away a
$25 shop credit!

 you must be a GFC follower of my blog to enter! :)

+ first entry: visit Gussy's shop and come back here to leave a comment with your favorite item
+ second entry: subscribe to the gussy sews newsletter (https://app.e2ma.net/app/view:Join/signupId:1424919/acctId:1406000)
+ third entry: pin a product from the shop to a pinterest board
+ fourth entry: follow @ahappygirlcom on twitter

leave a separate comment for each please!

giveaway is open until 11 pm MST april 17th.
winner will be announced april 18th.

happy day! :)

08 April 2012

Crazy cystagon rambling

Tonight I let a school girl-esque giggle escape my lips as I licked a baby pink confection of sugarific proportions off my fingertips. (Okay, so it was strawberries and powdered sugar, but still!) And you can bet my fingertips were faded blue from eye dyeing adventures earlier in the evening.

There are those moments, when I'm in a haze (caused by Cystagon and momma exhaustion, two things that are so tough in combination, but alas,birth keeping me alive in their own right) I still wonder if I'm dreaming. Something asks me, what would you do if you woke up tomorrow and she was gone? Truly, what would you do? I scan back in the chapters of my life, I think of my most frightening medical moments, and really feel how INSANE it is that I am here, surrounded in beauty by this family. I am not an easy person to love and Rory does. It is all so crazy.

We took our girl on an Easter egg hunt today. I cried. I can't help it! The three of us, doing happy things, normal things, memory making things. The joy spills over into tears. I did it again earlier while helping the Easter bunny gather everything for her basket. The love is big, bold, made ten times more potent when I realize I AM SO LUCKY to be here with her on her 3rd Easter. Cue the celebratory tears.

I noticed the bite marks in her grilled cheese at lunch today. I wanted to take it home, buy a shadow box at ikea and frame that sucker. Yes, I'm a little bit crazy. I want to save everything she's ever touched and document every minute of it all. I know this all sounds nuts, but she is so full in my heart, the love I have for her is all encompassing. I want to find every creative avenue to show her this.

If this post looks wonky, I apologize. I will fix it tomorrow! I'm writing it on my phone because I'm in bed, three seconds away from passing out! I spent most of Thursday in bed, so of course, today I overdid it again to make up for lost time! I need to get some sleep.

love & light!
Happy Easter!

04 April 2012

on my heart

i am reminded daily of the importance of attitude. that, no matter what diagnosis you have been given in life, the power of your demeanor and the force behind your way of coping is worth so much.
so much more than whatever unfriendly forces your body is up against.

i am also reminded lately that the more i challenge myself, whether it be in facets of motherhood, personal strength, being a better partner to rory, emotional hurdles, physical obstacles, or something as simple as being more intentional with how i spend my time...the more i push myself, the more i learn. consequently, sometimes i urge myself forward to the extreme and have to take a step back.

after all,
i am 28.5 and still learning.

and that is okay.
it is awesome even.
yes that .5 is important.
because lately? well, lately there have been a slew of articles about cystinosis spreading word that everyone with the disorder "succumbs" by the age of 40.
this is not true and it really, truly is hurting many adults with the condition.
there are people in our community hoping to adopt. these claims are tainting their journey to adopt.
because agencies look at these articles and make assumptions based on the whole "not going to make it past 40" rhetoric.
because cystinosis is so rare, using statistics is tricky, messy, complicated. it never really paints the full picture.
i have a lot to say about this, the media, using dire outcomes to boost awareness...and so on and so forth. there are many problems with it. there are better ways.
i'll share more about this later. ;)

(my erin condren planner, oh I love it so!)

a few days ago, i coated those last final lashes with mascara as sook came running in my bedroom, coasting around the corner to my bathroom. (she had been outside with glamma.) her steps were infused with a special kind of enthusiasm. "mommy! mommy! flower! you!" she crashed into my legs holding a dandelion up to my face, as far as she could reach. just. for. me.

& this is a moment of my life with her i want to grasp tight, but not so quickly that it sifts right through the slats in my fingers. i want to be able to hold onto it long enough to savor it, to make its mark on the timeline of our time together side by side, but not too long that i lose it before i am ever able to truly capture it.

my ever present run myself ragged until i am completely drained of all energy approach to life has only been amped to the ten fold lately. i force myself to go go go go for as long as i possibly can, but then i have days when fatigue just takes over. it can be crazy. i like to find the hidden trinkets in this up and down dance. how cozy our bed is, how sookie reverts to infancy while asleep, the solace that exists in the quiet, the way my mind still races when my body needs her downtime.

monday was a busy day. we were everywhere. maid of honor dress fitting for me, easter dress hunt for our girl. nordstrom rack. carters. pei wei for lunch. david's bridal. zurchers. (because sookie couldn't exist another day without rubber ducks wearing bunny ears. of course!) petsmart (because we can't get a cat right now and little miss needed her kitty fix.) our favorite mall with h&m, gymboree, naartjie.

yesterday was a zombie momma day. oh boy. meds were conspiring against me in full force and i was functioning on about 4 hours of sleep. those days aren't so fun, but the lessons i get out of them motivate me to be better, stronger, and live bigger. it all evens out i think! ;)

tonight meds were kicking my behind and as i snuggled with our girl (she was asleep and rory was working late because we went as a family to see the easter bunny during the day!) in bed, i thought...how can i complain? i have red sour patch kids, salt & vinegar chips, and the night circus (have any of you read that book? wow!) it's all good.

hope your week is all good!