home.

with the news last week that my esophageal and other swallowing muscles have started wasting, (due to complications from cystinosis), my brain has gone to some very dark places since we have been home. while my heart has been silent, simply too tired, battered and bruised to find the courage to fight for the light. i think such a key component to thriving with any kind of serious illness is that even when it does start to strip you of your basic human functioning, you have to channel the rage and heartbreak of that into making your spirit stronger. you have to. because if you don't and you let yourself start to disintegrate? it isn't good and you miss out on the beautiful life that is yours and yours alone.


and to put it simply: i love food. food is awesome. i do not like being told what i can eat. i'm not giving up my favorites just yet.


however...


it was the first 40 or so pages of jodi picoult's 'sing you home' and the matt logelin piece in the latest issue of mamalode that made me stop the tears of self pity and lift my chin up toward the sun.


i've had 21 months, 3 weeks, 1 day, and 10 hours with a magical little being who has my DNA dancing throughout her body. this fact and this fact alone carries the weight that i should be able to face losing the basics of existing, like walking, talking, hearing, sight, eating anything with grace.

there is something law defying about flying from a dark east coast toward the light out west. chasing daylight. it goes against what nature says and i found the irony in the situation about where i am with my health. it is not lost on me the fact my kidney and my heart are both looking great, and they are two things that actually can be transplanted.

there is so much i want to share.

roar made me laugh in the middle of a breakdown a few days ago. i was asking him how other people dealing with the unimaginable find their strength. his response? "maybe she reads your blog."

ooof. point taken. listen to your own advice. choose laughter. choose happiness. choose beauty. always.

home is our girl sleeping soundly in her crib while orange stars are scattered across her ceiling. home is laughing at dinner, while she scoops up ranch with her bare hands, and seconds later, the tears falling fast over a silly train song (i promise to sing to you when all the music dies) sucker punching me right at the opportune moment. home is sunday night grocery runs to target. home is morning adventures outside. home is knowing who i can fall apart in front of, and who won't judge me for doing so. home is throwing all vanity into the clouds, because really? what is the point of eye makeup when you are doing eye drops fifteen times a day. (yes, i wish i was exaggerating.) home is sidewalk chalk in november, because that is how we roll. home is my girl dragging around a purse bigger than she is. home is indulging in a burger from five guys, because i'm stubborn and a certain doctor told me not to. i'm not even that big of a beef fan, but in this case i had something to prove and i was not backing down until the mission was accomplished. home is the thrill of a fresh new good book. home is all of the breakdown moments that led up to the giant one of: i.will.not.quit.

home is where i get back in tune and in step with my authentic self.


*******
a few housekeeping items:
the winner of the bip and bop giveaway is... chelsea !!!
nicole is graciously offering you sweet readers 15% off with coupon code happygirl


could you vote for us on top baby blogs? thank you SO so very much.


xo.

change for change

are you ready for something amazing?
something huge.
something that you can be a part of?

something that will bring us together?
something that will change lives?

 {image source}

ashley from the shine project is pushing us all forward and challenging us to be better, to give back, to band together to make a difference. all of this in the name of helping out people who truly deserve a second chance at their dreams.

this video will give you chills.




the change for change project is about helping inner city kids reach their full potential in this life; through means that they most likely wouldn't be able to experience otherwise. ashley's goal is to raise $20,000 for the shine project scholarship fund by october. these funds will go to four students at Cesar Chavez High School in Phoenix, Arizona. this endeavor has two parts and the first consists of change for change jars.

 

aren't they cute?
if you are interested in starting your own jar and also asking local businesses to support this project, please email ashley at ashley.theshineproject@gmail.com and she will send you more information! in addition, if you or someone you know would like to donate items for a silent auction to be held in october, please contact ashley about that as well. check out her post for more information if you would like.

i'm excited to see this change lives. ashley is such a good soul and a ray of sunshine! she will be guest posting here too in a few weeks. so that is incredibly wonderful! :)

share this on your blogs, facebook, twitter, everything. let's make this a success!

These Are The Days

These are the days I've dreamt of. These are the days I will remember. Two baths by two thirty in the afternoon because a little miss thought it would be fun to put yogurt in her hair instead of her mouth. These are the days she wakes up and upon seeing me, catapults her entire being on top of  my chest and neck. I return the robust affection by smashing my lips into her soft cheeks. These are the days she inhales veggie dogs and organic strawberries. These are the days her balance is showcasing her budding confidence. Her grin says it all; hey ma, look at me standing by myself. These are the days her pretend play capabilities are bursting forth into the atmosphere with every tea cup, dolly, and wheeled gear creature she gets her hands on. These are the days she is morphing into the future version of herself at such a rapid speed that my heart cries and sparks all in the same beat. These are the days she has a physical grip so strong on the material objects she thinks she must hold on to, that I pray she has that same kind of tenacity and passion for the people she loves and the dreams she plans.

These are the days of I love her more every day because every day there is more to love.

These are the days we have picnics with poppa on grateful dead blankets. These are the days this momma relishes in simple pleasures like creme brûlée shower gel, Kid Rock, and sushi. Even though none of these simple things fix the big messes, they somehow distract from it all for little moments in time, thus pushing the reminder on me that the only thing that is important is making peace with who I am. That is the only aspect of life I have control over.

These are the days of:
Her crawl has such attitude.
I know, it's like she always has a song in her head. 

These are the days when indulgent salt and vinegar potato chips and a bright green shirt with puffy, barely less than flamboyant sleeves, are enough to make the world seem brighter.

These are the days when I'm grumpy, Rory tells me "Your aura is constipated."

These are the days when we whisper to each other in bed. No, not sweet nothings, but awe of our daughter. I love her so much it scares me. I know, proof that unconditional 100% love exists.

These are the days of flashcards, Sookie proudly boosting the rocket flashcard to the sky, complete with sound effects. These are the days her naps are lasting longer, and momma is beyond grateful. These are the days of trying out big chunky crayons, and momma deciding it is a little too soon when there are bite marks on them and no scribbles on the pages. But it is okay, she will get there soon enough and then I will wish for the days when she was too little for coloring. These are the days of rain glistening on the kitchen window, french toast, eggs, and Diet Coke for dinner, and American Idol.

These are the days my soul is fulfilled with the simple sight of smiles behind a sippy cup.

These are the days I experience epiphanies on the swing at the park. I've been to lots of parks with a myriad of little ones over my years and years of being a nanny. But it is different with my own daughter. A few weeks ago it hit me so hard, with such a force that I almost had to go home because I felt emotionally depleted by one epic thought...I'm at the park with my biological daughter. Blink. I'm at the park. With my biological daughter. Blink. This is something I never ever thought would happen.

These are the days I'm living my own fairy tale. 

This Year

This year.
This magical year.
This challenging year.
This year I met the most fantastic human being I've ever had the honor of meeting.
This year I grew more tangled into the one I created her with.
This year I dug deeper and thought about things I never have before.
This year I questioned my decisions, our decisions, and the impact they would have on her life.
This year I became a different woman.
This year I found new pieces of myself.

There are multiple times a day when I stop and think, she knows so much more about life than I do. No, she isn't walking yet, but she has it all figured out. She smiles at me with the beams of someone who knows all the secrets of the universe.

My wish for her birthday? A fundraiser for the Cystinosis Research Network and big hope that I will be around to watch her grow up. CRN has been working diligently to improve the lives of those who live with Cystinosis. They have made tremendous strides in the last 15 years so that I can live bigger and better, and so can other members of my sweet Cystinosis family. My mother was a founding board member, and now I serve on the Board of Directors myself. My goal is $1,000; which is a lot to us because we do not receive any government funding for research. Because of that, the families and friends in our community must raise every single penny ourselves if we want improved medications that don't include one that destroys our GI systems and must be taken every 6 hours, or eye drops that are reccomended to be put in every hour to prevent blindness. I'm asking for a donation of $5, the price of a coffee from Starbucks. It truly doesn't take much to make a measurable difference. You can donate and read more HERE. If you feel so inspired, please share this on facebook, twitter, your blogs. I would love to see this reach people out there who have never even heard of Cystinosis. (Which is most of the population, but still.)

Thank you. 

1.1.11 (& I hear your laugh like a serenade)

1.1.11 and our girl is 11 months old today. I love it.

This morning after scrolling through hopeful and enthusiastic facebook status updates, I made the remark to Rory that it would be so fabulous if everyone treated each new day as if it is the start of a new year. If all human kind had the kind of fresh zest for life and positive eyes a new year encourages us to have.

2010 taught me to believe in the impossible because there was a tiny little girl with a fighting spirit and the heart of a warrior who really wanted to be a part of this world. 2010 also made me realize that even if it is the best year of your life, that doesn't mean it is going to be easy.

Rory made me this video for Christmas:



Makes me cry. Okay, sob would be a more accurate description. Honestly, this all still seems like a dream. A wonderfully busy, fast paced, enlightening, chaotic, inspiring, exhausting, fulfilling, enchanting dream.

November 2010 Goals Revisted/December Goals

(My fabulous friend Clare is the inspiration behind these goals of the month posts.) 

My November goals:

My November Goal is...to be happy. Yep that's it. I'm not stressing about pleasing everyone for Thanksgiving, I'm not obsessing about how clean my house is, or how much laundry I have to get done. I'm stealing smiles from my little girl. I'm not going to worry about my health. I'm just going to be happy, dang it!

I feel as though I'm doing a little better with this. That or I failed miserable at all of the above. One of the two. Of course I'm not always going to be carefree every minute of every day and completely forget about mundane things like laundry, and I think I'm always going to worry about my health, but that is life. Clare talked about this on her blog a little while ago and I realized if I was living my life as my perfect self, I would need 70 plus hours in a day. Not going to happen. I've come to the conclusion I always seem to struggle with balance. This has been a theme in my life ever since I can remember, why should it stop now that I've become a mother? I have this little theory that motherhood tends to magnify, intensify, and play on every personal issue and insecurity you had before you became a mom. I always want to be doing better, more, and quicker; but all with a smile on my face, love in my heart, and energy bursting from my veins.

  

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My December goals I realize need to be more tangible, measurable.  However, can I simply say peace.joy.love and be done with it?

Okay, I won't.

December goals:

Be a duck.

This is R's wisdom and my Dad's as well. There are both very zen individuals and honestly I need to start living life like both of them. The idea is to be a duck, and let everything people say just roll off my back so to speak. This is a grand idea in theory, but I'm an incredibly sensitive person and situations are complicated more by the details of exactly who is saying what about me. But really it should not matter. I have enough to worry about.

Re-read 'The Four Agreements'.

This book has some revolutionary ideas and is an eye opener, yet I find it difficult to truly practice it and live it out on a day to day basis. Goes back to the 'Be a duck' goal, that directly related to the agreement of 'Don't take everything personally', which I always do. The other three agreements are, 'Be Impeccable with Your Word', 'Don't Make Assumptions', and 'Always Do Your Best'. (Note to self: write an entire post dedicated to this book.) 

Donate clothes I don't wear anymore.

This is a big one. I like clothes. I like clothes a lot. I tire of them very quickly, but I tend to hang on to items I haven't worn in years simply because of the memories attached to them. I must convince myself the memories don't go away if the clothes are gone. Brilliant.

Peace.Joy.Love.

Yes, practice these three every day. In abundant quantities. Don't get caught up in the stress of the holidays. Focus on the fun, the good, the hope. Celebrate how much better Christmas is going to be this year, than it was last year. (Last year, three days before Christmas, after a scheduled non-stress test and an unscheduled ultrasound, they told us Sookie's left ventricle in her heart was measuring small.) I was devastated and had many ups and downs on Christmas.