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.

Mormon Hanukkah

 {via}

We are home.

It feels good.

As sad as I was to say goodbye to members of my Hampton and Cystinosis families, I was beginning to feel slightly gypsy-esque.

Veggie bacon, coffee, wheat toast with low sugar organic wild plum jam.

A trip to Target to replenish groceries. 

So simple, but my big, bold reminder of this incredible little family we have created.  

Together.

My favorite dachshund sprinting across freshly cut grass, most likely worried we are going to leave him again.

I am addicted to the new sense of wonder and enthusiasm that comes with a long, love and life filled trip. De-clutter. Our house. My head. My heart. Life. Simplify. My mantra for the last few weeks of July and into August. We've been manic house cleaners since we've been back; pictures that have sat in my bathroom for several months are finally hanging confidently on the wall, furniture has been rearranged, spider webs on the front porch have been washed away. Rory is the best. I look through photos and try to form the words to accurately describe these feelings before I hit my inevitable emotional exhaustion and the guaranteed subsequent post Cystinosis conference patch of sadness in which I want to hang out in bed all day, turn my brain off, and watch Days of Our Lives. For some reason, my problems seem sane when compared to theirs. Ha! It is a good thing I have my little ball of light to remind me to get over myself, see the joy and giggle. Always giggle.

I hope you enjoyed the big jumps; chasing your dreams guest blogger series. I hope the stories moved you to take your next leap of faith. I am incredibly thankful to everyone who participated and am honored to have their words interwoven as a part of this project! A few quick links if you missed any:

{Ashley LeMieux from The Shine Project}

{Leaps of Faith by Clare of Never Niche}

{Casey Wiegand from The Wiegands} 

{Take The Plunge by Shelby of Shelby Lately}

{Little Miss Momma's Life List} 

{Jessica Jondle author of Roller Skating with Rickets} 

{Hope Whispers by Becky} 

{Do What You Love By Rory} 

 

Today is known as Pioneer Day  here in Utah. It is celebrated with many of the same happenings as the 4th; barbecues, parades, fireworks and the like. This year we took it easy to catch up on the mounds of laundry acquired during our trip. Although the evening was perfect with fireworks done close by and our funny little neighbor serenading us with his Justin Bieber covers. Too funny! Several years ago my mom and I were shopping in the wonderful outlets of Park City. An out of town shopper asked the (obviously) California girl cashier about Pioneer day. Her response? "It is like a Mormon Hanukkah." I still giggle ridiculously at this. (I am not Mormon, so I sincerely hope this does  not offend anyone, as it is all in fun and quite silly how uninformed some people can be! Just wanted to make that clear.) Probably the worst description I have ever heard. But funny? Yes. Hilarious I think. So happy Mormon Hanukkah to you and yours. :)

xo.