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.

9 comments :

  1. I have no words for this. No words. I am so glad, so beyond thankful, that you get to be a mama.

    Wishing you a happy Thanksgiving.

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  2. Si much to handle, so much on your mind.......just give that sweet little girl a big hug when you are in doubt.

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  3. I don't even know what to say to this, because nothing seems like it will adequately help.

    You and your whole family will be in my prayers.


    Anna

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  4. Wow. This is powerful and raw and honest and refreshing and inspiring and real and beautiful. Thank you for sharing your story. I can't wait to follow along.

    Blessings,
    Mae

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  5. Since I've had MPA, the thing I have been thinking of every single day is "I'm not going to die tomorrow!" :)

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  6. thanks for sharing the inspirational post, in my thoughts! i'd love for you to stop by www.thelovelypoppy.com and check out some of the new tutorials and the giveaway going on. xoxo nicole

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  7. This reduced me to tears, you have such a way with words. You're a beautiful person and it's people like you who make a difference in this world. You are stronger than lots of people i know who have nothing to complain about. you find beauty in the simplest of things and you're so courageous. would just like to tell you, you are a true inspiration!

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  8. wow, you are amazing. just found your blog through the follower fest at the wiegand's. im your newest follower!

    XO
    erin

    sweetnessitself.blogspot.com
    {come visit me!}

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