i'm a little embarrassed how much i've been writing about my health lately. but it is on my heart and i aim to live an authentic life with no apologies. i am finding my way through this by spilling out a lot, all over everything...until i feel like i can pick it up and move on.
a few weeks ago, after physical therapy, i met Rory at his office to talk for a few minutes.
it had been an overwhelming and interesting drive home. during my appointment i had fully realized that the muscle wasting in my hands has indeed started.
muscle wasting occurs in adults with cystiniosis. there is really nothing that can be done to prevent or reverse it. the GOOD thing? it hasn't started to affect my strength in my hands yet. i can still open jars of pickles for a midnight snack. i can still wash sippy cups clean with a rigorous brushing. i can still braid my girl's hair while she pretends to read 'moo, baa, laa, laa, laa'. i get up every day and remind myself of everything than i can still do. i have to.
funny how it began awhile ago, but this day is etched in my story because it was when i faced the fact that it is happening.
and i've known all my life this would be the case. i don't know why it was so hard to accept it. i'm 28. it is what it is. i can be sad all i want, but that isn't going to do any good.
i'll be honest and admit i've been exceedingly weak lately emotionally. i've let fear win out over my courage. i've let the pain of this disease steal my hope for the right now. i've lost way too many minutes to worry of the future when i might not be able to independently do everything i need to do on a daily basis.
when i stood in the parking lot with Rory and showed him my hands, where the muscle has simply disappeared, he looked at me with his boundless kindness and said, "don't worry, it's just a ride."
which prompted me to have jem's 'just a ride' in my head for numerous days after this. :)
it was a moment of reality mixed with beautiful strength to continue to push forward. always wanting to accept this walking alongside grace, as opposed to running frantically with anger.
the words are bubbling over, straight out of every pore in my body. i will capture them all, in due time. oh i will.
can i simply say the past four weeks have been super charged with emotions, realizations, summoning courage with all i have and chasing down grace with which to be fully present with my joy, just as much as my pain.
however, right now? right now these lyrics sum up what i need to know. what my heart of hearts knows deep down. what i wish for all of us to always always remember. (jann arden is so unbelievably underrated.)
Right now somebody loves you Right now somebody dreams about you Right now somebody needs you
Right now somebody is proud of you Proud of you Right now somebody is calling your name Right now somebody is hoping you're well Right now somebody is feeling your shame Right now somebody cares if you live Right now somebody hears you Right now somebody knows who you are Right now someone is praying for you Right now someone believes in your heart Right now somebody wants to be your friend Right now somebody is thinking about you Right now someone is wondering where you are Right now you are a piece of it all A piece of it all A piece of it all You are a piece of it all
so much good stuff. so much joy abundant in the air i breathe every day. so much love bursting forth from the incredible, selfless, robust people i have in my life.
the good stuff is...
watching sookie and rory dance together, hearts perfectly in tune with each other. lunch date with my girl, just the two of us. (and perfecting my newest chipotle obsession; burrito bowl - brown rice, black beans, peppers and onions, chicken, hot salsa, corn salsa, sour cream, cheese, lettuce, guac. all of it. yes please.) fishing with poppa on his birthday.
big sunglasses only rivaled by the big toothy grins they inspire. fall football games. all natural "crayon rocks" on clearance at target, the vigor with which little chubby toddler hands promptly pick them up to let loose their master creations.
finally procuring a copy of green eggs and ham. making cookies on a sunday afternoon. flying high by way of swing.
the simplicity and somewhat contradicting beauty of fall leaves sprinkled across the lawn while i relish in the fact i wore sandals in late october.
finding solace in all of this good stuff.
what has been your good stuff from the past week?
i am only responsible for my own happiness, no one else's.
i'm going through some heavy emotional ...stuff.
as a result i've been thinking a lot about mantras.
what are your favorites?
what positive things do you tell yourself to lift your spirits?
what keeps you seeing through rose colored glasses when you feel like the weight of the world is on your shoulders?
multiple times a day i make sure to tell sookie she is smart, brave, strong, funny, important, loved, special.
i think i need to work harder at reminding myself of these things as well.
here's to a weekend where we are kind to ourselves.
my heart is thumping tonight with bold and potent excitement for things to come. in the same peaks and valleys, the softer, more subdued beats are quietly celebrating everything that has already come to pass.
that feels good.
17 years ago today, i was given a second chance at life through the wonders of kidney transplantation. my momma, the saint that she is, gave me life for a second time. while cystinosis is a complex and multi-layered disease that involves so much more than the kidneys, this event is one of those days i will never forget. by no means does a transplant "fix" cystinosis, (and this is something i have lived, practically my whole life trying to explain to some people who don't quite grasp this fact), but it has allowed me to move forward through my life in terms of being able to avoid dialysis completely thus far.
i remember so vividly being that eleven year old in that pre op room, making peace with the fact my life might be ending then, during that surgery. and i remember thinking, well...if this is it, then i've lived a good life. who does that? what eleven year old has thoughts like that?
apparently i do.
i've had several emails asking about how and where to donate to help cystinosis. i think a lot of the time i tend to sugarcoat the realities of this disease on this blog. i do not want to be a doom and gloom place, but there are some harsh realities i'm coming to terms with these last several weeks. i'm finding that balance and i'm loving all of you who have chose to follow me on this journey. my heart feels like it might burst from all of this support. there is a link right HERE to donate to the cystinosis research network if you feel so inspired. i thank you from the bottom of my heart. we are truly such a small group of people that it is difficult for me to convey. CRN is a passion of mine, i serve on the board of directors and am honored to be a part of changing lives, cultivating hope, and celebrating the now, all at the same time.
being silly today in the photo booth at the aquarium
tonight, as i think about the real battles i am up against, i simultaneously celebrate the wars i have already won. 17 years is so much more than i could have ever dreamed of with this kidney. ♥
Tegan and Sara are providing the soundtrack to our morning, the dryer is running with a comforting clack every now and then from the buttons on Daddy's jeans drying, we are celebrating another day here on this earth.
The skies are blue, it is supposed to be 70 degrees, tomorrow is my dad's birthday and there will be fajitas for diner tonight. Oh yes, there will be. The little things fuel me to find my courage to take on the big, not so fun stuff.
You could say I was delivered a fresh, shiny, new batch of creative juices when I saw this week's prompt in the Gussy Sews inspiration workshop. ;)
Red brings forth a dazzling array of thoughts, emotions, places, and pivotal times in my life.
Red reminds me of fall, a bright signal of change so bold the action itself explodes in color; a stunning reminder that sometimes we must surrender completely before we can begin again. There are instances when we must tumble down the mountain in order to start anew at the base. While the reasons are unclear, we must embrace them for everything they are worth.
Red is my team's (Utah Utes) color. I see it and cherish game days that have come and gone; die hard fans braving rain or snow, cold and wind, to cheer on their boys. Armed with kettle corn, steaming coffee, and high spirits, we become family for those 4 quarters as we hoot, holler, clap, and high five every positive happening on the field.
Red takes me back to that day when world shifted, when I began to believe again, when I knew for certain I had power in this world that has spent so much of my life telling me I don't. For some reason, red reminds me of the very first heartbeat I ever heard of my daughter's.
she has been in this world for over 20 months now, making it brighter every day. & yet i still can't grasp the enormity of the fact she is mine. ours.
i love waking up to her chants of "mommy mommy mommy".
i'd like to think i've done a stellar job of earning two new mommy badges in the past couple of weeks. one? balancing her 19 pound person on my hip while applying mascara with my other hand. now that? that takes talent folks. two? changing a poopy diaper in a bathroom stall with no available changing station; forcing us to be experts at improvisation and coaxing mommy to take a deep breath and dive right in. for the record, she was an absolute angel and such a good sport. she stood up, somewhat still (like she knew i really needed her cooperation at a time like this) and let me wipe her all clean, just like the little champ that she is. but oh my, it is slightly comical at how high my stress levels rose at something so silly, when there are much bigger life worries my heart needs to attend to right now.
i've been pondering the question of quality versus quantity of lifelately. alright, who am i kidding? it is a war that rages in my heart and heart on a daily basis. especially more so these days in light of my upcoming trip to NIH (National Institute of Health) next month. i have focused so much on never letting my health affect her life, but sometimes it does. sometimes we miss story time because i am too nauseous to be more than a 10 second sprint away from the bathroom. and i have to accept that. it is all a part of fiercely loving myself and embracing where i am; where we are as our little family of 3.
her laughter is a song so precious i want to crawl inside of it and live for infinity.
she eats tomatoes like apples these days; they are fresh and vibrant from poppa's garden and she bites into them with no apologies, juice cascading down her chin. she approaches life in this very same way. living out loud. so in tune with her inner self that the beauty of it makes me ache.
she also likes to eat dirt lately.
i'm so in love with her toddlerhood inquisitiveness, her fiery stubbornness to hold steadfast to what she wants, the way that lately, when she wants something, she simply grabs my hand to lead me there.
oh baby girl, i will follow you wherever you want to go. always & forever.
"Remembering that I'll be dead soon is the most important tool I've ever encountered to help me make the big choices in life. Because almost everything -- all external expectations, all pride, all fear of embarrassment or failure - these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart. ... Stay hungry. Stay foolish." Steve Jobs -- Stanford University commencement address, June 2005.
this man had a monstrous impact on my life.
yet i've never met him.
yesterday i made mental notes to remember how grounding the rain was, how excited i was to wear a pair of boots for the first time in a long while, the elation i felt picking out cheap fall crafts at hobby lobby with my girl, and the way ryan adams' songs jump into my veins and make themselves at home.
and then i heard the news about steve jobs.
this man, this absolute stranger, has blessed my family in a way that was life changing. because of his tenacity to attack his dreams, my sweetie was able to as well. there is nothing bigger than that. my daughter is in a place where daddy can spend a weekday morning with us and doesn't have to answer to a boss. he is not only working on his own terms, he is living on them as well. and oh hell yes, it was scary making that leap with him. but where we are now as a family? it is !@#$%^&* amazing. we have freedom. we have creativity bursting at every corner. we have daddy home for more than 48 hours a week. yes my medical expenses still tower over us, but we built our lives from the ground up, with dreams, with homemade love, with good old fashioned hard work. oh it got messy at times, everything might have been covered in dirt; but now? we're living life out loud with no erasers, no regrets, no dress rehearsals.
this speech of steve jobs' makes me turn everything around and want to write my memoir. right now. yesterday. a month ago. a year ago even.
what am i afraid of? what is holding me back? harsh criticism? not telling things the way they happened? sugar coating things? painting everything shades of gray? talking about the tragedy of losing my sister; something i touch on here and there on the blog, but not the way i want.
i think my two biggest fears are that a) no one will read it or b) i won't ever tell it.
rory reminds me all the time i need to tell my story.
...and you know steve is right. we all are dying, that is the final destination we all have in common. a thread that wraps us together, beyond our differences. fate doesn't pick who will die and who won't, she makes timelines that echo roller coasters where some precious and innocent souls will never get to walk into their first steps, while others float into their 90th year right alongside their childhood sweetheart.
which leads me to ask: what do you want to do with this one wild and precious life?
i'm on a mission to get into the top 20 for the 17th anniversary of my kidney transplant on october 18th. lofty? yes. but i've taken on lofty and won before. (wink)
would you vote for us? all you have to do is click the banner below and click the owl on the left. thank you SO much. when you do, please either email me or leave a comment and let me know how i can repay the favor. kindness is contagious.
way back when we started dating, i quickly showed rory the light and now he loves them as fiercely as i do.
there are emotional ties behind my passionate fandom; i had my kidney transplant at that hospital back in 1994, and i graduated from the college with my bachelor of science degree in human development and family studies with a child life emphasis.
two BIG life happenings and both at the same college/hospital/campus. i think it is a given we are such massive fans. ;)
this is what we wore for game day last weekend, even though we didn't attend the actual game. i own utes shirts with logos, but sometimes i like to just add a splash of red to celebrate my fandom. i don't wear red often because it clashed with my skin tone and hair, but this red skirt is quickly becoming one of my favorites; i get that pop of color but away from my face so i feel less self conscious.
fairly certain we will officially switch to mondays. what do you think? does that work better for those of you who want to link up? let me know!
the good stuff is...
my man's silhouette against a sunburst and wheat fields. story time at barnes & noble courtesy of daddy, with one little lone audience member, rapt with attention. brunch with the two souls i swear i have known forever (& a day). trying on sookie's teal peacoat and loving the contrast of it against her red curls. waking up in the mornings with a toddler smashing kisses into me and a dog cuddling with my neck.
my little grasshopper whisperer. lunch at the dear lizzie bistro. mini blue sunglasses and a rocking chair.
the tastes of fall dancing on my tongue; zucchini, squash and pears. the way a breeze picks up a gathering of yellow orange leaves and hurries them along as if they are tiny spastic ballerinas spinning every which way.
poppa playing in the sandbox with his girl. the beauty in the chaos that is a healthy, rambunctious, mess making toddler. the illusive promise of a new day. the way the clouds are scattered across a perfect end of september sky, while i sit at a streetlight and ponder the big questions.
a stack of 28 post it notes of things that rory loves about me, from my birthday. books with her frog. our bona fide scarecrow.
see? this is why i blog. feeling better already. would love to see your weekly gratitude posts and lists linked up in the comments! xo.
We ushered in this new month with antics well suited for a lazy Saturday. And while last weekend was a low key one as well, this one was oodles better due to the freedom from the virus that was wearing our girl down 7 days ago.
We indulged in college football and soaked up the very last bursts of sun pouring out from this remarkable summer. Sookie found a potato bug in the driveway, she squealed in delight, our big reminder to always see the joy, even in the smallest moments. Her glee was poignant. I ate it up.
We ventured to Hobby Lobby to surround ourselves with festive fall decor. We managed to find a scarecrow for less than $10 that was an actual, bona fide scarecrow. As in, a crow. He came to live with us, I couldn't resist. An Olivia lunchbox found its way to Sookie's arm, and while I am very careful about what I let her watch, that sassy little pig makes my heart happy. And? The lunchbox proudly proclaims in a celebratory red scripty font,"Every day is a big day."
Who can disagree with that? It is so true.
While the Utes lost, the night was filled with sweet October rain, a vibrant rainbow, and keeping Miss Sookie up way past her bedtime so she could visit and play with family.
Also, something to make your Monday happy; want to add new life to your fall wardrobe? Head on over to scenic gloryto win this gorgeous Stella & Dotinfinity charm necklace from me! :)