23 November 2012

dear world, thank you.

dear world,
thank you.
this year has been one of the hardest to date in my 29 years here.
i'm happy for that. it has shown me how capable i am.
dear world,
...thank you for the love.
the pulsing, forceful, overwhelming love that propels me forward into the future.

the support.
the people who lift us up when things feel like they are crumbling.
our family who cheers with us when there are huge victories,
because having people to share triumphs with is just as important as facing the obstacles.
thank you for this beautiful little girl.
this spunky fairy
who teaches me to fight the good fight.
every single day.
thank you for one functioning kidney. (one out of three isn't bad, enh? ;)
legs that are capable of putting one foot in front of the other.
hands that are strong enough to type,
cut vegetables and braid hair.
eyes that have the gift of sight. (still!)

my thanksgiving heart. i couldn't eat turkey or stuffing or mashed potatoes (all my favorites), but there was an urging to dig deep for gratitude yesterday and i eventually answered it. thankful to the universe for pushing my grumpy, stubborn heart to new depths.

winner of the cystinosis fundraiser giveaway: frankie m.

linking up with from mrs to mama

17 November 2012

thee networking blog hop {november edition}

Are you ready to network?? Are you prepared to make some new bloggy friends?? Well, here's your chance!

15 November 2012

little specks of hope

the weekend was good to us! bringing in freezing temperatures and snow but also scooping us up in her hands as she said "be quiet, be still, make yourself cozy, revel in the magic of your little family."

we did just that.

(yes, my weekends speak to me and are female most of the time. aren't yours?)

friday night was a dreamy visit to look at a house. it was an older home and filled with charm. the freshly fallen snow cast a soft christmas feel over everything. it was cozy and exciting to imagine our little family living out our days there! while it wasn't the house for us, i love that burst of passion that soars through my heart when rory tells me he found a good one. who knows if we will find a house before the end of the year. our house hunting has been an extremely long journey, filled with detours, potholes, and dirt roads...but oh what an adventure! this house had so much character and reignited that desire in me to find a place i can fill with whimsy for sookie. it also reminded me the smallest little speck of hope can turn into a roaring unstoppable force within minutes. i need to remember that for all facets of my life!

saturday we were lazy and filled the day with cuddles, snuggles, family tickle wars and sweet kisses. i ventured outside with sook where she decided to have a snow ...and MUD party! perfect.

i adore seeing her love for nature contrasted sharply up against her intense love of girly clothing. i envy this kiddo's wardrobe, i kid you not! ha. i love that she isn't afraid to get dirty exploring her surroundings. i love that she wants to know every little thing about this wonderful world. i love that she views all bugs as instant best friends and doesn't bat an eyelash when she sees a snake, but whips her lightning quick hands into action to catch a new buddy. (she caught about four snakes this summer in our front yard!)

we went on an adventure to the children's museum on sunday. that place flames my inner child and endless curiosity. i had as much fun as sook did and I believe rory, and my mom and dad did too! you can't help but let go and indulge in the wonder of play when you are surrounded with prompts and props! when my dad started organizing the giant play kitchen, i burst into a fit of giggles.

this week has been more blood tests to stay on top of things, to be very cautious and make sure i don't have lymphoma, to check my inflammation markers, to run liver functions. all that happy stuff! tuesday i was struggling to get along with reality, so finally i simply dropped everything and went to a movie with sookie and my momma. that little escape turned out to be exactly what i needed to get my big picture focus back. i like it when i listen to my inner authentic self, she never has an evil ulterior motive. she wants happiness, pure and simple; and for me to keep my eyes and energy focused on the prizes.

we are holding on to little slivers of hope today; that my car will be fixed so i can have it when i head back up to the hospital (a 45 minute drive) on monday morning. that we can pinpoint all this chest and abdominal pain i've been having lately. that my labs come back all within normal range. i'm also being a little greedy and wishing that i will get into a study at the NIH in bethesda, maryland, for an experimental treatment for muscle wasting in people with cystinosis. 

crossed fingers today and keeping our focus on the big picture!

what are YOU hoping for today?

09 November 2012

the front row (life lessons from pinterest)

there was an image on pinterest that screamed, "psst hey! look at me!" it showcased a roller coaster and the difference in the facial expressions between the people inhabiting the front row and those in the third row. front row peeps were filled with glee, their smiles brimming with zest for life. their mouths so excited, you could practically hear their squeals of delight bouncing from the photo. third row? straight faces, silent expressions, no grand gesture of fun. stuck on survival mode.

i want to live every day of my life on the front row.

on tuesday i woke up with a grand appreciation for the blessing of greeting another day. there is something so monumental about another day that is not lost on me. there was a play date at the aquarium and a pint sized redhead with an intense interest in sharks. there was also sharp pain in my left knee. chest pains from my gallstones. crazy nausea i should be better equipped to handle by now. a thyroid headache. (i need to have my TSH levels checked.) swollen and aching lymph nodes from EBVand possibly CMV as well. i came so close to calling it a home day. i hurt, literally everywhere. the more i thought about it, the more overwhelmed i felt trying to navigate my way through this silly stuff happening at once. but truly? it isn't that much. i'll deal.

you've got to get up every morning
with a smile on your face
and show the world
all the love in your heart
{carole king; beautiful}

every day is halloween when you are sookie ;)

i put my big girl panties (and my combat boots and some armor for good measure) on. we made shadow puppets in the driveway and my heart leapt as sookie's eyes were transformed with whimsy. we saw a unicorn fish swim with the likes of a sea turtle. (YES. a.unicorn.fish!) we ooooed over disturbingly brightly colored poisonous frogs. sookie remarked it was a "bee frog" because it was yellow and black. sookie touched a shark (and a stingray!) and told me they both "felt like frawberries." everything lately feels and smells like frawberries. (strawberries) we had a leaf party in poppa and glamma's backyard.

wednesday was new friends and swings and a stunning fall morning at the park. lunch with daddy. costco wandering adventures where we didn't buy anything, but i shared the huge, important life lesson that if you are a good girl, sometimes they give you little tastes of free food. (she was all over this!) we ventured for lunch at one of our favorite places. later in the evening we painted a jungle scene, colors everywhere, adam durtiz singing, our noses smashed into each other and oh, it was a moment. one of those isthisreallymylifei'msostinkinhappyrightnow kind of moments in which you want to freeze it and put into a sparkly jar. ;)

the days when it is harder and feels downright impossible to push through your obstacles, those days are when everything tastes sweeter. every little gift, every little laugh, every little victory.