i'm a warrior

hi!

i'm here. i'm alive! :)

it feels strange to go that long between updates. i started this blog for sookie, but i want to document this life for selfish reasons as well. i'm the first to admit that i'm a flawed woman and yes, the title of this blog is indeed a happy girl after sookie's vigor for each breath she exhales and inhales. therefore, i don't like to dwell on the many reasons i am a flawed girl.

i had an appointment with a new speech pathologist today.

but i didn't go.

i didn't have it in my heart to explain my situation to a stranger, that cystinosis is progressive and there is no rehabilitating lost esophageal muscles, then beg for a prescription for a medication that might assist in delaying the muscle wasting i am experiencing in my hands and swallowing muscles.

i went to five guys with my mom and sookie. i ate a giant bacon cheeseburger with EVERYTHING on it while sookie slept in my arms and the sunlight poured through the windows. i talked with my amazing momma about important stuff and silly things.

i was content in that moment.

life is too short.

i've definitely gained weight since november and my trip to NIH, but...there's a silver lining in this. the problems i've been having with swallowing have propelled me into this nirvana of savoring what i eat, letting go of the ridiculous standard of beauty of what my body needs to look like. and really? after a kidney transplant (my mom's kidney is in the front of my abdomen, as they left my two original kidneys in) and a baby, skin has shifted. but oh the gifts my body has given me and the feats it has overcome! cherishing dear calories is my rainbow in all of this!

speaking of life being too short. look what arrived in the mail today! it was a sign; i skipped my appointment and my choose joy necklace came! (haha, just kidding!) i've been coveting this necklace ever since it first became available. ashley hackshaw of lil blue boo is a stranger to me, but has taught me so much in the last several months. her story is overwhelming and yet her attitude one of the brightest i've ever encountered. having endless medical bills myself, i loved that all proceeds from this necklace will go toward her health expenses. making peace with the fact i won't carry another baby has been a rocky road for me, and it has come as a startling surprise because i thought once sookie was here, healthy, the peace would come quick with the notion of you have one perfect miracle, that is all you need. so i connect on that sacred level with ashley. rory actually ordered me one before we made our impromptu vegas trip for valentine's weekend! he wanted to surprise me but i have been such a brat about it, pestering him, he finally had to tell me one was on the way for me. i'm blessed from the tips of my ears to my little toe to live life with this guy.

so, in all honesty, i'm feeling discouraged with certain things, but i'm not out for the count. there are many facets i need to fight for and perhaps i'm giving myself a few weeks to store up the guts, cultivate the quiet roar i will need to advocate and fight for my best days, from doctors who have never even treated anyone with cystinosis. and that all has to be okay. because it is my role right now and i finally get what an honor that is.

truly, so many things are on honor. a privilege. i'm healthy enough that i don't live with my parents. i'm capable of doing laundry! how awesome is that? i am bestowed the greatest gift ever...of TIME with my girl, to be her primary caregiver. my life is big and full and i have a to do list that grows and expands and i feel a jolt of c'mon baby, let's do this! each morning when i greet the sun with hope filled eyes.

my friend jess wrote this definition of cystinosis. i happened to find it today. i love her to pieces.

happy friday!
may you greet it with hope filled eyes!
xo.