one foot in front of the other


on friday, i had an early morning nephrology appointment. this was only my second time seeing my new kidney doctor and i'm still getting used to working with her. and that is exactly what i think a patient and doctor relationship should be, working together. to shed a little light, i am the only person with cystinosis she has ever met. i requested a prescription for a supplement that could potentially help slow down the hand and esophageal muscle wasting i have going on. it is an endless balancing act to push forward to try different things without doing harm in other areas of my body. i'm praying, crossing my fingers, and wishing on stars, that my levels of this amino acid are low so that i can not only acquire a prescription for this, but get my insurance to cover it. i just want to know i pushed the envelope and tried everything humanly possible in this fight against muscle wasting, because it is all happening so quickly.

sookie was such a trooper for my appointment and blood draw! thank goodness for my momma and her boundless help with everything. the good stuff? my kidney function is great. my glucose levels are within normal range so i don't have diabetes! (which has been a concern for past 9 months or so and is common in adults with cystinosis) my sodium is back on track as well, which is a huge, giant, monstrous relief. (oh yeah, i haven't written about how i had to leave my best friend's wedding in may in an ambulance. i'll finish that entry soon! ;)

we celebrated all this good stuff by exploring a new park!




i love to sit back and simply watch our girl navigate this crazy world we live in. i take careful notes of what i've done well as a mother and what i need to work harder on.

this summer has been...so full. packed to the brim with heartbreak, triumph, spinning in circles, lots of serious soul searching talks between my head and my heart and my old self and my momma self. i apologize for being cryptic, but life is a lot of chaos in the here and now. i've had to really get down to the core of it all and take root in the notion of a new day, wow am i grateful to be alive. one foot in front of the other.

"I beg you... to have patience with everything unresolved in your heart and try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don't search for the answers, which could not be given you now, because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without ever noticing it, live your way into the answer." -Rainer Maria Rilke

happy end of july to you!