just a ride

"Oh, my friend, 

it's not what an illness takes from you that counts 

- it's what you do with what you have left." 

(adapted from a quote by Hubert Humphrey)

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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.

grace and strength always win.
they have to.