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)













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.

27 comments :

  1. Thank you for your incredibly sweet comment on my blog! Your attitude is also inspiring and I can't wait to read more of your blog.
    Oh and I completely relate with this post. Sometimes, the fear does take over. But you are right, grace and strength have to win. They just have to!
    Thanks for writing on your real feelings about your health and making no apologies for that. :)

    Dana

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  2. Your strength is so encouraging. I pray that I have that kind of grace and strength when faced with hardships....stopping by from the followers fest, already a follower :)

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  3. Found you through the blog hop, what a beautiful little girl.

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  4. Just saying Hi from Style Outside the Box! We would love to do a link swap with you! :) New Follower from Oct Fest! :) Come say HI at http://www.styleoutsidethebox.blogspot.com/

    :)

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  5. hope may waver but it will never leave you. Just slow down and soak in life.

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  6. your little girl is so cute (:

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  7. Thank you for sharing your story. I am encouraged by your strength! I am also your newest follower from the Fest :)
    Courtney
    www.lilnoodlebug.com

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  8. I think it's important to share your story! But it must be so hard! I will be praying for you. Your blog is so cute!

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  9. You are amazing. Your strength is so unbelievable! You little girl is lucky to have you as her mama!

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  10. As easy as it may seem to just day "enjoy the ride" it's not. You came to life with a purpose. I am sure you have found it. And you are not only touching your life but also your own because the strength you learn from trials is what makes a person REAL!

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  11. Your little one is so adorable.

    You are amazing! Thank you so much for sharing your story.

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  12. wow, this is an inspiring post and you are so so strong to write about all of this. i can not wait to read more, i read your story and about your diagnosis. you are brave and i am praying for you. :-) your little girl is absolutely adorable. i am over from the follow fest and am a thrilled to be following you now.

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  13. Hi! I'm stopping by from Kelly's Korner. Nice blog. I enjoyed looking around.

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  14. Wow, thank you for sharing your life, your story. Definitely pulled on my heart strings and am so happy to be a new follower of your blog through FF. Hope you can stop by for a visit here http://www.nataliensor.blogspot.com/

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  15. Tahnie, you are the most amazing person EVER!! I love, admire, and completely look up to you in every way. You are so sweet and incredible and TRULY inspirational in every sense of the word! I am so happy you commented on my blog and we can start to develop a wonderful friendship. I just love love love you and your blog!! I hope you are having a wonderful day :)

    Megan

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  16. Your family is absolutely beautiful!!!! I a glad I found your blog!!! I am a new follower from the followers fest!!! Follow me back at onesweetstory.blogspot.com!!! Happy Halloween!!!

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  17. Very inspiring! I'm hopping over from Casey's blog, new follower~ Hope you have a great weekend!

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  18. What a beautiful and powerful post, so glad I found this blog :).

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  19. loving this post! and that picture is tooo cute!



    http://infinitelifefitness.com
    http://mscomposure.blogspot.com

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  20. that's a great song and i often take those words to heart. keep fighting strong girl. im a new follower from follow fest. looking forward to witness your journey.

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  21. And the reason that they have to is because the alternative is going mad and giving up, and who wants to do THAT!? :/

    I think I need to go and listen to this song now. :)

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  22. Not going to deny that this scares me a little bit, but it's hard to even believe the strength and courage of both you and Ror. And Sookie, of course.

    Love you so much, please keep being honest and keeping us updated. You are amazing. <3

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  23. can I just say that your blog is incredible? I'm a new follower.

    -Stacie
    www.readjame.com

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  24. Wow what an amazing story! I love your blog, and your little girl is too precious for words! I cant imagine living with what your living with..your such an inspiration to all of us, to live life to the fullest and treasure every little moment! Im glad I found your blog through Casey Wiegand's follow fest! Great to meet you!
    -Mindee

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  25. The love that Rory has for you is just amazing! And the trust you have for him is even more amazing! I am in awe of your strength (even when you feel you are weak, you have more strength than some of us will ever feel!) and I appreciate you sharing your story. I have no doubt that you will change lives!
    xoxoxo to your sweet family! And your daughter... again... adorrrable! Like, melt my heart adorable :)

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