i want

I want to fix everything for everyone with the snap of my fingers. I get sad, angry, and frustrated when it simply can't be done.










Important things are brewing in circles I'm very involved in and I am the blunt one, speaking truth even if it isn't the popular avenue. I believe you can have hope and see reality at the same time though. I'm a brutally honest woman and I am damn proud of that.












I want to give as much as I get. 
No, I want to give more than what I get.
I want to live loudly.
I want to fight for better treatments of Cystinosis, because what we have now? Is ridiculous and hasn't changed since 1977. We are losing lives faster than research can save them and I will never accept that.
I want my daughter to live her days through the filter of magic, albeit not to the point she is deluded or out of touch.
I want to create a movement; of living in the now, eating it up, soaking it in, and never ever thinking we are entitled to anything past our current breath. 
I want everyone to know that my daughter conquers the impossible every single day simply by existing and I had to make peace with the fact i might not survive my pregnancy with her.
And I don't want to be shy about it; because it is my story and no one should ever feel hesitant about sharing their life, their truth, their legacy.
I want to inspire, to help people choose happiness...because it is right here.










Oh, and a faux fur hat like this one Sookie tried on the other day; I want one of those for this enchanting winter I am lucky enough to be here during, loving on our girl, the whole way through.


Impromptu dance party on my parents' patio this evening with my mom, dad, and my girl and my guy; the happiness so potent it triumphs over the big bad scary stuff in my heart. ♥




10 comments :

  1. wow you go girl! and i love your new header! you ARE already an inspiration!

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  2. I love how honest you are and how you dont feel like you need to hide the truth and you live your life positively but realistically. I have a question though because I have followed your blog for a while and read back when I first started reading and researched into cystinosis (which i couldnt find much because like you said they need to do more for it) You hint at the fact that you may not be around for Sookie when she is older, and how you are saying you need to be a realist in this post is that a result of cystinosis? Are you sick all the time, or do you generally feel like a normal healthy person day to day but have bad days?

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  3. I love your perspective. You're always so positive despite all the things you have to be down about. I'm a new follower, but I really look forward to your posts. They are so honest and I love how you still find it possible to be positive and thankful. Always uplifting, no matter what. You are so brave in the face of everything. <3 Thanks for the inspiration to practice real gratitude and joy.

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  4. "I want everyone to know that my daughter conquers the impossible every single day simply by existing" Love that! You are such an example and inspiration. Thank you for sharing. I think we all feel the same way most of the time that we could change things just with the snap of a finger...

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  5. hi, thanks for blogging.

    i'm not sure where you are from, but i wish we were neighbors :)

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  7. Laura,

    You have no idea how much it means to me you asked that. I feel like a sugarcoat A LOT on the blog and I'm working on finding a balance between showing my heart and my life for what it is, but not complaining all the time. Cystinosis affects me every day, and sometimes it is very very very difficult and heartbreaking. I've lost several friends with Cystinosis in their 20s.

    You've inspired me to do a whole post on this. :)

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  8. Wow, Sookie really looks like you!

    I know what you mean about being part of a group trying to make an important decision and being in the position of being "the blunt one". I've been there too, and it can really suck. :S

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  9. Tahnie -

    I was afraid at first to pry, but I am glad that you are going to be writing a post about it. I know it may feel like complaining but we as followers, or at least me anyway, we are here to listen to your life and be inspired by you and what happens in your life good or bad is inspiration in different ways. If you think of the people who inspire you did they have perfect lives, no they usually had a struggle and it was how the fought that struggle that made you look up to them. I understand that life is too precious to be negative, and that is what I love about you, you are SO positive which is a wonderful thing to be for Sookie! Though I am glad that you are going to let us in a little more to what you have to live with and deal with everyday with cystinosis. I want to understand and I think you will find that it will educate us and help us help you in the fight.

    Thank you for being so inspiring!

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