27 January 2011

This Year

This year.
This magical year.
This challenging year.
This year I met the most fantastic human being I've ever had the honor of meeting.
This year I grew more tangled into the one I created her with.
This year I dug deeper and thought about things I never have before.
This year I questioned my decisions, our decisions, and the impact they would have on her life.
This year I became a different woman.
This year I found new pieces of myself.

There are multiple times a day when I stop and think, she knows so much more about life than I do. No, she isn't walking yet, but she has it all figured out. She smiles at me with the beams of someone who knows all the secrets of the universe.

My wish for her birthday? A fundraiser for the Cystinosis Research Network and big hope that I will be around to watch her grow up. CRN has been working diligently to improve the lives of those who live with Cystinosis. They have made tremendous strides in the last 15 years so that I can live bigger and better, and so can other members of my sweet Cystinosis family. My mother was a founding board member, and now I serve on the Board of Directors myself. My goal is $1,000; which is a lot to us because we do not receive any government funding for research. Because of that, the families and friends in our community must raise every single penny ourselves if we want improved medications that don't include one that destroys our GI systems and must be taken every 6 hours, or eye drops that are reccomended to be put in every hour to prevent blindness. I'm asking for a donation of $5, the price of a coffee from Starbucks. It truly doesn't take much to make a measurable difference. You can donate and read more HERE. If you feel so inspired, please share this on facebook, twitter, your blogs. I would love to see this reach people out there who have never even heard of Cystinosis. (Which is most of the population, but still.)

Thank you. 


  1. This photo is AMAZING!! definitely frame worthy of :)


  2. I have been following you for awhile now and JUST NOW have gotten to browse your blog. I L*O*V*E it!!!!!!!!!!!!!!!

    And...the photo is amazing! I will be back to visit some more. Keep hugging your baby...they grow up sooo fast! :)

  3. I am new to following your blog!
    Check out mine if you'd like! I hope you like it as much as I like yours!


  4. That picture is wonderful! What a unique way to capture your relationship! Those tiny toes are just precious! :)

    new follower

  5. Hi
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    i hope you will stop by