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this post was written friday july second in anticipation of vacation time


Look. I'm not trying to be dramatic. I'm not composing the most artful way to tug at your heartstrings. This is just how it is.

Tonight my daughter cried at me after I'd put her to bed. I came to see what was wrong. Her legs hurt from the muscles cramping in her legs as the tendons shorten and make it harder and harder for her to stand. She had gas that was hurting her belly and she desperately wanted me put her binkie back in for a small measure of comfort. She wanted me to hold her and help her fall asleep.

I hate Rett Syndrome right now and I honestly just want to forget about it for a while. The only reason why I'm writing this is because $500,000 is on the line again, and I'll be damned if I don't do everything I can to get that money into the hands of researchers.

Even if it's too late for my baby.

Please vote. Be obnoxious. Get people to notice.

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Comments

  1. carlaJuly 6, 2010 at 6:28 AM

    xo xo

    #thatisall

    ReplyDelete
  2. A SISTER IN CHRISTJuly 6, 2010 at 8:18 AM

    Bless her heart...and God bless you for your tireless campaigning! Of course, that is what a Mama does. doesn't she?? Prayers that the money will be awarded to this cause. ((hugs))

    ReplyDelete
  3. BrookeJuly 6, 2010 at 10:30 AM

    Those Binkys are life savers in very stressful little peoples lives, so self calming. Hang on girls keep boyed up we are voting on our end like mad. Wish all my facebook friends would do it too.

    ReplyDelete
  4. AnonymousJuly 6, 2010 at 3:04 PM

    What you're doing is exactly what you should be doing! I just wish I could do more to help.

    XOXO

    ReplyDelete
  5. TamiJuly 6, 2010 at 3:26 PM

    I will vote!

    ReplyDelete
  6. RiverJuly 6, 2010 at 5:54 PM

    I'll vote till I drop :)

    -hugs-

    ReplyDelete
  7. Leanne @ Deep Fried FruitJuly 6, 2010 at 6:23 PM

    Keep doing what you're doing JBS! You are doing so much already and I am right here with you. Every day I go in and vote and get frustrated right alongside you as we remain at 3rd place. Keep voting people!
    And keep hugging that beautiful girl.
    Cyber cuddles from Aus.
    L

    ReplyDelete
  8. hcgwillpower.blotspot.comJuly 6, 2010 at 10:17 PM

    I am terrible about commenting mostly because I am so techno lacking. I wanta go to the beach soooo bad it's been like forever since I have seen that ocean kind of view. Have fun soak up the sun and oooh enjoy let her feel the sand and maybe the water if she likes it. You deserve to have a fun day. My day so far has been great.

    ReplyDelete

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journey . beyond . survival at gmail . com
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