Hope.
Let that sink in for a second. How much hope does this statement give you? For me it is overwhelming! I can’t imagine that there are many people that read this blog whose life has not been touched by someone who SUFFERS from one of these disorders. Researchers refer to Rett Syndrome as a “Pandora’s […]
Best Shoes EVER
Have you ever had a pair of shoes that made you cry? ME either……until this week. When Brooklyn received THESE amazing personalized JUST FOR HER converse shoes in the mail! As you can tell by the look on her face she LOVES LOVES LOVES them! (all of her friends thought they were pretty FABULOUS too!) […]
8 years ago
I wonder if our diagnosis day was not so close to her birthday if I would still remember it each year? Early on….sure, of course – 1st year, second year, 5th year maybe. But now eight years later – should it still come to mind? Should my heart still hurt? And eight years…how can that […]
Ragnar 4 Rett
This weekend six AMAZING women will we running 182 miles for 182 girls with Rett Syndrome in the #SoCalRagnar relay race. They run because our girls can’t and because our hope is that one day they WILL! Brooklyn is mile 177 and her runner is Kristen, we will be cheering her on from here and hope […]
Team Brooklyn – Disney Princess 1/2 Marathon
I am taking 2015 off from running the Disney Princess 1/2 Marathon. I will be there to CHEER on all of the runners and will be helping out with all of the GP2C events and hanging out with my Rett Syndrome family – just no running this year. Of course that does not mean that […]
Farewell 2014….
I will start this post with an apology…..what a blog slacker…..I thought it might be a good idea to do an end of the year post to touch on some of the highlights (and not so “high”lights of the year. <this is a LONG post – you have been warned!> January – We began the […]
Life.
Last month was Awareness month and when I think about Down Syndrome and Rett Syndrome facts, awareness, and acceptance I could go on and on with stats, stories, symptoms, etc. OR I can post one picture. Denise shared this picture with me yesterday saying it was one of her favorites from the photo shoot. It […]
Rockin’ for Rett
This year’s Rockin For Rett was AMAZING!!! I still can’t believe that this was our SIXTH year. Where has the time gone? I am still SO thankful that Libby came to me wanting to host an event, wanting to do SOMETHING to help. Over the past six years this event has raised over $40,000. This […]
Rockin’ For Rett
I can’t believe that this is our SIXTH year for Rockin’ For Rett! We are so pumped – each year gets bigger and better! I cant thank Joe & Libby and the entire Piggy’s crew enough. Mike Conley is joining us again this year – he of course is always a crowd favorite! The Brent […]
7 years
Seven years ago today I shared these words on my blog: MONDAY, MAY 21, 2007 Diagnosis Day We got “the call” tonight. Brooklyn’s blood tests were back and she has been officially diagnosed with Rett Syndrome. We have assumed this to be true for a few weeks now but it was still hard to hear […]
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