Team Brooklyn

17 Girls

17 Girls

When my sweet girl came into my life eleven years ago. I had no idea what Rett Syndrome was – I had no idea that two years later I would watch this sweet girl lose the words she learned to speak, watch her legs stop working, and her hands refuse to allow her to feed […]

Waiting….

Waiting can be tough whether you are simply waiting on your coffee to brew, waiting on news about a new job, or waiting to for the mailman to deliver that certain package. For me today the waiting was in a form of a call from the school. You see Brooklyn has started having a ton […]

9 Years

9 Years

How is it possible that is has been nine years since I received that life changing call? The one where the voice on the other end apologizes. I suppose she apologized because the test for Rett Syndrome was positive, or she apologized because five weeks earlier we sat in their office and heard “we are testing […]

#thebigrettshare

#thebigrettshare

This is a quote from another Rett mamma, Elizabeth – it is a part of the Army Of Us Rett Syndrome Awareness Campaign. All month long they are sharing amazing facts, links, photos, and of course amazing quotes. This one sort of sucker punched me. It is something that as a mom I think about […]

Hope.

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 […]

#NoMoreEmptyArms

I remember sitting at my dining room table hearing the news that sweet Livvy had passed unexpectedly in her sleep. She was the first little girl that had died since we had received our diagnosis. I never had the chance to meet Livvy and still have not had the opportunity to meet her amazing mamma, […]

Inclusion ROCKS: Friends ROCK!

Inclusion ROCKS: Friends ROCK!

I can’t believe that Brooklyn has been in school three weeks and I have not done a single blog post about 5th grade yet. SHE IS LOVING IT!!! So far my favorite story was last week. When I picked her up her afternoon 1:1 aide shared a story with me. She said that two of […]

Best Shoes EVER

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!) […]

Fifth Grade - Presentation to Brooklyn's Class

Fifth Grade – Presentation to Brooklyn’s Class

Today I went in to Brooklyn’s fifth grade class to do a brief presentation on Rett Syndrome and how to communicate with Brooklyn. I try to do this each year at the beginning of the year so that her classmates and new teacher have a better understanding of Brooklyn. This year there were only three […]

2007 yar of diagnosis

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 […]