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 […]

Awareness Month!

Awareness Month!

Throughout the month I will be sharing lots of information about Rett Syndrome but if you have a specific question please ask! Simply leave your question in the comments and I will be happy to answer! Lets start with what is Rett Syndrome? (visit www.rsrt.org for more info) Imagine the symptoms of Autism, Cerebral Palsy, […]

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 […]

Birthday Boy

Birthday Boy

Happy Happy Birthday to my sweet little guy, Boston. I still can’t fathom that he is SEVEN today. It just can’t be! We won’t be doing much of a party really – he doesn’t care for all of the commotion. But I absolutely CELEBRATE this little life. It is funny, I remember being pregnant with him […]

My Argumentative Kid

My Argumentative Kid

Yesterday Boston was hanging out with my friend Holly (who provides respite hours through the waiver) she is AWESOME with Boston.  First off –  I get this adorable picture from her simply titled “stud muffin” I agree, he is! Its funny because NO WAY would he keep sun glasses on for ANY length of time […]

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 […]

"Mommy, I want a drink"

“Mommy, I want a drink”

“Mommy, I want a drink” “Mommy, I want a drink” “MOMMY I WANT A DRINK” “Mommy I WANT A DRINK NOW!!!!” I know that MANY of my mommy friends can relate to this very scenario, right? You might be thinking but wait, Boston is NON VERBAL…what the heck is Kelly talking about? No way Boston […]

Panic Attack

Panic Attack

Some say “when panic attacks occur, you feel like you’re losing control, having a heart attack or even dying or that it is a sudden intense surge, or an attack of anxiety characterized by feelings of impending doom and trembling, sweating, pounding heart, and other physical symptoms.” check, check, and check. If someone had asked me if I […]

2016

2016

Brooklyn, My first little love. I pray that 2016 is a healthy year for you without surgeries, seizures, broken bones or hospital stays. I hope that it is a year of scientific breakthroughs for Rett Syndrome that will bring us a cure or at least treatments that might help some of the the more devastating […]

Stupid Rett Syndrome

Stupid Rett Syndrome

First, I need to apologize – I have been a blog slacker for sure! I think the holidays are typically a tough time for me and either I don’t feel like putting my feelings out there or can’t find the time to do so. However, I know you all love and support us through this […]