Rett Syndrome

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 […]

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 […]

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 […]

#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 […]

Awareness Post: Going to the dentist sucks

Awareness Post: Going to the dentist sucks

I get it NO ONE likes going to the dentist (sorry for any dentist friends I have!) But seriously, does anyone? I hate it. But you know what is worse than going to the dentist myself? Taking MY KIDS to the dentist. I honestly think that taking my poor kiddo (who has Down Syndrome, Autism, and […]

Andrew

Andrew

Rett Syndrome is sort of known as a “girl thing.” RSRT published a great blog post talking about “Why Girls?” I encourage you to check out that post by clicking HERE. While it is true Rett Syndrome MAINLY affects girls there are some pretty spectacular fellas out there  fighting their own fight right along side […]

The Struggle

I KNEW when I said I would post EVERY day in October that I would most likely FAIL. I set myself up for failure really. So I apologize and today instead of an awareness post full of facts about Rett Syndrome or Down Syndrome I post this picture. It was taken almost a year ago. […]