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 […]

Minor Surgery

Minor Surgery

Today Boston had dental surgery – it was nothing major, it was outpatient, no big deal. Those words are easy to type now that it is over and we are home ;) because leading up to it and during it felt pretty MAJOR! To be honest I did not sleep great last night. The fear […]

#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. […]