non-verbal

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 […]

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 […]

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 […]

Lets share our EXTRAORDINARY kiddos with Social Media!

Lets share our EXTRAORDINARY kiddos with Social Media!

I wanted to share a cool new photo border with all of my DS/ASD friends! It is the perfect way to help share photos and AWARENESS on social media*. Many people do not realize that a child can indeed have BOTH Down Syndrome AND Autism. I figure images like this will spark conversation which will lead […]

Warning: I was MAD at Rett this morning.

Warning: I was MAD at Rett this morning.

I love that there is a month set aside for Awareness of Rett Syndrome but to be honest every single day I am very VERY aware of Rett and what it has taken away from my daughter. From the time she wakes up until the time she closes those beautiful eyes to go to sleep each […]

#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, […]

Awareness Month Can Start Now!

Awareness Month Can Start Now!

These little cards arrived JUST in time for Rett Syndrome and Down Syndrome awareness month!!! In the past I’ve carried around two individual awareness cards – one for each kiddo. I had purple cards for Brooklyn and separate blue cards for Boston. Now I have ONE card of awesome! Brookies info on one side and […]

Fall, Fun, & Friendship

Fall, Fun, & Friendship

School has been in session for over a month now an I am finally getting it together enough to start having friends over after school! I promised Brooklyn I would be better at getting friends together outside of school this year. She was PUMPED to have her friend Audrey over. When asked her opinion on […]