Rett Syndrome

A Christmas Gift Guide for That Special Girl With Rett Syndrome

We’re just two weeks away from the big day. How did it creep up on us so fast again, right? But you know what? I’m ready for it this...

29 Days of Purple... and I'm Exhausted!

Today is Rett Syndrome Awareness Day, but I'm exhausted. For me... EVERY day is Rett Syndrome Awareness Day. And it never gets easier.

Today Was IEP Day

What are your greatest strengths? How about your weaknesses? Often we only think of these questions when we’re preparing for an...

2021 Twenty: Figure Out Kindergarten Transition for My Twins

It is devastating for me to realize that in June five years will have passed since my twins were born. As I mentioned in previous blogs,...

2021 Twenty: Learn 100 Words of Sign Language

Every Tuesday is speech language therapy day around here. If you've been following my families journey, you should know that Ethan has...

Magnolia’s Hope

Last night Lisa and I watched "Magnolia's Hope", an intimate documentary about a little girl with Rett Syndrome much like Madison. A lot...

2020 Twenty: Become an Advocate

I've seen this day approaching now for a couple of months. Today, January 15th is our D-Day for Madison. D-Day is the diagnosis day for...

How Did I Know?

For the first year of her life, Madison progressed normally, albeit slightly slower than her younger twin brother Ethan. But we thought...

Was Madison BORN With Rett Syndrome?

Madison was born on June 1, 2016 (five weeks early) and was first known as “Twin A”. Two minutes later, her twin brother was born. Both...

Rett Syndrome Awareness Month

October is Rett Syndrome Awareness month so in support of that, Madison will be taking over my social media accounts and blog for the...