Welcome to June and Arthrogryposis Multiplex Congenita (AMC) Awareness Month! Arthrogryposis Multiplex Congenita (AMC) is a term used to describe a group of congenital conditions characterized by joint contractures in two or more body areas….
Microsoft Unveils Adaptive Tech Designed with the Disability Community
As we continue to explore assistive tech options for our son, I’ve been keeping an eye on innovations like this. Microsoft’s new adaptive accessories caught my attention, and they could be a game-changer for many…
Greene Does Greenville – Year 2 – The Beginning
January 14th was the last time we were in Greenville, SC for a visit to Shriners Children’s. Despite having over 3 months between visits, and loads of changes and growth, we went into this latest…
Stumbling Upon The Big Dog Show
Our latest trip to Greenville was also our first trip, where our appointment was in the afternoon. A unique situation for us. We spent some time just driving around the city we’re slowly falling more…
Moments Like These
I originally posted this on my Instagram feed. You can find the original poster below. After sitting and thinking about it, I felt it deserved a blog post here on the site as well. As…
The Slow Progress of Independence
A quick look behind the curtain… Harrison has accomplished many things in his first year. He has made countless strides through his work and therapies. One thing he has been unable to do under his…
A First-Year Guide for Arthrogryposis Parents
When our son was born with Arthrogryposis, we were blindsided. No prenatal clues, no preparation, just shock and chaos in the NICU. One year later, I want to share what I’ve learned in hopes it…
The Scars of a Year Ago
Thursday, March 4, 2021, at 1:05 PM I felt the coldest, soul-draining fear I have ever felt. Excitement and joy were replaced with panic and dread. Not exactly the words you want to use to…
Finding Normal When Things Are No Longer Typical
Today is Harrison’s birthday. That is still crazy for me to think about. Not just because time has flown by and how on Earth could my baby boy already be 1, but because we’ve gone…
To My Birthday Boy!
Happy Birthday! I can’t even begin to count the ways how weird that feels to say. You’re officially 1. How did that happen?! I realize that’s something most parents are going to say. Time flies…
A Year of Reflecting on People
So, our little boy is about to turn one. Thinking back on March of last year, I didn’t know for the longest time if we would even be sitting here where we are right now….
Rare Disease Day
Today is Rare Disease Day. Observed yearly, on the last day of February. To help raise awareness for rare diseases and to improve access to treatment and medical representation for individuals with rare diseases and…