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…
Browsing Category Awareness & Advocacy
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…
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…
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…
The Importance of Words – Replacing Normal with Typical
Words are a funny thing. They can be powerful, hurtful, funny, telling, or emotional. We use them to communicate. To tell stories or pass along information, thoughts, or feelings. Sayings such as “the pen is…
The Emotions of AMC Awareness Day
Jenna likes to make fun of me sometimes, saying I’m the long-winded one with posts, it’s partially why I created this blog. I tend the write more than a Facebook or Instagram post will allow….
AMC Awareness Day
Today is AMC Awareness Day. It’s a curious thing, having a child with a condition that has a day that is dedicated to its awareness. What’s even more curious, is your child having a condition that…
The Ability Walk
See the Ability, Not the Disability Our local hospital, Rockcastle Regional, held a new event today. One I’m hoping can grow and become a yearly event; The Ability Walk. We had a great (but very…
Our New Holiday – June 30th
I had no idea 15 weeks ago. I did not know what AMC was, or that it had an awareness day. Today we received our package of all our AMC Awareness goodies. T-shirts, wrist bands,…
World Clubfoot Day
Today is World Clubfoot Day which takes place on the birthday of Dr. Ignacio Ponseti, pioneer of the Ponseti method for clubfoot. As previously documented, HG began the Ponseti method when he was 2 weeks…
Marvel Features Young Martial Artist with Arthrogryposis in Hero Project
As a dad raising a child with arthrogryposis, stories like Izzy’s remind me of the power of visibility, and what representation can do for kids like my son. Last year, Disney+ and Marvel teamed up…