The good stuff. The bad stuff. The in-between stuff.
Our son, Luca, was diagnosed with a rare genetic disorder called CTNNB1-syndrome at 2-years-old after over a year of testing. We started this blog as a way to keep friends and family informed on our journey, and connect with and encourage other parents on similar paths.
Follow along with our parenting journey below.
A Letter to a New Rare Mama
Welcome to the rare mamas club. I wish that I could wrap you in a big hug and tell you that everything is going to be okay. It may feel like your world has come crashing down right now, but I promise you that you will learn to fit into this new life…
Look How Far We've Come
One of the most difficult things for Luca has been eating. Ever since he was born, eating has been a huge struggle. From latching issues, to projectile vomit, to gagging on food, to slow weight gain… I think we’ve dealt with just about every difficulty around feeding there is.
I Want a Better World for My Son
Every few weeks we take Luca to a park near our house. It’s a relatively new park with all kinds of fancy things for kiddos to play on. Swings, crazy climbing structures, a splash pad. So many fun contraptions that weren’t even a thing when I was a kid.
So We've Landed in Holland...
When we started our journey with Luca, I went on my own personal journey of seeking out all the information I could possibly absorb. I started reading books by parents of children with special needs. I started reading blogs. Listening to podcasts. Reading articles. I craved learning…
A Seat at The Table
We got the phone call on May 18th that we hoped we weren’t going to get. It was our genetic counselor calling to give us the results of Luca’s whole exome sequencing test that discovered an abnormality in one of his genes.
Letter to My Son on His 2nd Birthday
Today you’re turning TWO YEARS OLD. I can hardly believe that you’ve been a part of our lives for 730 days. 730 days that my heart has lived outside my body. I remember dreaming about…
A Little Luca Health Update
There’s been quite a bit going on over here in Luca land, so I wanted to give an update on how he’s doing and where we’re at in our journey.
Story Behind the Name
When Corey and I found out we were pregnant with Luca, I immediately started planning everything. I was planning the nursery. The outfits. The first birthday party…
An Unknown Journey
I still remember the day very vividly. I was at Luca’s 4-month check-up and our pediatrician asked me if I noticed Luca’s arms and legs ever feeling really stiff up until then. I thought back over the past 4 months. “I’m not really sure,” I said back to her feeling like the worst mom ever for not knowing exactly what she meant…
Why a Blog?
I’ve had a desire burning in my heart for a while now to write and process what we’re going through with words. The past 2 years have been incredibly difficult. Luca’s been through a lot…