Finding the Fire behind the Diagnosis by Jess Casper

Finding the Fire behind the Diagnosis

by Jess Casper

With a prenatal diagnosis I thought I would be totally prepared for what was to come. Little did I know that no matter how much research I did, nothing was going to prepare me for becoming a mom to a little girl with Down syndrome. Gabriella Marie was born at 37 weeks via an emergency C-section after 17 hours of natural labor because her heart could no longer withstand the pressure of labor. 16 months later, multiple hospitalizations, 5 surgeries (1 upcoming), and 5 weekly therapies, Gabriella has taught me more about myself than I could have ever imagined.

Before Gabriella was born I was just a typical working mom. Taking her 3 older kids to school/daycare and going to work, going back to pick them up and having typical evenings at home as a family. I was in a job that wasn’t bringing joy to my life but was flexible with my schedule so it was easy to keep with the same routine. It wasn’t until Gabriella was here that I truly found what made me happy and what lit my soul on fire.

I found DSAGT at just the perfect time in my journey. Gabriella was about 2 months old and was newly home from the NICU. I signed up for our first Buddy Walk where I started to meet other moms with kids that had Down syndrome. From the Buddy Walk, I just always kept my eyes out for opportunities where we could participate. We attended the First Steps group where we met more friends and got to learn more about how our kids grow and develop. This group was a big changing point for me. I loved the feeling of being together with the other moms. I fell in love with the joy and compassion the kids and parents had for the small things in life. I loved watching how the kids learned, processed what was going on, and interacted with one another and I knew I wanted to do more.

With so much encouragement from Hanna and Krista I started a moms’ night out group that meets via Zoom (thanks COVID) twice monthly, and I think I can speak for all of the moms when I say this group has been so amazing and such a wonderful support. All moms are welcome to join as we talk about whatever is on our hearts for the week. Sometimes it is our kid’s behavior, their development, schooling, or sometimes we just talk about how much we really need a good night’s sleep! It is our safe space to just be us and have moms that know how difficult being a special needs mom can be.

Without DSAGT I would have never found this group of moms, that I now call my best friends and I would have never found the support for this fire inside of me that helps me advocate for Gabriella every single day.