Celebrating Cerebral Palsy Awareness Month

When Jonny and I first got married and started imagining what our future family would be like, we talked a lot about sharing our own childhood memories with our kids. We wanted to go on lots of adventurous trips, spending time outside and being active as a family. 

Then when Jaxlee was born, I wasn’t sure if that future would ever come. 

The Diagnosis That Left Me Wondering

Almost 10 years ago, I sat in th NICU room looking at my little baby hooked up to all sorts of machines, IVs, covered in wires, and unable to eat. I vividly remember sitting there thinking about the future that Jonny and I were so excited to start with our family. All those adventures, the activities our kids would participate in, and making memories together. 

If you’ve been a new mama, you know that babies eat, sleep, and poop. And if they can’t do any one of those three things, something’s off. In that moment, Jaxlee didn’t have her Cerebral Palsy diagnosis yet. Her diagnosis was “failure to thrive.”

Jaxlee wasn’t eating, so she was seen as unable to do the basic needs and “failure to thrive” was the worst words a new mom could hear. I sat there thinking my life was over. I imagined I’d be stuck at home with a child who couldn’t go many places or participate in what we had imagined for our family life. I was picturing a home-bound life with my baby girl who couldn’t eat and wouldn’t be able to live a full life. 

10 Years Later: Defying the Odds

Fast forward to now, 10 years later, and we spent the last weekend skiing as a family in Mammoth. It brings me to tears to think about our family doing something that I grew up doing with my own family and Jaxlee fully participating. 

We’ve been able to find so many opportunities for Jax— adaptive sports, horseback riding, miracle league baseball team … everything we used to dream about has come true as we have three thriving children. 

Sure, it looks different and we’re still navigating every day of life raising a child with a disability. But in the same breath, our life is so much more full because of the differences that come with Jaxlee. We see life differently because of her.

A New Perspective

March is Cerebral Palsy awareness month and Jaxlee has given us so many reasons to celebrate! This past weekend’s ski trip was extra special for us to have Jax on the mountain, and we would never take a weekend in the snow for granted in the way we might’ve if we didn’t have Jaxlee to remind us how magical these otherwise simple moments of life are. 

When Jax was first born with CP, we didn’t know if she would walk, talk, or eat. There were so many unknowns about what her life would look like. The dreams we had for our family and our future as parents felt like it was over. But in reality, what we have lived is such a sweet, tender, and full life all because we get a front row seat to Jaxlee’s life. 

Our life is so rich watching Jaxlee never give up and ensuring that we never limit her. There have been so many sweet opportunities within the disabilities community and as I get a front row seat to her life, it’s my mission to share our story and bring light for others on a similar journey. 

Bringing Light to Disabilities

This month, we’re celebrating Jaxlee’s life and all those who live with CP. Jaxlee has completely changed the way we look at life. The ability to run, exercise, play, speak, relate to others— our life is so enhanced by our experiences with her. 

It’s so important to me that you know two things: 

1. People with disabilities change lives. They are so valuable as people, regardless of what they are capable or incapable of doing. We get a front row seat to the lessons having someone with CP (or any disability) in your life can teach you. 
2. If you (or your child) have CP: you are limitless. You can defy the “failure to thrive” diagnosis and live an active life full of adventure and family dreams. 

This weekend reminded me of how true that is. Jaxlee is a true warrior, and I am so honored to have this front row seat and be able to share it with you!

Xoxo,

Emily