About Our CPARF Ambassadors: Meet Jenny

Fri 23 Apr 2021

We're thrilled to introduce Jenny Saunders as our newest CPARF Ambassador, and we asked her to tell us — and you — more about herself. You can also find her on Instagram.

Hi there, my name is Jenny, but these days I more often than not go by “Conner’s mom.” Before Caden and Conner, telling you about myself would have been pretty easy. I knew who I was, knew what I liked, had actual hobbies, friends, a career, got enough sleep, found time to work out and do things for myself…basically, I felt human and had control of my own life. However, before kids I would have told you I prefer dogs over humans (still true), staying in over going out (also still true), I was unsure of myself, an over-planner, non-confrontational, stayed in my comfort zone…you get the point. I think losing who you are is common for women once they become mothers, but I’d be willing to bet it is more so for mothers of children with disabilities.

Caden and Conner were born at 24 weeks and considered micro preemies (both weighing well under 2lbs). We lost Caden at one day old and Conner fought for his life in the Neonatal Intensive Care Unit for 196 days. He defies the odds every single day. The first two years of Conner’s life were full of one diagnosis or surgery after another. Conner has Periventricular Leukomalacia (PVL), Cerebral Palsy (CP), Epilepsy, missing Corpus Callosum, and a g-tube just to name a few. Conner’s list of diagnoses is daunting, but please don’t judge him based on that. He is a funny, playful, smart five year old boy that loves guitars, music, animals (especially his dog, Fenway), Old McDonald and funny bodily sounds (yes, you know what sounds I am talking about)!

Overnight, my life instantly flooded with a complex medical reality. Something I was never prepared for, never expected, and frankly never wanted. Being thrown into motherhood 16 weeks early, learning to grieve the loss of one child while trying to stay strong to help another child fight for his life was one of the hardest and darkest times in my life. I made the difficult decision to quit my job in order to be with Conner in the NICU and thus be his full-time caretaker and mom when he came home. I truly didn’t know what the future held and while back then I wished daily that I could know what the next five years looked like, today, I am glad I did not know.

Many women quit their jobs to stay home with their children. Quitting my job was something I was still up in the air about during my pregnancy. I enjoyed working, loved the challenge, and craved the opportunity to be creative. I made my own money and was able to focus on tasks and complete projects. It wasn’t until years after I quit, did I realize what having a job truly gave me nor how much it defined me as a person.

While becoming a caretaker means that I literally do not ever complete tasks in a timely manner, it has unexpectedly taught me so much more about life and myself than I could have gained from any job. Now, I can tell you that I am resilient, I have learned to fight for things I believe in and advocate on behalf of Conner or myself, openly share our journey when it feels right, make connections with others, educate…the list goes on. While sometimes I find it easiest to stay in my comfort zone, I quickly remind myself of the difficult tasks I have done over the last five years and I see how much I’ve changed. I am capable even if it doesn’t feel like it in the moment.

This life comes with many challenges. One that I feel daily is a lack of balance between being a mom, therapist, personal assistant, caretaker, teacher, researcher and my own person. I find myself teetering between therapist, assistant, caretaker and mom. More recently, I have learned to accept that I can’t do all of these roles and do them well and thus need to rely on others when I can in order to be able to fill the mom role to Conner. The mom role is my favorite and the one that brings me the most joy, but often the hardest one to make the space and energy for.

I am still on a journey to find who I am today, what I like, how to manage my time so that I can find non-mom hobbies and activities that bring me joy. In the meantime, thanks to becoming a mom, I feel incredibly equipped to accomplish anything I set my mind to.

Thu 11 Apr 2024

In the first part of our newest Science Spotlight blog, learn how scientists can harness electricity to help with movement disorders that sometimes accompany cerebral palsy.

Thu 04 Apr 2024

Check out the final part of Rindi and Soren’s story.