CARE & GIVING: Cortney’s Story — Part Three

CARE & GIVING: Cortney’s Story*

In the next part of our Q&A with Cortney, she explores some of the challenges she faces.

What do you find most challenging to deal with as the mom of a child with cerebral palsy?

I would say my greatest challenge are the feelings of guilt and loneliness I have as a full-time working mother of a child with cerebral palsy. I recently attended a cerebral palsy conference that was focused on families of children with CP. It was a wonderful conference, and I made many great connections with providers and other families and caregivers. However, one thing really stood out to me — I did not meet a single other mother who worked full time.

The conference included a parent panel, and although they gave helpful perspective and insights, I was frustrated because they were all mothers and full-time caregivers. What about the fathers of children with CP? What about the mothers who work full- or part-time? In other aspects of my life, such as work and my friend group, I have a lot of friends who are parents and work full time, but I did not have any friends who had a child with a disability until my children started attending their current school.

Although the feelings of guilt and loneliness nag, they have gotten better over time. We are all doing the best we can with the circumstances we are given, and every family is different. In our family, my husband and I work full-time, and I work for an organization that has very good health insurance. Because of my insurance, we are able to provide Scarlett everything she needs. We have never had to say ‘no’ to any referrals, equipment, treatments, or procedures.

I am also fortunate to work with an incredibly supportive manager and team who encourage me to put Scarlett and my family first. I know how blessed we are, but I often can’t help but wonder if I could still do more for Scarlett if I did not work full time. Often, I recognize that my feelings of guilt tend to stem from my sense of being alone in my circumstances, which is why I have tried to participate and engage more with the CP community. For example, for a couple of years I have participated in STEPtember with Cerebral Palsy Alliance Research Foundation, which has helped me connect with adults who have cerebral palsy and other parents. Also, I hope that this blog may even generate some future connections. Any parents out there who feel similar? Let’s connect!

Moved by this story? Donate to CPARF to keep cerebral palsy research and disability innovation moving forward.

*Cortney's story is part of CARE & GIVING. This series covers a few different aspects of the cerebral palsy community. It features the experiences of those who care about and for people with cerebral palsy, including parents and caregivers, therapists, paraprofessionals, and other allies. It also highlights donors who have made it their mission to move cerebral palsy forward, because care and giving go hand in hand.

The CARE & GIVING blog is intended solely to raise awareness about the varied human experience with cerebral palsy and shouldn't be read or construed to contain any medical advice or medical endorsement by Cerebral Palsy Alliance Research Foundation. Only you and your doctor know what's best for you. Please consult your doctor for medical advice.