To Know Joy

A day after my daughter was born I was told that her prognosis was “bad.” I had yet to even hold her, and here I was being told my only child wasn’t likely to make it. To say I was devastated would be an injustice to my experience. I was gutted. I didn’t know if I even wanted to hold my first born because what will I do when she dies? How would I recover from this?

My sister, a mother of three, encouraged me to “mom up” and pushed me to accept the situation as it was. I am glad I listened, as the sense of calm that came over me as I held this child I wanted more than anything was a healing salve like no other.

As I held her and talked through all of the reasons she should fight to live, one concern kept creeping into my mind. My daughter, who had a stroke and was experiencing constant seizures, had only known pain.

What if she never knew joy?

The worst thing I can imagine for my own daughter is to not know joy. I begged her to live so she could experience joy. I vowed that if she made it, I would make it my number one priority to help her experience joy.

I’ve since talked to other special needs parents and most have had that one thing they vowed for their child while they negotiated with death. One mother, with three other kids at home, decided that her special needs daughter deserved to know and feel love just like her typical children. For me, my daughter would know joy.

My daughter made it through those anxiety-ridden months and just turned three years old. She and I have weathered the storm, and I wish I could say she is one of those miracle children who are unscathed by their traumatic entry into the world. She and I are lucky, but there are plenty of medical complexities due to her stroke.

But one thing I know for sure is that my daughter knows joy. It took her nine months to finally smile and 11 months to laugh (and we have yet to repeat a hearty laugh), but she knows joy. In fact, she is considered a joy to be around. She is very social and loves to be in a crowd, she is quick to smile when people talk to her, and she has shown a particular joy when her papa sings to her.

I’ve been told she is likely to die by three different doctors and at three different points in time. I don’t get to assume we have a tomorrow but I always hope so. Either way, my daughter, my heart and reason for being, knows joy. What more could a mother ask for?

Jackie Deuling is a professor of organizational psychology. She does research on work and family balance and understanding inclusion and diversity in the workplace. She also uses her research skills to seek new treatment options for her daughter with spastic quadriplegia cerebral palsy and cortical visual impairment. She lives in Wisconsin with her daughter, her significant other, and two highly entertaining cats, Bubba and Rufus.