When I was young, I imagined a career as a lawyer and a family with high-achieving children who would one day build successful careers of their own. I structured my life around these goals. I went to law school, got married, and as I started a family, my job defined my life.
For a while, everything seemed to be going according to plan. My career as a civil rights lawyer, which I loved, was thriving, and I got pregnant on schedule. Almost as soon as I saw the two pink lines, I immediately started planning my child’s future. I made a mental list of activities she needed to be well-rounded, and hilariously, I even considered how the right preschool could ultimately propel her into one of the best colleges in the country. I planned to return to work full time a few months after having my baby and figured that would go as planned as well.
However, when my daughter was unexpectedly born with complex medical needs and disabilities, my priorities suddenly changed.
The author’s daughter was born with complex medical needs and disabilities. Courtesy of Jamie Davis Smith
My daughter’s disability forced me to rethink how I approach life
I thought my first days as a new mom would be spent happily documenting feedings, documenting milestones, and happily making plans for the future of my little family. Yet instead of worrying about when my daughter will crawl, walk, and talk, I wonder if she will live or die. It brought her and my lives into focus.
At first, I remained hopeful that our plans were only briefly derailed and that my vision for our family’s future could still be realized. But when my daughter finally came home from the NICU, wearing an oxygen tank and a monitor beeping, I realized I needed to let go of the pressure and expectations that a successful life meant wealth, a career, and good schools.
The author now has four children and thinks differently about their future. Courtesy of Jamie Davis Smith
tilting outward is necessary
Changing my lifestyle wasn’t an option at first. For a severely disabled child who requires round-the-clock care, working outside the home is out of the question. I mourn the loss of my life: a job I loved that allowed me to help others, an active social life with my dear friends, and frequent travel.
Over time, her disability and medical needs became more severe than I initially realized. It was obvious that she would never speak or perform basic tasks, such as feeding herself. She needs a wheelchair to get around and requires frequent doctor visits and treatments to stay healthy. I also mourned the life I imagined for my daughter, one that included playgrounds, dance classes, and eventually independence.
However, I slowly began to focus more on happiness and living in the moment rather than keeping up with my law school classmates and their growing children. My definition of success shifted from a big house and a nice car to truly enjoying myself and living life to the fullest every day. I also changed what success meant to my children. Instead of worrying about whether my child would get into Harvard, I celebrated my daughter taking her first steps at age seven and learning to use an assistive communication device to make basic requests, like asking for a glass of water.
I now have three other children who are developing normally. While it would have been easy for me to revert to my old parenting mindset and force them into high-paying careers, I now emphasize the importance of happiness and making time for the people and activities that bring them joy every day.
I now know clearly that life can change in an instant and tomorrow is not promised to anyone.
Now, she’s more focused on thriving than surviving. Courtesy of Jamie Davis Smith
Now I focus on thriving instead of surviving
I realized that there were many days before my daughter was born that were about survival. I’m focused on achieving the next goal, the next milestone. In planning for a better future, I almost forgot how to focus on the here and now. My daughter shows me how necessary and important it is to find happiness every day.
Even though I quit my full-time job out of necessity, it was the right choice for a number of reasons. I now have flexible work as a part-time professor and freelance writer. Although I don’t have the same prestige or salary as I once had, I have more flexibility to spend time with my daughter and her three younger siblings. While the kids are at school, I can go for walks with friends and find time to de-stress with a book and a hot cup of tea when needed.
This is not the type of life I imagined, but I am grateful every day that my daughter teaches me why surviving and thriving is so important.