When I was younger, I pictured a career as an attorney and a family with high-achieving children who would one day build successful careers of their own. I built my life around these goals. I went to law school, got married, and let my job dictate when I started a family.
For a while, everything seemed to be going according to plan. I had a thriving career as a civil rights lawyer that I loved, and I got pregnant right on schedule. Almost as soon as I saw two pink lines, I dove headlong into planning my child’s future. I made a mental list of the activities she would need to be well-rounded and, laughably, even considered how the right preschool could eventually propel her into one of the country’s best colleges. I planned to return to my full-time job a few months after giving birth and assumed that would go according to plan, too.
However, my priorities shifted abruptly when my daughter was unexpectedly born with complex medical needs and disabilities.
My daughter’s disabilities forced me to reconsider how I approached life
I thought my first days as a new mother would be spent blissfully tracking feedings, tracking milestones, and joyfully putting my plans for my little family’s future into place. However, instead of worrying about when my daughter would crawl, walk, and talk, I wondered whether she would live or die. That put her life, and mine, sharply into focus.
At first, I still hoped our plans were only briefly derailed and that the vision I had for my family’s future could still come to fruition. But when my daughter eventually came home from the neonatal intensive care unit, tethered to oxygen and monitors that beeped constantly, I realized that I needed to let go of the pressure and expectation that a successful life meant wealth, a professional career, and good schools.
Leaning out was a necessity
Changing my approach to life wasn’t a choice at first. With a significantly disabled child who needed round-the-clock nursing-level care, working outside the home was impossible. I mourned the life I had lost: a job I loved that allowed me to help people, an active social life with friends I held dear, and frequent travel.
As time passed, the extent of her disabilities and medical needs revealed themselves as even more severe than I had first realized. It became clear that she would never speak or perform basic tasks, such as feeding herself. She needed a wheelchair to get around and constant doctor’s appointments and therapies to stay healthy. I mourned the life I had imagined for my daughter, too, one that involved playgrounds, dance classes, and eventually living independently.
However, I slowly started focusing more on happiness and living in the present rather than keeping up with my law school classmates and their typically developing kids. My definition of success shifted from a big house and nice car to truly enjoying myself and living to the fullest each day. I changed what success meant for my kids, too. Instead of worrying about whether my kids 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 cup of water.
I now have three other kids who are typically developing. While I could easily have slid back into my original parenting mindset of pressuring them to have high-paying careers, I now emphasize the importance of happiness and making time for people and activities that bring them joy every day.
I now know, starkly, that life can change in an instant and tomorrow isn’t promised to anyone.
Now I focus on thriving rather than surviving
I realized that before my daughter was born, many days were about survival. I was focused on achieving the next goal, the next milestone. While planning for a better future, I had practically forgotten how to focus on the here and now. My daughter showed me how necessary and important it is to find happiness each day.
Although I left my full-time job out of necessity, it was the right call for several reasons. I now have flexible jobs as an adjunct professor and a freelance writer. While I don’t have the prestige and paycheck that I once did, I have more flexibility to spend time with my daughter and her three younger siblings. I can fit in walks with friends while the kids are at school and find time to decompress with a book and a cup of hot tea when I need to.
It’s not the type of life I imagined, but I am grateful every day that my daughter taught me why it’s so important to just survive, but thrive.
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