Jennifer Johannesen

In the mid-’90s, Jennifer Johannesen embarked on a career in an emerging industry that she loved: website development. When Jennifer and her partner decided to start a family, her plan was to take a maximum of four months of maternity leave before returning to work.

But seven months into her pregnancy, Jennifer’s midwife grew concerned about the sudden buildup of fluid in her abdomen and urged her to seek care. “I walked out of the office to have an ultrasound, and I never went back,” she says.

Her son, Owen, required surgery in utero and was born prematurely with unique needs that would require 24/7 care. Along with having cerebral palsy, Owen was Deaf, non-ambulatory, G-tube fed and required support for all aspects of daily living.

Suddenly, Jennifer’s path had diverted from a fulfilling career to “extreme caregiving.”

Determined to continue with their family plans, Jennifer and her partner had another son two years later. While her partner’s career remained uninterrupted, Jennifer’s new caregiving role constrained her opportunities. “I didn’t see how I could continue to work, or how my partner and I could switch roles because I was so invested in caring for my sons and providing extra support to Owen. I felt I didn’t have options. I started to feel like a wilted flower,” she says. Their relationship eventually ended. While the boys’ father remained actively involved, Jennifer carried the responsibility for managing Owen’s care.

“It took a lot of finagling,” she says, referring to the necessity of toggling between several government ministries to get services for Owen, and then having to justify each new request in writing—and often on little sleep. “Whether or not I was given support always came down to Owen’s medical diagnosis, and never my own needs as his caregiver,” she says.

To maintain her skills and work toward financial independence, Jennifer began building websites for freelance writers in between home care visits. She completed 50 sites in two years and found it fulfilling on a creative level. Now, almost 20 years later, Jennifer is a successful self-employed web developer and communications strategist. She is also using her lived experience to raise awareness about what needs to change for caregivers on a national level.

Caring for Owen—who passed away 14 years ago at the age of 12—was both joyful and challenging, and allowed Jennifer to learn and grow as a person.

Even though Jennifer feels fortunate to have landed on her feet, it is a far cry from where she expected to be at this point in her life. While providing “extreme care” for Owen was necessary and important, she is aware of the opportunity cost.

“I never saw Owen as a tragedy,” she says. “It was an immense privilege and rare experience to care for my son for his entire life. I am also grateful that I have been able to pick up my own life again. Every caregiver should have options that allow them to flourish.”