When I was pregnant with Casey my husband and I had planned to hire a live-in nanny. Help with the baby and the house would allow us both to continue working full time. We were expecting a healthy baby.
Then everything changed. Casey came into our lives with many medical needs. There was no hesitation - I was not going back to work. I wanted to be home with her to make sure that she had all the care and attention she needed.
This meant that our household income was cut in half. And our monthly bills also went up a lot with a newborn and all the added medical expenses. We tightened our belts and we made it work.
After a few years, we had our routine. Casey had nurses who would come in to help a few days a week. I started to think that I really wanted to either go back to school or get a part-time job. Finding a job where I could take time off a lot (Casey had appointments, she was ill, the nurse was out, etc.) without getting fired, seemed impossible.
I tried to find a job that I could do from home. But even these jobs would have times that I would have to commit to being available. There are a few jobs out there where you can do contract work and set your own hours. There are a few organizations, like Texas Parent to Parent, that hire parents of children with medical issues and are more understanding.
I worked in technology before I had Casey. While I really enjoyed my previous career, it no longer fit me. I wanted to go back to school to get a degree in nursing. Most of the nursing classes, however, needed me to go to a class on a set schedule. It took both the nurse and me to get Casey to and from appointments. And the nurses had their own lives and children. They took off fairly often. Many times, without much warning. I needed to be home with Casey and I could not commit to a class schedule.
It was frustrating. As soon as I felt like Casey was doing well, and that we had a good reliable nurse, something would change. The nurse would have to change her schedule. Casey would get sick. There was always something - right when we would start to feel comfortable.
I did take online courses, which allowed a flexible schedule. I was able to get most of the non-nursing courses covered by doing this. I also took a few contractor positions where I would work as I was able. One month I may work only a few hours or not at all. Then another month I may work a lot. It didn’t provide a steady income, but it was some additional income and it definitely helped.
Adjusting to the “new normal” really does impact every part of your life. Try not to get too frustrated. There are lots of options out there. Keep searching to find what’s right for you and your family.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.