Before I was Casey’s mom, I worked full time. My husband and I split the household expenses right down the middle. Our plan was to have a baby, hire a live-in nanny, and then for me to go back to work after maternity leave was up.
Nothing went as planned.
Casey came a few weeks early, and then we spent two months in the neonatal intensive care unit (NICU). My job was great about giving me all the time I needed to be there with my daughter. After she finally came home, however, they expected me to return to work.
Casey needed around-the-clock care, and the thought of going back to work seemed impossible. Luckily, my husband had a good job, so we tightened our belts and I quit my job to stay at home.
This meant half of our income was gone! We had saved up some, in hopes of buying a house, and felt like our savings bought us a little extra time to figure out a long-term financial plan.
We went through our savings very quickly between paying the 20% insurance deductible on all the equipment & supplies, co-pays for doctor visits, non-covered items, and the additional costs for non-standard treatments (hyperbaric, etc.). We were spending a small fortune.
Tim HAD to keep his job, so I was the one who stayed up all night suctioning, medicating, diapering, etc. Over the first two years, we just did what we had to do to get through each day.
We knew we had to get some home health nursing. It was an adjustment, but once we got used to having a nurse in the house, and once we felt she could manage Casey’s needs, I was finally able to get a few of my own things done. I could run to the grocery store, clean the house, see my own doctors, occasionally get some sleep, or meet a friend for lunch.
We added more nursing hours over the years and eventually added night nurses thanks to Casey’s Medicaid Waiver Program. When we had all our hours filled and a team of nurses that we felt were all doing a great job, I would flirt with the idea of going back to work.
But the same thing always happened—before I would even have time to get my resume updated, one of the nurses would leave (for any number of reasons), Casey’s care would get more complex, or we would end up in the hospital.
When you have a child with complex medical needs, your employment options are very limited. Any job I would have taken, I would have had to work from home so that I could be here to take care of Casey when nurses were not here (out sick, on vacation, or between nurses).
I would often have to take off work. It required two of us to get Casey to and from any appointment, and she had at least one a week. Any time Casey would not be doing well, I would not have been able to focus at work. I would have been a horrible employee.
Many parents take on odd jobs, work nights, sell stuff from home, or just find ways to do without. It’s really hard to be employed with a medically complex child at home. Thank goodness for the Medicaid Waivers that help to cover some of the expenses our children incur.
Hopefully, things will change and these programs will be more readily available for the children and families that need them. Until then, we will all have to do our best to find companies that understand and are willing to work around our complex lives.
You can learn more about Texas Medicaid Waiver Programs on this website.
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.