Aisha – Childhood Surgery and Impossible Decisions

My son Alex was born in 2006 and has overcome challenge after challenge his entire life. Alex has Congenital Obstructive Hydrocephalus, Cerebral Palsy, Epilepsy, asthma, and is severely developmentally delayed.  Alex also has torn retinas in both his eyes and moderate to severe hearing loss in his right ear. He is my warrior.

When Alex was about 3 or 4 years old, I found out about a surgery he could have to help with the tightness in his legs. But I put the surgery off because I didn’t want to add another procedure to his long list of surgeries. In addition to that, I had to figure out how I would be able to arrange for my son to have this surgery since I was balancing all of my other responsibilities as a single mother.  

In 2013, when Alex was 6, he began learning how to walk, but was having a difficult time. Motivated to get my son the help he needed, I decided it was finally time to get him the surgery. The surgery would implant a hockey puck-sized pump into his stomach. The pump helps people with high amounts of tone in their muscles to do everyday tasks that most people take for granted, like getting dressed, walking, and taking a bath without assistance. 

Initially, the doctor said Alex would be hospitalized for only a few days, a week at the most, following the surgery.  A week turned into two weeks, two weeks turned into a month, and before I knew it, we had spent half the summer on the rehabilitation floor of the hospital. I’d blown through nearly all of my PTO in that time. I was haunted by the thought of what would happen if Alex or I got sick later in the year since all of my leave was gone. What would I do?

I realized that neither Michigan nor the federal government had a paid family leave policy. So, I was left with only two choices: (1) go to work, leave my son who needed me, and continuously ask family and friends to sit with him, or (2) don’t go to work and use up the rest of my PTO. 

At first, I had help from family and friends that would sit with Alex when I was at work. When family and friends couldn’t help any longer, I went to the rehab floor counselor looking for more assistance. After that visit, Alex was provided with a “sitter” that would sit with him for a short while, while I was away. In the end, when I exhausted all those resources, I was forced to leave my son at the hospital alone. 

Leaving my son in the hospital in order to continue making money has been the hardest and most gut-wrenching decision of my life. I want to stay with my son who pleads and cries for me to stay, but I know that if I do, I would do us both a disservice. This back and forth decision I am constantly making is nothing new. One in 3 Americans have or will face this hard decision every day – the risk of losing their jobs and pay in order to support a loved one that is sick.

As it stands today, Michigan’s paid sick law offers a minuscule amount of time offered to part-time employees. “For every hour worked on a biweekly basis, you will receive 0.033334 hours of paid sick leave”. This means that I have to work 30 hours to accrue 1 hour of paid sick leave. That means I have to work approximately 4 months to earn one 5-hour shift of sick time. These are only hours worked in Michigan. This policy is clearly not realistic for any adult, especially a parent.