When my four-year-old son was recently discharged after undergoing facial reconstructive surgery at Johns Hopkins Children’s Center, many friends and family members asked how I was holding up, how I was handling the stress and lack of sleep and all that comes with spending a week in a hospital. Those who have been through the experience know that the last thing you’re thinking about is yourself.
Being at a children’s hospital — especially one as world renowned as Hopkins — was one of the most humbling experiences that I will ever have. We spent our days surrounded by children who had been there for months, who had been diagnosed with chronic illnesses and who aren’t necessarily going to get better. We were awoken at night by the screams of children crying out in pain, while our child, for the most part, slept soundly. We felt guilty admitting that we were heading home when so many seemed to have no end in sight.
I was taken aback during our first day in the pediatric ICU to see how many children — and oftentimes babies — were there by themselves in those cold, sterile rooms. When parents started showing up in the evening, it suddenly occurred to me that people who are trying to hold onto their jobs can’t necessarily spend all day, every day next to their child’s hospital bed. We were lucky in that we only had to figure things out for a week. I can’t imagine how parents cope when they have a child facing a long-term illness but no paid family medical leave.
Even Owen picked up on what was happening around us. When we took him for a walk one day, pulling him along in his big red wagon, we passed a room where a young boy was sitting alone inside. Owen immediately looked up at me and said with concern, “Where are that boy’s mommy and daddy? Why is he in there all by himself? He shouldn’t be by himself.”
I spoke to a mom in the family kitchen one evening whose 18-month-old daughter was about to be discharged with a feeding tube that would have stay in for at least two months. Her day care won’t take children with feeding tubes. I was at a loss for words when she said, “I don’t know how I’m going to be able to keep my job. I don’t know what I’m going to do.”
Given that I spend my professional life advocating for family friendly workplace policies, I didn’t expect to be so overcome with emotion when I saw how these policies — or lack thereof — play out in a place like a children’s hospital. Before this experience, I certainly thought I believed in the importance of paid sick days and paid family medical leave, but nothing could have prepared me for what it takes to be a hospital parent.
Once you walk through the doors of that children’s ward, it doesn’t matter your background, your income, your education level, etc. We are all just moms and dads who would give anything to be able to take the place of our kids, who are desperate to see them get through whatever battle they’re facing with the least amount of pain possible.
It is well established that children get better faster when their parents are able to care for them. I’m grateful that I was able to be a mom at a time when my son needed me most, but I also know that I’m one of the lucky ones. In a state where over 700,000 workers lack paid sick days, we all need to work harder to convince our elected officials that no parent should have to choose between the pediatric ICU and their job.
Originally published in the Baltimore Sun.
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