On Mother’s Day, Feelings of Gratitude & Frustration
Owen was discharged from Hopkins last Tuesday morning. Before we left, the drains were removed from his head and back, he was given his first bath in nearly a week, and we were told that he had been the talk of the floor amongst the nurses because of his cheerful attitude. He literally skipped down the hall waving goodbye to everyone as we left.
Our instructions for home are to keep him from acting like a four-year-old boy (no running, no jumping, no wrestling) and to ensure that he doesn’t touch or sleep on his cheek for the next month. Owen is well aware that he has a new cheek and says that he will tell everyone that his doctors are the only ones allowed to touch it. We’re unsure of when he’ll be able to return to preschool but are told that it could be as early as the end of next week.
Over the past few days, so many friends and family members asked I was holding up, how I was handling the stress and lack of sleep, especially given that I’m more than 33 weeks pregnant. I have no response for this. Being at a children’s hospital – especially one as world-renown as Hopkins – was one of the most humbling experiences that my husband and I will ever have. While I wouldn’t wish such a major surgery on any child, the reality is that Owen is a healthy boy who is going to thrive. Compared to what we observed in those halls, we have nothing to complain about.
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 ours – for the most part – slept soundly. We felt guilty admitting that we were heading home after five nights when so many seemed to have no end in sight.
We both had incredible support from our bosses. We both have paid sick days so we were able to be there together for every minute of Owen’s stay. My only job while I was at Hopkins was to be his mom. Every time he was poked or prodded, I was next to him to hold his hand and whisper in his ear. I like to think that nothing could have pried me away from him during those long days, but I also know that I had the luxury of not having to worry about how my family would make ends meet while my husband and I were away from work. This should be the norm – not a luxury – but in our country where 40 percent of workers don’t have access to a single paid sick day, it’s not.
I was especially 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 in the hospital with their child. We were lucky in that we only had to figure things out for about a week. I can’t imagine what happens to parents who don’t have paid family medical leave when their child is facing a long-term illness.
Even Owen, being as young as he is, picked up on what was happening around us. When we took him for a walk in his big red wagon on our third day, we passed a room where a young boy was sitting inside on his bed. 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 struggled with finding the words to answer.
Toward the end of our stay when he was feeling particularly well, we wheeled Owen to the “Great Room” to distract him with arts and crafts. We had to pass through the pediatric oncology unit to get there. There are no words. None. Standing amongst so many small children with their strikingly bald heads, I have never had to work so hard to keep a smile plastered to my face when I wanted to crumble into a ball right there on the spot.
I spoke to a mom in the family kitchen the night before we left whose 18-month-old daughter will have to go home with a feeding tube that has to stay in for at least two months. Her daycare won’t take children with feeding tubes. She looked at me and 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.”
The reality is that I don’t know how anyone could go through an experience like this and not leave with a newfound appreciation for their child’s health. Hospitals represent the stuff that life is made of at its most basic core. 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 our kids get through whatever individual battle they’re facing with the least amount of pain possible. We feel helpless and are completely at the mercy of the nurses and doctors whose every word we hang on.
Owen’s care couldn’t have been better. The facility itself couldn’t have been nicer. We took comfort in knowing that we were at a hospital that is regularly ranked best in the world. But still, kids shouldn’t have to be there. They just shouldn’t. I thought I appreciated having healthy children before all this but I didn’t – not really. It took having it thrown in my face to fully understand how lucky we are.
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 mom.
On this Mother’s Day, I’m most grateful for the chance to be a mom whenever and wherever my children need me. 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.