Our volunteer Advocate Lisa Barkan writes about the importance of paid leave in a Baltimore Sun op-ed.
(Alex being cheeky while wearing a shirt with fish on it, which he loved.)
Despite the tragedy of Alex’s death, I was lucky. Unlike many working Marylanders, I had a position where I accrued leave, and my fellow employees could donate leave to me when I exhausted mine. I was able to care for and be with my son throughout his illness and receive paid leave. I was able to focus all my energy on taking care of my child. I did not have the added stress of needing to maintain a job. Above all, I was able to spend more time with him and to enjoy my child during his all too brief life. For these reasons I wholeheartedly support the Time to Care Act, filed as House Bill 8 and Senate Bill 275.
Unlike me, many working people in Maryland have no access to paid time off when they or their loved ones are ill. Many people have to choose between paying their rent or buying food and taking care of their loved ones. The Time to Care Act would create a strong paid family and medical leave program. I hope that by sharing my story, the General Assembly will realize that the Time to Care Act must be passed this session.
My son was diagnosed with a rare liver disease when he was only 6 weeks old. At some point after his diagnosis, his doctor told my husband and me that Alex was too sick for both of us to work full time. At that time, I was an assistant attorney general with the state of Maryland. I requested a part-time position, and the Attorney General’s Office was able to accommodate the request. Nonetheless, it was very difficult to work. I had to rush Alex to Johns Hopkins Hospital’s emergency room frequently, and Alex was admitted to the hospital on multiple occasions.
Alex’s liver continued to deteriorate. When he was 8 and a half months old, he needed a liver transplant, and my husband donated a lobe of his liver to our son. I took a four-month leave of absence to care for Alex. After I exhausted the leave I accrued with the state, my co-workers donated time to me. I was paid for the four months.
After his transplant, Alex was fine for a year and a half. I have fond memories of him during that time. One day, my sister visited with her daughter Emily, who is two months younger than Alex. Alex and Emily were running around the house. Suddenly, Emily hit Alex. He then looked at her with his index finger pointed and said, “Emmy sit down right now.” Emily immediately sat down. Wagging his finger at her he continued, “Emmy no hit, hitting isn’t nice.” Then they started running around again. My sister said that she needed to discipline Emily. I told her that Alex already did, and we both laughed.
Unfortunately, Alex developed an aggressive cancer caused by the immunosuppressant he took so his body would not reject his liver. The doctors were shocked. When my son was hospitalized for the last time on Sept. 11, 2001, I told my supervisor that I had to stop working. I could not juggle work and a critically ill child. A CT scan revealed that Alex had a tumor the size of a volleyball in his abdomen. The next day he was connected to a ventilator and given dialysis because his lungs and kidneys failed. He died on Oct. 30. Again, after I exhausted my leave, my co-workers donated leave time to me, and I was paid until I returned to work.
I am so grateful for my co-workers who donated their leave time to me when I exhausted mine. Many working Marylanders cannot take care of their loved ones. They do not have leave or co-workers who are able to donate leave to them. No one should have to choose between having to work or taking care of their loved ones.
The COVID-19 pandemic has reinforced how fleeting and precious our lives are. We need to pass the Time to Care Act this legislative session. It provides working Marylanders with an ability to take a breath. It allows them some paid time off to take care of themselves or a loved one without fearing that they will lose their job or be unable to pay for food, rent or their mortgage. It allows Marylanders to share the last days of their loved ones’ lives. I am grateful that I was able to take care of my son and to be with him. I cannot imagine losing any of that precious time. No one should.