Turning Grief Into Purpose

My daughter Olivia was born in 2016 with a full head of black hair and chubby cheeks. She was also born with a heart condition called hypoplastic left heart syndrome. Her one kidney was damaged, and she had a host of other issues due to a rare genetic condition called Kabuki syndrome.

Olivia and I spent much of her life in the pediatric cardiac intensive care unit at NewYork-Presbyterian Morgan Stanley Children’s Hospital. I had worked as a Spanish teacher, but today I am a nurse working in the very same pediatric intensive care unit where Olivia spent some of her last days.

When Olivia was sick, I challenged myself to pursue a career in nursing, with a focus on critical care, taking care of the sickest children in the hospital. Now I can’t imagine myself doing anything else. However, my journey to get here wasn’t easy.

Olivia had her first open-heart surgery at just 5 days old, and after many setbacks we finally brought her home at 3 months old. Just a few weeks later, she was readmitted to the hospital and underwent a second open-heart surgery. For the next six months, complications kept her in the pediatric cardiac ICU, which is for children who need acute heart care.

I was living in the hospital 24/7. I would feel frustrated when Olivia’s doctors would do rounds and I couldn’t understand the medical lingo. When she was intubated for three months, I wanted to understand why her providers made changes on the ventilator this way and not that way. That sparked a desire in me to educate myself. I would ask doctors to sit down with me and explain things — not to challenge them, but because I wanted to understand and learn in an effort to try to make the best decisions for her.

During the course of Olivia’s journey, we had to do things at home that I never envisioned doing. This included inserting Olivia’s feeding tube, measuring her oxygen levels frequently, and administering medications around the clock.

Olivia’s care team also inspired me to become a nurse. It was amazing to see how they got to know my child. Day in and day out, I watched in awe as strangers gave my child their time, attention, and love.

The nurses did everything they could to make us feel comfortable and cared for. We would bring in diapers with colorful designs on them and they’d try to match her socks with her diapers and her headband. They helped us decorate her room and did thoughtful things that mattered a lot, like keeping her room tidy. One nurse would draw little pictures of us as a family and hang them on the wall.

One day, I casually said to one of the nurse practitioners, Rozelle Corda, “I might as well go to nursing school since I’m always here.”

“Oh yes, you should definitely do it!” Rozelle told me. “You would be great at it!” Others also encouraged me, including Olivia’s neonatologist and her pediatric cardiologist, Dr. Stephanie Levasseur, who later wrote letters of recommendation for me while I was applying to nursing programs.

Before I could think about starting school, I needed to take prerequisite classes like biology, chemistry, and statistics. I started taking online courses while staying with Olivia in the hospital. I would sit in her intensive care room with my textbooks and my laptop and study there.

When Olivia was 9 months old, she was finally discharged from her six-month stay in the hospital, but from then on it was a revolving door. Problems like respiratory viruses and electrolyte imbalances would turn into frequent trips to the emergency department. More often than not, these trips would turn into admissions. The longest stretch we had without going to the emergency department was about two months.

Eventually, Olivia’s kidney began to fail. When it became necessary, she was admitted to the hospital to prepare for dialysis. Sadly, she developed complications and died in August 2018, two months shy of her second birthday. I have a deep, deep level of gratitude and appreciation for the people who cared for her that is never going to go away. They will forever have a special place in my heart.

My dream of nursing kept me going through the dark days that followed Olivia’s death. I still had three prerequisites to take, and then I started nursing school roughly a year after Olivia passed away.

There were still many obstacles to overcome. I was pregnant with my second child when I started nursing school, and having some physical issues. The first semester was tough, and I pulled out of school.

The next spring, I learned about an accelerated nursing program at Manhattanville College. I got in and started in May 2020.

By then, we were in the first wave of COVID, and it was a challenge to be in a rigorous nursing school program, which included rotating through different areas in hospitals to get hands-on skills with patients, during the pandemic with a newborn. Still, I loved the school experience, and when I graduated in August 2021, I earned the Dean’s Award and the Leadership Award.

When I decided to go to nursing school, it was always with the intention of working in critical care at NewYork-Presbyterian Morgan Stanley Children’s Hospital. Toward the end of the program, I started the application process so that once I passed my boards I would be set up to work here. I studied over the summer, took the exam less than two weeks after school was over, and passed. In November 2021, I started working at the hospital in the pediatric neuro intensive care unit where Olivia had spent some of the last days of her life.

People wonder how I can work in a place where I have so many sad memories. In order for me to do my job, that is something that I have to force myself to block out. You just keep going for the sake of the children and their families.

A few times, I’ve cared for a child and the family will start asking questions: “Oh, do you have any kids? How old are they?” I tell them about my two other children, Mila and Oliver, who are almost 3 years old and 9 months old.

I try not to talk about Olivia, because families are going through their own thing. On a couple occasions, she has come up. I’ve had two or three families who have said, “Oh my goodness. Well, you get it. Thank you so much.” Just seeing the gratitude in their eyes and faces has made this whole journey worthwhile.

During Olivia’s life, the hospital felt like my home away from home and the nurses like our extended family; they still do. The only way I could attempt to repay that is by giving back to other families.

No one really understands what it’s like to be a parent of a very sick child unless they have been in those shoes. I don’t think anything will ever be as fulfilling for me as being able to take care of a family and understand where they’re coming from. It’s my way of honoring my daughter’s life.