In My Story Of Parenting a Chronically Ill Child, I Choose To Be The Protagonist.

Early in my teaching career before I had kids, I had a conference with a mother whose son was doing beautifully in my class. As I spoke, she cried — not eyes welled with pride, but real tears.

“You don’t understand, he was a preemie. I just can’t believe he is doing so well,” she said to me. At the time, I didn’t understand her reaction. Her son was 14-years-old. Why, I wondered then, was she talking about his birth at his ninth-grade conference?  

Now, I understand that this mom had a narrative through which she processed her son’s life: he was the underdog who overcame a rough beginning and struggled to thrive. This narrative enabled her to find context and meaning for her experience.

Over the first three and a half years of my son’s life, I created a similar narrative. He is our second child. I remember feeling a calm excitement when I was pregnant with him. Our daughter was an easy child with lots of personality; we felt like we had parenting under control. We thought we knew what to expect.

Then, six weeks before my son was due, my water broke. Our son was born a few hours later, beginning our whole new experience of parenthood. Our son’s stay in the NICU was relatively unremarkable. But, once we got home, the difficulties kicked in. He had trouble nursing – he would cough and choke and cry. He started getting pneumonia every few weeks, landing him in the hospital on supplemental oxygen. For a couple of years, he required a feeding tube because it was not safe for him to eat by mouth.

We were thrown head first into a world we did not know. Doctors’ appointments, specialists, shuttling to and from the hospital, reading medical journals, feeding our child through a tube. As rough as it was, we were lucky. After three long years, my “preemie” was cured. We figured out the cause of his problems, he had surgery to address the issue and it worked. The long nightmare was over.

We came up for air, reflecting on our good fortune and the lessons we learned from the experience. We felt hopeful, and became pregnant with a third child, a daughter. She was our calm after the storm — until a new narrative began. At about 8 months old, she started getting recurrent pneumonia. Once again, we found ourselves in crisis mode. It all felt familiar. The same doctors, same symptoms, same feelings of urgency.  

But while my son’s narrative had a neat ending, my daughter’s did not. After two years of illnesses and hospital admissions, she was diagnosed with a genetic, lifelong, progressive lung disease.

This was a hard reality to swallow. Unlike before, there would be no light at the end of the tunnel. My daughter’s narrative is much more difficult for me to construct. It’s one of a bubbly adorable child who loves to sing and dance. It’s also one of a chronic lung disease that will impact the rest of her life. It is a narrative still unfolding.

As I try to reflect on the past six years, I struggle to write my own narrative. Not my children’s, but mine. Who have I been through all of this? Who will I be going forward? It’s easy for me to feel helpless in this story. I did not make my children sick. And I cannot cure them. I cannot take away their pain, no matter how much I try. My daughter will always have this disease.

Surviving through one crisis only to face another, I feel dazed.  The constant pull between my responsibilities at work and my life at home is exhausting, not to mention the added work of medical bills and constant insurance battles. I have cried often at work; frequently holding it all together seems impossible. I live with the reality that a call midday from our babysitter or daycare will more likely than not be an emergency. I have to be on guard all the time. There are times when I feel I don’t have any emotional energy left to be a friend to others.

I think about how these experiences have changed me emotionally. It’s never easy to watch your child suffer. But it becomes all too common when contending with a chronic illness. I remember a friend telling me that she can’t handle taking her children to well-visits at the doctor because she can’t watch them get shots or blood drawn.

“Oh, how I wish that would impact me,” I remember thinking to myself at the time. Dozens of times I have held my children down to get stuck for an IV; too often I have held a delirious child as he or she woke up from anesthesia. I have become numb to the pain. When my daughter was having ear tubes placed in an outpatient facility, they took her back to the operating room and the nurse turned to me and said, “Wow, mom. You are the first mother to be here who is not hysterically crying.” Hearing her surprise made me cry. “This is a routine 15-minute procedure, I can’t get worked up about it,” I responded.

In crafting my own narrative, it’s natural to focus on what has happened to me. But my experiences over these past six years have taught me that no matter how easy it might seem to fall into a passive role — to bemoan our bad luck or wish away our troubles — that would be giving up. I may not have agency over my children’s DNA, but I can control my narrative. I want to be a strong protagonist. I want to recognize my agency and choose positivity.

I am a different person and parent than I ever would have imagined. How I live with my situation defines who I am. I have researched innumerable topics about various diagnoses that were suspected or given to my children, learned how to read every report, looked at every chest x-ray.

Once I accepted my daughter’s diagnosis and it became real, I had to take control and restructure my life. For better or worse, there was the finite reality of a diagnosis. As painful as it was, it gave me some sense of freedom: I knew what I was dealing with. I took a step back and re-evaluated my life, my career, my daily routine. I made the difficult decision to leave a job I loved so I could work part-time and closer to home. This is not a decision I would have allowed myself to make during the years of my son’s illness.

My life is blessed and I am deeply grateful. I have a loving husband who is a partner in every aspect of our family (except maybe the worrying aspect). I have a job that brings me great satisfaction. I have supportive family, friends, and community. I have three incredible children who bring me tremendous joy and pride.

I don’t take any of this for granted. This gratitude is invaluable. But sometimes it can paralyze me. Fool me into thinking that because I have these blessings, the rest shouldn’t feel hard.

Here I am saying it out loud: “It’s not easy parenting a child with a chronic illness.” I have accepted that and am learning to live with it. And in writing my narrative, I need to simultaneously hold both realities of my life – the gratitude and the hardship. I need to give voice to my challenges in order to assert my agency over them. My experiences have taught me how to set the tone of my own story. And, just like everything else in my life, I’m trying my best.