By Kristin Daly, MSN, ANP-BC, AOCNP®
One day, years ago now, my son and my daughter were listening to a bedtime story. My husband was reading them the Cat in the Hat, one of their favorite stories. And at the end, my son gave one of those happy little hops that kids give and said to my husband, "Dad you're so cool, you're like the Cat in the Hat." And I was walking by, putting laundry away or something, and I sort of turned and said, "If Dad is the Cat in the Hat, then who am I?" I was thinking I was the absent, completely irresponsible mother or Thing One or Thing Two.
And he thought about it for a minute, which is always a bad sign, and he got that look that kids get when they have the right answer, like "ding-ding," lightbulb, and he looked at me and said, "You, Mom? You're the fish."
I was like, "The fish?! The totally no fun, everything you're not supposed to do one, the killjoy?" Dad's the Cat in the Hat and I'm the fish?" Great.
Now, I'm sure you're wondering what's the big deal. In every family, there's one stricter parent and one more permissive parent, even though sometimes you switch roles, right? So you're the fish. Suck it up. No big deal.
The reason it really bothered me at the time was that my son was finishing up 2.5 years of chemotherapy for leukemia. On the day that the doctors told me that my 5-year-old son had cancer, I immediately knew, with complete clarity, three things:
- Number one: I knew that he would survive, in my gut. I actually didn't tell anybody that for years because I was afraid I would jinx it. I didn't even tell my husband.
- Number two: I knew that it was going to be really, really hard, for Conor and for our family.
- And number three: I knew I would do whatever it took for him to get the medicines, treatments, therapy, and anything else he needed. Whatever I had to do, he would get it, to not just survive, but to be as healthy as possible.
I'm an oncology nurse. At the time I was a new nurse, only three months out on my own in an inpatient setting. So when my son got sick, I took a leave of absence, then went back to work part-time so I could manage his treatments, which is another part-time job in and of itself. What that meant in practice is I went to all his appointments, treatments, scans, labs, therapy, and things like that. It also meant that I was the person who had to say to my 5-, 6-, and 7-year-old as he grew up, things like, "Yes, you do have to learn how to take pills. Yes, you do have to have those incredibly painful leg shots and I will hold your leg. Yes, you do have to wear braces in your shoes because of the weakness in your legs from your chemotherapy. And yes, you do have to go to occupational therapy so you can learn to use a pencil correctly like the other kindergarteners.” These are the things that I had to keep saying.
One of my biggest fears during his treatment was that in years to come, when he would look back at his childhood and think of me, his mother, he would remember all of those times that I made him submit to procedures or treatments that hurt and frightened him. I mean, I don't know about you, but I remember a lot of the really painful things from my childhood and that was what I was afraid that he would remember. And I just kept thinking, you know, I'm his mother, the person who is supposed to protect him, and instead I'm making him do these things that he really doesn't want to do. If you look at my son today, really the only outward sign of his illness is a pretty large port scar on his chest. But he's got scars you can't see, and I have them, too. We all do. The thing that I was so afraid of and thought about a lot, was, again, I'm his Mom—your parents are supposed to protect you and keep you safe, and yet I was the person who kept saying, "You have to do this, you have to do that." And I couldn't help thinking, "What kind of mark is that going to leave?"
So, that's why when Conor looked at me and said, "You, Mom? You're the fish," it was like a hot knife to my heart. My worst fears confirmed.
One day a few weeks later when no one was home, I went to the bookshelf and took down the Cat in the Hat and I sat and read it. When I finished the story, I closed the covers of the book and just had an incredible sense of peace, for the first time in a really, really long time. Because if you read the story, if you go back and look at it, the Cat in the Hat is great—he's fun, he's chaotic, he's crazy, but he doesn't love those kids. The character in the book who loves the children is the fish. The fish is there before, during, and after. The one who says the hard truths, says the necessary things to protect and keep those kids safe. That's what the fish does, and at great risk to life and fin: he even flips out of his bowl. What my son was telling me—and he never thought of it as a bad thing, by the way, when he told me I was the fish—was that he understood. He had much more insight than I did, because he knew that I loved him and understood why I had to do those things. So, as a result, I can proudly tell you all, "I am the fish."
This is a story I have told before, but like many stories that are especially important to us in our lives, their meaning and impact can evolve over time in response to personal and outside events—like, say, a pandemic.
Oncology nurses see, say, and do hard things every day in caring for our patients. I always remember that the word care comes from the Latin word caritas, which means love for all or compassion, because what we do for our patients is indeed a form of love.
When my son was diagnosed and being treated for cancer, and even today, so many people told me that they admired me because "I just couldn't deal with that." I would always say that of course they could, because what is the alternative? There is no choice when those you love are facing illness or injury.
But I know that all of you have heard people say a similar thing to you: "How do you take care of cancer patients? I just couldn't do that." But you do. You all have made and make the conscious choice to provide care and love for your patients, even though that can be difficult and wearing on the soul.
So I want to personally thank you, the oncology nurse, for providing care during a time that has made an always difficult profession exponentially harder. You reinvigorate and strengthen my purpose as an oncology nurse and nurse practitioner. Just knowing that you are out there helps me, even if I can't see or talk to you, even when I am stretched thin, weary, or just overwhelmed. I see you in the way that counts. I appreciate you. I admire you for continuing to show up and be there for patients struggling to deal with cancer during a pandemic.
So I would like to change the ending of my story, and today I can truly say:
We are the fish.
Editor’s note: This story was submitted as part of the “Storytelling: What Keeps Us Going” session held during the 47th Annual ONS Congress® on April 28, 2022.