At 3 1/2 years old, my son was the picture of health. I have an actual picture. He is in jammies, wearing my sunglasses, laughing and chalk coloring the driveway while the sun is shining on his blond hair. That picture frequently flashes in my mind. I posted it on Facebook, my happy, healthy boy. There was no warning and nothing to prepare me for the months ahead.
First, it was a cough and runny nose. I am a PA and work in the ER. It was just a cold, then pneumonia. Antibiotics were necessary, but later started copious diarrhea. C. difficile. The antibiotics upset the gut and toxins were released in the intestines. We gave him an antibiotic for that, and he got better. But, two days after that picture, we couldn’t wake him, and I took him into work. From there, he was admitted to the hospital for a night of hydration. That one night turned into 19 inpatient days and three months of nasojejunal (NJ) tube feeds.
My pint-sized boy has always been an active and playful kid. By day 3 in the hospital, he was waking up crying and moaning in pain. Desperate, I pulled out my iPad and picked Frozen. Since we don’t do screen time at home, it was new, but we had heard the songs.
When he hurt a lot or would cry, I would play Frozen, and he would settle, a calm washed over him as he absorbed the music. He worsened, and we were transferred to another hospital after six days, and spent 11 days in isolation, unable to leave our small room. Frozen remained a calming force. We listened to the soundtrack while we colored, sorted beads, did Play-Doh and took bed baths. When he hurt, Let It Go, when he cried, Do You Want To Build a Snowman, bathtime, Frozen Heart would play. After isolation, I would pull him through the hospital in a wagon with his IV pole, pumps, and meds attached, listening to Frozen songs. At night, when his bedbath was done, meds were given, and the formula in his feeding tube changed, I would tuck him in and start Frozen while I showered. Anna, Elsa, Olaf, Kristoff, and Sven were his companions.
One day there was music therapy. I thought it would brighten what had been a rough day. I had to carry him, and when we approached the door, he screamed and refused to go into the room. There were several kids already there, two without any hair. My heart hurt for their parents, their battle far worse. A nurse brought a chair to the hallway so we could listen from outside. They asked for requests, and my son whispered, “Frozen.” The child life specialist heard him somehow, and they started to play Let it Go. I felt his small tense body relax in my lap as he sunk into me and started to hum along. I started to cry. Someone brought me a box of tissues. Frozen was the only way I could calm his anger and hurt, and I felt like I was losing him in a way medicine couldn’t fix.
One day, there were visitors in the lobby, including Anna and Elsa. He was so excited: He was going to meet Elsa! His daddy was visiting, and we went all together. It was hard to see my little boy hooked up to tubes, thin and pale, wobbling over to them, having just regained enough strength to walk alone. He was being shy, and Anna and Kristoff kept smiling and trying to make him laugh, showing him Kristoff’s funny shoes. My little boy smiled. He laughed. Tears rolled down my face. My husband noticed but said nothing. That night, he said, “I saw you crying today. I know you were so happy to see our son smile.”
I never told my husband the truth, I was crying because of the sweetness of these Frozen characters with my ill son, trying to brighten his day, and because of the sad smiles, they gave me. I didn’t know how to be a mom of a sick kid, a kid ill enough to be in this hospital with people working to cheer him up, how to be the mom of a kid who wasn’t okay. As a medical provider, I was supposed to be the one in scrubs taking care of other people’s sick kids. I didn’t know how to be here, on the other side, watching my son with Anna.
Over the next few months, his NJ tube was removed, he got stronger, and we were home, back in a routine with doctor appointments and procedures. We listened to the Frozen soundtrack almost daily. We went to Frozen on Ice, and now he regularly “ice skates” around the house performing the songs. The music still calms him. The songs still soothe him.
At Christmas, I smiled when he asked Santa only for an Elsa doll and castle. No one understands the connection like me, Frozen is his safety, and calmed him against a terrible storm. It saved him from the prison of isolation and weeks in the hospital. So, when people say Frozen is a girl’s movie, I think, holding back tears, it saved my son. Let It Go still causes me to cry, usually when we are singing along in the car and flashbacks of the really bad days at the hospital flood my mind. The days when I couldn’t calm him, couldn’t take the pain and frustration away, when I failed as a mom and PA. I look in the rear view mirror and see his smiling face, and I am reminded of the picture, in my sunglasses, coloring the driveway in the sun, the days before Frozen. I know that as much as things have changed, Frozen will always mean more to us than words can say and I will always be thankful for the calm it gave us during our toughest times.
Nikole Hedges is a physician assistant.
Image credit: Shutterstock.com