I was trying to simultaneously greet my son, sign him out of school for a physical therapy appointment, gather his bag and equipment from one of his aides, and get a daily report from the other. For some reason, I still looked up as another adult entered the elementary school office. I froze when I recognized who it was.
Our eyes met, and she uttered a hesitant, “Hi. Can I . . . can I give you a hug?” She opened her arms. I opened mine. We embraced. It was a long, firm hug. We eventually released each other and stood wiping tears away in front of my son, his aides and the school secretaries.
Isaac is a Kindergartener: 6 years old, happy, goofy, and completely in awe of the world. He’s also got a broken gene. Just one of them, but it’s enough to require an aide to follow him as he gallops down the hallway in his walker. He is one of the bravest people I know, but he’s still just a kid. There are things that scare him to death.
Every few months, Isaac receives Botox injections in his legs. They loosen his muscles, giving him greater mobility. Isaac has always been afraid of the clear plastic anesthesia mask they put over his mouth for these procedures. The first time, we had to hold him down while the mask was forced over his mouth. He fought his way off to sleep screaming, “No! No! No!” After it was over, we sat by his bed waiting for him to wake. He opened his eyes, looked at my wife, and declared, “I said ‘No!’”
The last time around, he woke with casts on his legs. He would wear them for two weeks, another way we keep his legs flexible. When his casts were removed, the woman operating the saw cut too deep, and drove the blade into Isaac’s ankle. He spent a month in a wheelchair. Isaac had good reason to be anxious about the next round of Botox.
We’ve tried to reduce Isaac’s mask anxiety. Doctors have used “silly medicine” to make him forget those final, terrifying moments. Isaac has not forgotten. Our hospital has a Child Life program, where a representative helps Isaac decorate his mask with stickers and coat the inside with Chap Stick, improving its smell. Isaac loves this, and insists on bringing these masks home, after he screams himself off to sleep.
A tense Isaac sat in his hospital gown while the anesthesiologist went through all the required questions before his most recent procedure. She had worked with Isaac before and knew his struggles. After finishing the necessities, she turned to Isaac and asked, “What kind of mask are you going to make today?”
Isaac quickly replied, “A Darth Vader mask.”
She paused for a second, “Ok, yeah. . . Let’s make a Darth Vader mask!” She left the room in search of markers, and was shortly replaced by a fully briefed Child Life member. We then spent a few minutes attempting to decide what the inside of Darth Vader’s helmet smells like. What variety of Chap Stick best approximates the odor found inside a helmet worn for decades by a man after he’s been burned by lava? We went with Cherry Coke.
Isaac colored the mask with gusto, meticulously covering every millimeter in a delayed, disjointed, frustrating process only the parent of a child with a motor delay can truly understand. I began to notice a crowd had forming in the hallway. The operating room was ready for Isaac, but the mask wasn’t finished. Someone poked their head around the privacy curtain, and the anesthesiologist held up her hand. The team waited, paused the schedule, so that my silly little son could finish his Darth Vader mask.
As he rolled into the procedure room, Isaac already had the mask firmly planted over his mouth. He entertained the crowd with his best impression of Lord Vader’s loud breathing, until the anesthesiologist connected the tube to the mask. Isaac declared, “May the force be with you,” in his deepest voice, took two more breaths, and fell asleep without a tear.
Three days later, I stood in the office of Isaac’s elementary school, and watched my son’s anesthesiologist walk in the door. This woman could have shown up to work and just done her job. She could have punted the Vader Mask dream to Child Life. She could have said the schedule was tight and there wasn’t time for custom masks. But she didn’t. Because she didn’t, a moment that was filled with all the tension and anxiety of a 6-year-old boy who had already had a pretty tough year was transformed into his favorite hospital moment. Hell yes, I gave her a hug.
Nathan Hackman is a stay-at-home dad to four boys, one with cerebral palsy. He writes about the amazing adventure of parenting with a few extra challenges. In his free time he . . . doesn’t have free time.