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Surviving Teenage Denial of Chronic Illness

It is Asthma Awareness Month, but for parents of kids with asthma, every day is a ritual of "Do you have your inhaler with you?" as you send them off to school. By the time they transition from elementary to middle school, they are fairly self-sufficient, and you no longer have to ask.

Until they turn 13. Suddenly, they become immortal and start "forgetting" their inhaler because they "forget" they have asthma. Running day is the day the Physical Education (PE) teacher enforces running a mile or two each week. It's a great idea to combat childhood obesity and increase fitness in our young. Running day raises the heart rate of parents of asthmatics - we hope we don't get a call from the school stating our kid has had an asthma attack on the field. So the morning ritual is, "Do you have your inhaler with you? Don't forget to take it before you run."

My 13 year old daughter is a very fit, healthy ballerina. Last week, on Running day, I learned on the way to school that she had left her inhaler at home. I turned the car around and drove back and waited while she ran in to get it. It was the typical busy morning. I had an 8:20 ferry to catch and a 9:30 meeting to make it to. After dropping her off at school, I looked at the front seat and saw the inhaler hadn't made it from the car into her backpack. It felt like one of those tests from the Great Spirit or whatever higher power you believe in - are you going to put your kid first again today in this moment? I turned around and drove back the school. I stormed into the office and asked them to page her. No way I was letting the office staff hand it to her. "I need to yell at her," I explained. We can love someone and still be angry at them, right? To her credit, my daughter stood quietly and took it while I demanded to know "If you have an asthma attack out on the field while you are running, and don't have your rescue medicine with you, what am I supposed to do far away at work? What can the school do for you?" I kissed her, hugged her and said "I love you, " and off I went to work. I made it to my meeting and she survived another Running day.

Things didn't go as well this week, a busy week of rehearsals and two evenings of performances. The last thing I said to her as we left the house the day of opening night was "I put your inhaler in your lunch bag." A friend's mother picked them up at academic school and took them to ballet school for warm-up classes. I left work early, armed with food and drinks to get them through afternoon rehearsals to the evening performance. Another student's father chaufeured them to the theater. I went back to work, oblivious to the drama unfolding in the theater, 5 blocks from my office. My kid had an asthma attack between the dress rehearsal and the 8 PM performance. She didn't have her inhaler. She confessed later that night (2 AM, wheezing again) that she had thrown it away with her bagged lunch. She tried to reach me on my cell phone, but with all the calling & coordinating, the battery was dead. In all the commotion, she had missed the information that I was patiently sitting at my desk at work, and for some reason thought I was at the movies (?). It is just as well she couldn't reach me. If I went searching through her backpack for the non-existent inhaler...Long story short, another mother, pediatrician, was backstage with a disposable inhaler and came to her rescue, but not without major drama.

My daughter made it through the performance and I, blissfully unaware of the problems, was outside the stage door with the traditional bouquet of flowers to hand off lovingly to my little star. I was beside myself with anxiety when I heard the story. She came into my bedroom wheezing at 2 AM, "Mom, don't be mad..." and confessed she didn't have her inhaler because she had thrown it away at school. I dragged out the nebulizer machine and gave her a treatment. Two hours later, still awake, I embraced the fact that, as a teenager, she feels immortal. As a teenager, she doesn't want any reminders of any chronic illness or any thing that makes her different. She is in a phase of denial about her asthma. In those hours, I embraced the fact that for 13 years, as a former ICU nurse, I was able to avoid hospitalization for her. I accept that she may, sometime over the course of the next seven years, end up in the hospital due to non-compliance. I am no longer in control of every aspect of her life, including her
disease management. I went to the pharmacy first thing the next morning and got her new one. I hugged her hard, as I handed it to her. "If you die, I'll kill you," I said, laughing through my tears. I didn't want to, but I had to let her go. She has to breathe.

Thank you Bobcatnorth for use of photo, Sugar Plum Fairy in the Nutcracker.

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