Square One

I have taken my son to an allergist every year since his food allergy and asthma diagnosis at age one. And every year, I sit with his doctor and we go over his test results, talk about how to manage his medical conditions, get medication refills and new forms signed. But this year, for the first time in a long time, I sat there next to my freckle-faced, athletic, smart, empathetic and whip-smart funny son and CRIED. Why? Because I was told his asthma is far worse than it should be for a soon-to-be 12-year-old boy, and that his lungs are literally failing him. FAILING HIM.

I’ve written on this blog for many years about John’s severe food allergies. I’ve traveled the country to talk about food allergy awareness and advocated loudly for change in school policy. I’ve written cookbooks and taught cooking classes. But what I haven’t always shared is our battle with John’s asthma. Not because I didn’t want to. But because I didn’t know how to. Talking about lung disease has never been easy for me. I lost my father when he was 52 to lung cancer, my mother to emphysema/pneumonia at age 59, and I have battled my own asthma and chronic lung infections as well as my siblings. When John was diagnosed at a young age with asthma, I thought I was prepared to deal with it. I thought I knew how to manage it. I was wrong. I had no clue.

Today John’s doctor had a “coming to Jesus” discussion with John and I. Based on his updated lung function tests, his levels were triple the normal amount in a child his age. In other words, his severe asthma at age 12 could likely lead to COPD (Chronic Obstructive Pulmonary Disease) by the time he is in his 20′s and 30′s (an extraordinarily young age for this disease) if he continues to not aggressively treat and manage his asthma every single day. At this point in our conversation, she didn’t address me, but HIM. My preteen son, who more often than not is forgetting his Epi at home, eating things without checking and not taking his daily inhaler. Full disclosure: I have been gone and an absentee mom all summer traveling, going to school etc. and haven’t been checking as closely with his asthma medications. I feel totally responsible for the continued deterioration in John’s lungs. A horrible, horrible feeling.

She looked at John in the eye, and asked him, “do you really want to live a life with daily meds, steroids, oxygen tanks, and giving up an active lifestyle because you can’t walk a flight of stairs? What if you couldn’t shoot a basket or play a game of soccer? Do you want to give up the things you love because you aren’t taking responsibility for your life today? Don’t you think at your age you should become responsible for keeping your Epi in your own pocket and remember to take inhalers on your own in the morning and night?

She then looked at me, and told me flat-out that John’s lungs are in unusually bad shape for a child his age with no other environmental risk factors. She couldn’t believe that he is a starter for his travel basketball and soccer teams, and most of the time plays entire games without ever getting called out. She said the inflammation in his lungs is severe; a normal level is around 10, his is 65. She said not treating his asthma now while his lungs are still developing will guarantee COPD at a young age, an irreversible disease. She explained our hearts are our body’s engine. But engine’s need fuel…which is our lungs. Without the fuel (lungs) our engines (heart) stops. She also reiterated that based on John’s lungs, a simple cold to him could keep him in bed for weeks, or in the hospital, and continue to damage his lungs permanently. Based on today’s results, his daily medication was increased to the max for a child his age, in order to aggressively start reversing this damage. Next course of action….using medications approved for COPD.

I sat there painfully numb. As she described images to John of people with COPD taking steroids and using oxygen tanks, I immediately flash backed to my own parents’ lung diseases. As she spoke to John, I remembered my father’s lung cancer destroying his entire body and mind in a matter of months, faster than I could even process at age 14 that he was going to die. And disintegrate into someone I barely recognized. I then remembered my mother, my best friend and angel, going into the hospital December 23, 1996 for a back injury (brought on by the overuse of steroids to treat her emphysema) and never coming out. I remembered her weak body and lungs contracted bacterial pneumonia not once but twice while in the hospital, putting her into intensive care. And then ultimately, her heart stopped. Because the fuel (her lungs) ran out. Just like John’s doctor described. Then I sat there and sobbed quietly because I thought, not only did I fail to help prevent my own mother’s death by demanding her to quit smoking or get healthy, I didn’t check in on my own son for his daily asthma treatment. Here I was, running around doing this and that, only to find that I was failing my own son at home. In a moment, I felt such shame it was unbearable. Last year I first learned of the severity of my son’s asthma. This year I learned it got even worse. Under my watch. I realized nope….I can’t do it all. No way.

John told the doctor, “I thought all these years my food allergies were the thing that could kill me. Never really thought about the asthma”. She reminded him that BECAUSE of his SEVERE asthma, and because of his SEVERE food allergies, he would go into anaphylaxis into SECONDS. Mere seconds. My son could die. In seconds. Barely enough time to remember where the hell his Epipen was if he maybe forgot to take it with.

Today was extraordinarily painful for me as a mother. Because I remembered what it felt like to watch my parents struggle with their health. I realized I failed in balancing my school and work and family life. And I remembered that advocacy, education, and awareness starts at HOME. It starts with me. It starts with John. BUT it also starts with my husband. It starts with his brothers and sister. It starts with all his aunts, uncles and cousins. It starts with his teachers, his friends, and his coaches. I can go talk at conferences, and schools and where ever else for years. I can hope that PTA’s and school nurses and moms who demand birthday parties at school will open their hearts a little wider with understanding for the health and well-being of these kids with medical disabilities. But none of it, and I mean NONE OF IT matters if we don’t start right at home. Something I personally needed to remember.