by Melissa McCoy
As any parent knows, raising children is a wild ride, complete with unexpected twists and turns and the occasional emergency room pit stop. For me, the journey took a particularly steep turn in October 2016, when my son Connor was diagnosed with Addison’s disease. If you’ve never heard of Addison’s disease, don’t worry—we haven’t either. In fact, Addison sounds more like a fancy restaurant than a rare disease in which the adrenal glands don’t produce enough hormones. But trust me, there’s nothing special about it.
It all started with Connor not being himself. He was lethargic, moody, and nauseous, which his pediatrician kept blaming on his ADHD and anxiety, even after multiple visits. Then it got worse. One day he was so exhausted and nauseous that another pediatrician at our clinic stepped in and sent us to the emergency room. It was like a scene from a medical drama: alarming blood tests, a quick transfer to the pediatric intensive care unit, and lots of medical jargon. Eventually, the doctors figured out that Connor had adrenal insufficiency, likely Addison’s disease. A rare disease in itself, but even rarer in children? Of course, it had to be our child. Did I mention this happened a week after the birth of Ellis, my fourth child? Insert something here about how God never puts more on us than we can handle, and so on.
Connor’s condition is treated with a cocktail of medications, steroids and school accommodations. The school nurse this year, Melinda, deserves a superhero cape for her role in Connor’s care. She gave him the confidence to explain his needs to teachers and classmates and made sure he had his emergency vaccination kit handy. By third grade, little Connor was already learning to advocate for himself, which was both a relief and a source of pride. Communication and empathy are still his best qualities. Personally, I believe he will make a great therapist one day.
Speaking of steroids, these aren’t the ones you pump up for a wrestling match. For Connor, they’re lifesavers. He needs them daily and extra doses when he’s sick or stressed. Fun fact: Stress doesn’t just mean a big test for Connor; it also means his body needs more steroids to cope. That means flu seasons and COVID are even more nerve-wracking than usual. It sounds crazy, but a simple cold can knock Connor out like the flu. A cough turns into a full-blown crisis that requires extra steroids to keep him out of the hospital. It’s exhausting for both of us. I’ve become that mom—the one who sends her kid to school with copious amounts of hand sanitizer and considers wrapping him in bubble wrap.
Anxiety is a constant companion in our household, too. It’s not just Connor’s anxiety, it’s mine too. PTSD from medical trauma is real for both of us. We’ve had to learn to recognize triggers and make plans to deal with them. Most days, I’m grateful for his diagnosis—it’s treatable, after all. But some days, it just sucks. It’s OK to admit that. We all have moments when we want to throw our hands up and say, “Why us?” But then we shake it off and move on, because that’s what parents do.
Despite these challenges, Connor is coping well with his illness. He is back in public school and thriving both academically and socially. His resilience amazes me every day. We have had to adapt, but we have also grown stronger as a family. Living with Addison’s disease is not easy, but it is our life and we are making the best of it.
If I’ve learned anything, it’s this: trust your instincts, forgive yourself, and ask for help. You know your child best. If something feels weird, push for answers. Addison’s disease and diabetes have very similar symptoms in children. I was convinced Connor had diabetes when we went to the emergency room that day. Because I had done my research and knew every symptom Connor had and when he had them, I directed the emergency room team to endocrinology and Addison’s disease. While we need to let qualified medical professionals do their job, you can arm yourself with information, especially if you’re not heard the first, second, or third time.
Forgive yourself for the inevitable mistakes. If your child has special needs, you will eventually make mistakes in your care. You will miss appointments. You will get impatient and frustrated with a child who literally cannot help how he or she feels, reacts, or behaves. You will try medications or methods that don’t work. The bottom line is that you love your child. You are doing the best you can. Forgive yourself, pour yourself a drink, and try again tomorrow.
Ask for help. I repeat, ASK FOR HELP. Don’t politely say you’ll let me know if you need anything and then quietly drown. And folks, I’m notorious for this. Swallow your pride or guilt and ask for the damn help.
So here we are, navigating life with Addison’s disease one day at a time. It’s a wild ride, but we’re in this together. And with a little humor, lots of love, and the support of our community, we’re getting through it just fine.
