As any parent knows, raising kids is a wild ride, complete with unexpected twists, turns, and occasional pit stops at the ER. For me, the journey took a particularly sharp 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 – neither had we. In fact, Addison’s sounds more like a fancy restaurant than a rare condition where the adrenal glands don’t produce enough hormones. But trust me, there’s nothing fancy about it.
It all started with Connor not being himself. He was lethargic, moody, and nauseous, which, even after several visits, his primary pediatrician kept chalking up to his ADHD and anxiety. Then things got worse. One day, he was so fatigued and nauseous that another pediatrician in our clinic stepped in and sent us to the ER. It was like a scene from a medical drama: alarming blood tests, a rapid transfer to the children’s ICU, and a lot of medical jargon. Eventually, the doctors figured out that Connor had adrenal insufficiency, likely Addison’s disease. A rare disease in itself, but even more rare in children? Of course, it had to be our kid. Did I mention this was a week after Ellis, my fourth child, was born? Insert something here about God never giving us more than we can handle and whatnot.
Managing Connor’s condition involves a cocktail of medications, steroids, and school accommodations. The school nurse that 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 ensured he had his emergency injection kit handy. In just third Grade, tiny Connor learned to advocate for himself, which was both a relief and a source of pride. Communication and empathy are still his best qualities. Personally, I think he’ll make a great therapist one day.
Speaking of steroids, these aren’t the kind that bulk you up for a wrestling match. They’re lifesavers for Connor. He needs them daily and extra doses when he’s sick or stressed. Fun fact: stress for Connor doesn’t just mean a big test; it also means his body needs more steroids to cope. This means flu seasons and COVID are even more nerve-wracking than usual. It feels crazy, but a simple cold can knock Connor out like the flu. A cough turns into a full-blown crisis, requiring 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 hand sanitizer in bulk and considers wrapping him in bubble wrap.
Anxiety is also a constant companion in our household. 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 cope. Most days, I’m grateful for his diagnosis – it’s treatable, after all. But some days, it just sucks. It’s okay to admit that. We all have moments where we want to throw our hands up and say, “Why us?” But then we dust ourselves off and keep going, because that’s what parents do.
Despite the challenges, Connor is managing his condition well. He’s back in public school, thriving academically and socially. His resilience amazes me every day. We’ve had to adapt, but we’ve also grown stronger as a family. Life with Addison’s isn’t easy, but it’s our life, and we’re 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 kid best. If something feels off, push for answers. Addison’s disease and diabetes have very similar symptoms in children. I was convinced Connor had diabetes when we got to the ER that day. Because I had done my research and knew every symptom Connor had and when he was having it, I led the ER team down the path of endocrinology and Addison’s. While we still need to let qualified medical professionals do their jobs, you can arm yourself with information, especially when you aren’t being heard the first, second, or third time.
Forgive yourself for the inevitable mistakes. If your kid has special needs, at some point, while facilitating their care, you’re going to mess up. You’re going to miss appointments. You’re going to get impatient and frustrated with a kid who literally can’t help how they feel or react or behave. You’re going to try some meds or methods that won’t work. Bottom line, you love your kid. You’re doing your best. Forgive yourself, pour a drink, and try again tomorrow.
Ask for help. I’ll repeat this: ASK FOR HELP. Don’t politely say you’ll let people know if you need anything and then quietly drown. And y’all, I am notorious for this. Swallow your pride or your guilt and ask for the dang 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 it together. And with a little humor, a lot of love, and the support of our community, we’re making it through just fine.
