Was it to help calm me down? Didn't they get that I didn't want to feel like this all the time? I would try to ignore the comments, shrug them off, laugh back, but deep down the anger and sadness, the shame built up. I couldn't quite understand why they needed to say what they said. But so many people didn't understand the anxiety I felt worrying that if she fell or got hurt, or caught a bug or virus, that she would end up in the hospital or worse.Įach comment or “joke” from someone I cared about was like a knife stabbing me. So many people would comment on how I needed to let our kids just be - relax a little, germs build up immunity let them get hurt, that's how they learn - fall down and get back up again. If I wasn't a helicopter mom before, I was now. They willingly came, eager to support us, but apprehensive about the procedures. We have four children and knew that we needed our tribe to get trained - if my husband and I needed to leave or even just go out together, those staying with our children needed to know what to do if a crisis were to happen. We made an appointment to bring back family and friends to be trained to give injections and how to recognize when she would need them. We learned right there that day how to give emergency injections in case her body went into crisis. Our amazing endocrinologist took his time, calmly, patiently telling us what AI was, why she was diagnosed, and what we could expect. Hours of treatments, doctor appointments, her laugh was contagious - still is. And yet, she was still the happiest baby. Angry, sad, scared … My husband and I were doing everything we were supposed to do, but the diagnoses kept coming. Why, why, why?ĭistraught wasn't the word. How could this happen? Was it the steroids she had been on for the colds, for her lungs, for her CF? Why was this happening? Why did this keep happening? First the CF, then the dysphagia, the failure to thrive. Basically, her fight-or-flight mechanism was affected, so if she got sick or physically hurt, her body didn't have enough cortisol to go into fight mode, and she would not be able to protect herself. It's a life-threatening condition that requires special training and emergency medications. Bright and early the next morning, with bags under my eyes and my husband, George, by my side, we heard the words for the first time - adrenal insufficiency (AI) - the inability of the adrenal glands to produce cortisol.

Adrenal problems