What is it like to be the mother of a medically complex, medically fragile, chronically ill child?

What is it like to be the mother of a medically complex, medically fragile, chronically ill child? So many hours. So much talking. Discussing. Troubleshooting. Banging our heads against a wall. No answers. Wait and see. I don't know. Maybe it's just her. Have we done this? We know that doesn't work. Let's try this next. Oh, that triggers seizures. This one might make it worse. This one works with most but Lily isn't like most so...Ugh, the pesky seizures. You need to go to neuro for this. You know that. I wonder if I write it down for neuro. Meds are needed. She has to sleep. You need sleep. Don't forget Urology. And back to genetics because getting those EDS labs might help us. But probably not. I get it...your broke. Let's do this then. It's arthritis. It's EDS. It's fever related. Maybe... It's who the hell knows anymore. Swollen eyes? Pain in her chest? This is swollen and that has fluid on it. MRI. Up the chemo yet again. Did you know your appendix can be chronically inflammed? She is unique. Rare. We both know what that means. Until someone cares there will be no cures. Or treatments that work for her. We just try to use all the tools in our box. Call the lab to make sure Mr. Rod is there. He is her favorite lab guy at the clinic. He sings under his breath and tells her exactly what he is doing. Defeated. Exhausted. Next time you doubt the chair just come to a clinic appointment. PT and OT. Orders to continue even once she meets her goals. Ongoing means ongoing. AFOs. Nothing less. Listen to mom. She really does know best. Lily shouldn't be this way. We know this. But she is. Can we move on now? Accept it and do what the doctor says. Brace it. Keep her cool. Not cold because that triggers a flare. Another flare. Wait, why is her temp only 96? She confuses even the best of the best. Chronically ill. Chronically stressed. Just want peace of mind. Just want a doctor to say "this is what it is, this is how to fix it". She is a fighter. A warrior. Even at 6. She inspires. She educates. She proves you wrong. Does nothing by the text. Outside the box. Actually the box crumbled long ago. It couldn't hold up to her. Her spirit matches no other. Her smiles prove her strength. She knows no different life, no different fate. Being her mom brings out the best and worst of me. I feel powerless yet powerful. I know defeat but I know triumph. I know pain but I know healing. I know sadness but I know delight. What is it like to be the mother of a medically complex, medically fragile, chronically ill child? Never boring that is for sure!