It seems like all I have done this week is go to the doctor. Correction specialists. Many many many specialists.
I remember when I was a teacher and had to sit down to that dreaded conference. The one where you tell mom and dad that something is not right with their child. That you are not a diagnostician, but you see stuff that isn't normal. You have the Kleenex, the water, and your staff with you. It is a hard conference to give. I hurt with the parents. This week I gained another new perspective. I WAS the parent. The doctors had Kleenex, water, and just the right words, but it still was hard.
I learned new phrases. Spasticity, epileptic risk, Pulmonary BPD, nystagmus, and many other big words. Words that I am lucky to say or spell right. I wrote them down and am now working on understanding them.
But there were other things I learned to. I learned that VCU cares about me as much as my daughter, They asked me how I was, offered support, strenght, and most of all hope. They answered my questions, listened to my concerns, and assured me that I was on the right track. I learned that my friend Heidi will drop everything just to come to appointments with me so I don't have to be alone.
Most of all I learned that I am Cary's parent. That a specialist may tell me something, but I may get a better result doing things my way. I had forgotten that for a while. I thought that if I wasn't doing it their way that somehow my daughter would slip into a great abyss. Well, about half way through last week I realized that I do have a little experience in early childhood and a lick of common sense so I started trying some new stuff. Guess what? Cary is still ticking:). In fact, she is doing better my way. So now I ask more questions. I want a rationale for doing it their way. Lets just say that some people don't like that. Most do, but you get a few stubborn ones along the way. But even they grudgingly admit that with 105% gain from the hospital that I must be doing something right.
So today we are resting. Cary's lungs are great, her neuro skills are delayed but within spectrum tolerance (that means she is slow but working to catch up), and her sodium levels are stable but that changes day to day. Tomorrow I battle with endocrine on her diet. I want her to be off of her nasal tube as she has discovered she can pull it out and we need to come up with a solution to how much she eats to keep her DI regulated but not so much that she becomes sick. Every visit sharpens my mind for battle of Cary's best interests.
After all at the end of the day I am the one who takes her home, not the specialists. I am her voice and her advocate. I am her mother.