The best piece of advice I've received in the past month came from our pediatrician's office. “Press four,” the nurse said as she was explaining why their office couldn't help me. “If you press four, you will get a live person.” She was talking about the automated phone system at our neurologist's office and I have to admit that at first, I had my doubts that it would actually work. But, it does.
In the past three weeks, I've pressed four at least thirty times (maybe more, I've lost count). Before I found out the magic of four, I'd sit on hold for a half hour or leave a message on an automated system (and then pray that I'd get a call back). Now? I just press four and every time I get a real live person who actually listens to the concerns I have for my child.
It's interesting. Until you graduate to your child having a chronic health condition, you don't get bad care, you just don't get super, duper exceptional care. You have to wait for answers. But, now after a couple of hospital visits and those thirty or so phone calls, we've now moved up the migraine food chain. We were actually able this week to get into our doctor and have some options presented to us that were more than just a cocktail of medications. (Of course, I should also confess that we got into the doctor because of my persistence. I absolutely refused to get off the phone until they agreed to help me. As Mama's we're the best advocates for our kids).
We also were introduced to a social worker that will help us communicate with school and explore all our options moving forward. This was an incredible relief for me. It's so stressful to call school every week to report my child absent and then coordinate the make-up work. School has been very accommodating but I have to confess that there are times that I wonder if they think we're making this all up (it was very liberating to hear the neurologist say this week that headaches are the #1 reason that kids become disabled and that schools need to be educated better to deal with kids like mine). Up to now, I've done the best I can but it's great to know I will have someone else in my corner.
We have four days of school left. As of now, I'm not sure if we'll get the headaches under control to get her there. Our middle school has gone out of their way to make sure that we finish this year without stress or pressure and I have to thank them for that. We've already had a conversation about accommodations for next year as our neurologist wants to keep Rosie in public school (I've been leaning towards homeschooling). We'll see how that goes.
Right now, I just want it to be Summer. No school. No pressure. I think that's what's going to help my Rosebud get these headaches under control. And, if they continue, at least I know the magical secret to get the help we need- Press four.