You know when you start shopping for Christmas in September and you have convinced yourself that you have it all together and it is going to be like, the best holiday ever? And then you find yourself at Wal-Mart crying in the aisles on December 23, thinking, "How. Did. This. Happen?" There is such thing as too much time to prepare. You can't pack your toothbrush a week before you leave. Some things have to be figured out in the moment or even after. For a person who is desperately trying to grasp the illusion of some sort of control in this chaotic time, waiting is not a possibility.
So, what have I been doing to "get ready" for Luke's pre brain surgery adventure. Well, yesterday, for example, I called the financial counselor at Texas Children's Hospital to discuss prior authorizations and Medicaid choices. Her annoyance with my questions was beyond apparent. So, I apologized for bothering her on a Friday afternoon and getting on her nerves with my obvious ignorance of the topic at hand and explained that I just needed help to understand this intricate process. You see, I have a small case of Post Traumatic Insurance Screw-Up from Luke's last brain surgery when the hospital lost paperwork and we ended up with some surprise bills. (Does anyone else HATE the word suRprise. WHAT is that 'r' doing. I mean, I know there are two in the word. But I have no beef with the second. It makes sense. I'm cool with it, but that first 'r' gets me every time.) So, anyway, my trust is a little shaky in the billing department. She assured me that she and the insurance companies would take care of it and that "parents don't normally get involved in these authorizations". Well, maybe not most parents, but unfortunately, Patanya, I have your direct line now. I am going to be versed in writing prior auths (thats what we call it in the insurance business) by the end of this, with your help.
So, this is what happens when you book my child for a pre-surgery appointment three months in advance. I'm going to be all up in it, sister.
In my defense, it is genetic. Mom has multiple contacts at the hotel. She has a wheelchair accessible shuttle coming to pick us up from the airport. And she is now best friends with the special needs flight coordinator, Kim, at United. They shared stories of their grandkids and cried together for 35 minutes.
I know there are innocent bystanders in my wake, but it feels good to fill this stagnant, painful waiting with some 'doing' and some 'sharing'. If we are going to fly across the country, or at least to the bottom of it, I want to know, maybe like, or possibly even trust the people who are going to be a part of his brain surgery. Right now, I am just in the business to force those who have to be involved, to care about my son just a liiiittle bit more than everyone else. I want them to work just a liiiittle harder for him. I want them to be just a liiiitle more precise/ thoughtful/ careful/ patient. What else are you supposed to do when you lift it up? When you hand it over to the best doctors in the world? Sit there and wait.... I am pretty sure God delegated this task to me. I'm pretty sure he is cool with me doing this part for him. My principal, at the school I teach, always says, "When we all do a little, no one has to do a lot." Just helping out down here.
These people go to work everyday. They do their job. The answer calls of crazy parents. They take blood from screaming kids. They handle baggage of tired, traveling families. I want them to know our story. I want them to fall in love with Luke I want them to stop and notice his angel wings. I want them to care.
We know what it feels like to get in the zone of our jobs. We know the people who make our jobs feel like work and we know the people who remind us why we started doing whatever it is we do in the first place. I want Luke to be the boy that these people talk about at the dinner table with their family. The little boy who can't talk, but speaks to you. When I think about us getting on that plane, I visualize the map of the US. As the plane crosses the midwest into the great plains, a stream of pixie dust scatters across this great nation as Luke flies above it, touching all those in his path. Too much? Nah.
We leave for Houston on September 28. We will be admitted to the hospital the next morning where they will start this 3 day EEG. I am very anxious about what this will find. Luke has not been doing well as of late. He has run a fever, he hasn't been sleeping (God bless my parents), he has vomited, he has continued his subtle seizure activity, he has cried... a lot. As I type, I am becoming very anxious. I know there is more going on that we can't see with Luke's brain. The child can't stand anymore. He can't find his mouth to put the bottle into (I'm pretty sure it is supposed to say, "in which to put the bottle", but I just can't with that grammar yet). What I am more nervous about is what they may not find. What if.... No. No. I am not going to do this. When I start to 'go there' in my mind, I shake my head like an Etch-a-sketch. (HIT RESET: Faith. Trust. Breathe... Repeat) So, anywhoo, we will be in the hospital until the collect as many seizures as they need. They have us booked for 3 days, but we may be discharged sooner. And then we will commute from the hotel (it is literally across the street, quit being dramatic, Steph) to the hospital for the remainder of his appointments and tests.
I guess the main question I keep getting (mostly over and over again from my mom) would be, "Is there a chance they can just keep us down there based on what they see and just do the surgery while we are there?" No. They are going to collect as much data as they can from Luke's tests and then sit down as a team and discuss the plan. I, personally, appreciate the thoughtfulness and collaboration behind determining which portion of Luke's brain to remove. I mean, come on, we have at least 7 teachers meetings every single year to prepare, discuss, and review how we will hand out and collect the testing materials for our state's standardized test. So I think I handle these doctors wanting to have a few extra meetings before they open up Luke's precious head.
It is incredibly painful to wait. Lucky for me, waiting is not something I do. I've got a story to share and pixie dust to spread.
Mother of two amazing little boys, one who just happens to be a TS warrior.