Friday, March 30, 2012

Marfan Disney World

We just finished the first week back to school after spring break. My friend's Facebook accounts are filled with pictures of their fun vacations taken, and as I've been dreaming of someday being able to afford the trip to Florida or some other exciting place, the bills have come in for our yearly vacation to what I like to call Marfan Disney World.
So what is Marfan Disney World, you wonder? It's a place we visit for a day every February, the four of us trekking the 30 minute or so ride anxious for the days adventures. The whole time spent there is less than 4 hours, but the cost per child is about $750 dollars (this year). The money spent there wouldn't quite cover a week at the real Disney for us, but easily two years worth would.
Marfan Disney World isn't at all like the real theme park. You aren't guaranteed a fun time, and if it "rains" it's hard to remember the good parts of it. But if it's sunny, there isn't a better feeling as a parent than leaving it on a sunny day. On a sunny day, you get to let your guard down a little and just live for a few hours. You almost forget the list of cant's that come with marfan syndrome on the sunny days. You know the ones- the same ones that would make a ride on the roller coasters off limits at the real Disney World if we ever made it.
At Marfan Disney World, there aren't rides, but there is a movie, an incredible, mesmerizing movie, a movie of each of our children's hearts, that I watch each year in nervous anticipation, waiting to see what the results of what this movie tells us are, and wishing I knew how to read the measurements taken myself. So far, the kids are more interested in watching whatever cartoon or other show they can talk the technician into putting on the big screen, but us adults in the room barely notice that show.
The wait after that show for the main attraction is the longest wait of the year for Giraffedaddy and I. We sit in a exam room, reading stories to our children, offering silent prayers to our God that it's a sunny visit.
And then she arrives. She wears a business outfit covered by a lab coat, her stethoscope draped around her neck, her smile radiant as she greets the kids and us, regardless of the type of news she is going to deliver. There is no princess dresses involved here, but she's such a better role model for my girl anyways, and sometimes she shares that coveted stethoscope with the kids. There are no song and dance shows, no special princess teas, and instead of wearing a princess dress Giraffegirl gets to don a child size hospital gown, but she loves it just the same. She checks over each of our kids, listens to their hearts, and then it's time for what we've all been waiting for: The Big Discussion. On a simple white notepad with a picture of a detailed human heart in the background she jots down the measurements and the z-scores for the two kids.
We've been blessed so far. On our worst year Giraffeboy's aorta grew about .3 cm and his z-score topped off at about 2.83. To an untrained eye, these numbers mean nothing, and 3 millimeters seems like a nominal measurement, But if you factor in that a normal adult aorta is less than 3 cm, and that the kids were at around 2 cm when we started these measurements, suddenly millimeters matter. And the most simple way to define a z-score is to just say it is a standard deviation measurement that lets us know how far the kids are away from what a "normal" aorta size is for their height and weight. Anything less than 2 is considered in the normal range. We covet a number less than 2.
This year was the most sunny year yet. Giraffeboy's aorta stayed the same, and for the first time since we started these trips to Marfan Disney World 7 years ago, his z-score was just under 2. Praise God! And Giraffegirl's aorta stayed basically stable too, and her z-score was down from 2.39 to 2.3 this year. So we have so much to be grateful for. It was an exceptional visit this year.
We talk with the doctor a few more minutes and then were headed back home, our yearly trip over. Instead of souvenirs we leave with prescriptions for the coming year, our main weapon in combating aorta growth before next year's visit. We spend the rest of the day together as a family, have a rare meal at a restaurant, and we laugh and love. It's been a good day.
So as these bills come, and as I write the check out of our HSA account to pay for this year's trip, I reflect that somewhere, someone else had a rainy trip today, someone else had no need for the trip because their child died from this syndrome, and still someone else struggles to figure out how to pay this bill each year. And I dream of a day when this visit, a necessary part of a person with marfan syndrome's yearly physical, is covered by insurance. And I say a prayer of thanks to God for this year's sunny day. Some day I hope there is enough money in our budget to pay for the trip to the real Disney World, but for now I'm grateful that the money is there to pay for this trip. For now, it's enough to enjoy the real Disney World through the eyes of my friends, and to reflect on how lucky my family really is.


  1. Great analogy! We'll have our annual "Disney trip" in June.

    Btw: can I link to your blog on my Marfan blog roll?

    ~ Maya (Marf Mom)