State Fair

On the very last day of it being open, we made it to the Wisconsin State Fair!

Namine was very excited to go on a bunch of rides this year. But before I get into that, I want to talk about why going on amusement park rides is such a big deal for her.

Namine was born with several genetic defects, one of which is double-inlet left ventricle heart defect, or DILV for short. While a normal heart has four chambers, hers only has three: the muscle wall separating the bottom two chambers never fully formed. Complicating things further, the top two chambers are actually flipped.

There is no fixing a heart like Namine’s, but there are procedures to allow patients born with DILV to lead a relatively normal life. Namine has completed the three-surgery process of Norwood, Glenn, and Fontan; the last of these was in 2013. Her cardiologist sees her heart as healthy, and after five years, expects no complications anytime soon.

You know those signs they post outside of rides? “Pregnant women and those with heart conditions should not go on this ride”? For the longest time, we had to abide by those signs’ directions, and we had no reason to do otherwise. But Namine’s cardiologist has told us that for the children’s rides, she’s fine to go on them. It’s really up to her own discretion now — if she’s comfortable and tall enough, she can go on pretty much any ride she likes.

Well, that brings me to another point, actually. You see, DILV isn’t the only condition Namine was born with; she also has caudal regression syndrome, also sometimes called sacral agenesis, which is often shortened to CRS or CRS/SA. It’s a syndrome related to spina bifida, actually, and as such it affects, the spine, tailbone, legs, and feet. Namine uses a wheelchair, and most of these rides — scratch that, all of them, even the ones that say they’re accessible — require someone to help the wheelchair user in and out. So that’s where I come in.

Namine just turned 11, but she’s not too heavy for me to pick up and carry around. I am always happy to help her in and out of places she can’t transfer herself (although that’s not too often now, since she’s pretty self-reliant). While we were at the fair, I helped her in and out of each ride. I was happy to ride with her, too. (On some of those rides, she actually wouldn’t have been allowed to go by herself anyway, because she was too short.)

We did make it a point to save some of our fair tickets for playing a game or two. Namine won a stuffed giraffe.

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