Allegro Media Group

Changing the Universe

So, were my letters to myself vague enough for ya? Vague though they were I think that would have been exactly what I would have wanted to hear in those various stages in life.

In one of those letters, I mentioned that something scary happened to my sister, but I turned that knowledge I gained from that and turned it into a career. Joanna commented that she wanted to hear the story, so I think it’s about time that I do.

When I was in 8th grade, my youngest sister, Emmi, was in 1st grade. We started noticing very subtle changes in her. She was getting neck aches, headaches, and the weirdest thing: she couldn’t sit up straight any more. We’d be at the dinner table and she would be at her seat leaning slightly to the side. My parents would tell her to sit up straight, and she’s reply “but I am!”

My parents took her to our family doctor and they thought whatever she had could be a virus or something, but basically, they were told it was no big deal. So we headed off to Disney World that February.

And that’s when things got REALLY weird. She started blacking out. Passing out. Wetting herself. She rolled off the side of the bed in the hotel one afternoon and didn’t know how she got there. Her motor skills were so bad that she couldn’t hold my parents’ hand as we walked through the parks. They actually had to hold her upper arm really tightly because even though she thought she was walking straight, she was actually walking at a severe angle. This would have been one of those times where having a child leash would have been really helpful for my parents. There is a photo of the three of us kids where Emmi is leaning to the side and her eyes look kinda, well, off. My mom can’t even stand looking at that photo.

We got back home and my parents took Emmi to a new family doctor. After doing a basic exam, she asked Emmi to do a simple task. She had to touch each one of the tips of her fingers to her thumb. She couldn’t do it. Instantly the doctor said that she was concerned that there was an issue with her brain and told them to head to the hospital for a scan immediately.

What they found was no less than really freaking scary. Looking at those scans now is still amazing to me. There were big black holes where brain matter was supposed to be. The diagnosis: hydrocephalus

Here’s the way it was explained to 13 year old me: There are ventricles in your brain that contain fluid. These each have drainage tubes. Emmi’s drainage tubes were defective, so her fluid wasn’t draining the way it was supposed to. It had built up over time and had started pushing her brain up against her skull, which explained all the strange behavior.

The fix? A shunt. It’s basically a catheter inserted into her ventricles with a tube that runs out of her brain, down her neck, and into her stomach. That keeps the ventricles sufficiently drained.

The surgery went well, thank God. She was back to school soon enough and was able to finish out the year. But here’s the weird part. Hydrocephalus doesn’t just “show up.” If you have it, it means you were born with it. It’s a complication that is either discovered at birth or else something traumatic happened to cause it.

So what caused it??

I don’t know how long after this we found out why it happened. Once the swelling in her brain went down, another scan showed us why it happened to begin with. Her neurologist discovered a tumor on her brain stem. Tectal Glioma . According to what I’ve read, these tumors just kind of come up out of no where. And because it’s located on her brain stem (which controls all of your functions to live like breathing and heart rate) it isn’t in an area that can be easily operated on without leaving her with some kind of permanent effect.

So for now, the tumor stays. And as long as it doesn’t grow, it’s fine where it is. She gets yearly MRIs to check it to make sure it stays the size that it is.

Ok, so how does this tie into what I do now? Well, from the swelling of the ventricles which essentially squished her brain, Emmi was left with a brain injury. She’s had some neurological testing done which shows she has executive dysfunction (which affects her auditory processing, her processing speed, planning, sequencing, attention to detail, etc.) and her fine motor skills were affected.

For her, this means that it takes her longer to understand information. Test taking is hard for her and she has to take her tests untimed or time and a half. Her organizational skills are affected too. It’s difficult for her to organize things she has to do and then complete them. Reading is hard, too. She can’t just read a book and expect to get anything out of it. She needs her books on tape so she can read AND hear what she’s reading at the same time. Her fine motor skills are affected too. It’s hard for her to write with a pen/pencil because of the fine detail that you need to have to write. She takes her notes with her computer because it’s faster for her to type information than it is to take the time and concentration it takes her to write her notes.

But if you met the girl, you’d have no idea. She’s seriously one of the most intelligent people I know. We can talk about religion, politics, our anger at BP , or whatever. The only time I’m reminded of her disability is when we are having a conversation like that and a dog then walks by and she’s distracted and starts going on and on about how cute that dog is and how that’s the kind of dog that she wants and aren’t doggies cute and when she grows up she wants to live on a farm and have horsies and instead of having kids she wants dogs and do you think she could have a monkey on her farm or would the horsies trample the monkey? See what I mean?

Ok, so for me, I took a fascination with her. Well, maybe not HER per se, but her disability. I majored in psychology in school and ended up working at a company that provides services to individuals with brain injuries. The more I learned at this job, the more I learned about Emmi, and vice versa. I’ve become really fascinated by how the brain works and how it can be affected by something as simple as a concussion. I’ve studied the different areas of the brain and how they work and how they can be affected by car accidents or, like in Emmi’s case, a brain tumor. I was even studying to become a Certified Brain Injury Specialist, but I was 8 1/2 months pregnant and I just couldn’t do it at that time. I’m going to do it again this fall, however.

I think I’m going to be one of those mothers that INSISTS on my children wearing a helmet at all times while doing anything, biking, rollerblading, sports, whatever! I take concussions very, VERY seriously. Did you know that the brain of a professional defensive lineman at the time of retirement (around 35) looks like the brain of a 75 year old with Alzheimer’s? Even wide receivers without a history of ever having a concussion can have Alzheimer’s looking brains .

Brain injuries are something that we are just now starting to realize is more and more of a big deal. As the founder of our company always says “It could happen to you.” This was before she suffered a ruptured brain aneurysm and almost died, coming out of it with her very own brain injury.

Emmi was extremely lucky. I thank God regularly that she is still here with us without any severe lingering effects. But because of what we went through with her, I’ve developed a passion for working with others who are worse off than her, but who suffer from the same issues.

This passion has extended further, as well. I’ve been extremely moved by Keegan’s story and by Joanna’s  fund-raising to help his family pay for some of his medical needs. Today is the last day to donate to Keegan’s fund to be entered to win some fabulous prizes. But we will be continuing to collect any donations. Even $5 can go a long way to help the Chupps. Please consider heading over to Raising Madison to donate. Or just click the Donate button at the top of this page to go right to the paypal donation site. Just $5 can help a family who needs our help right now. And thank you, from the bottom my heart, for helping us!

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