One Big Family

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By Jillian Laumann, TTC Guest Blogger

Jillian photo 4My name is Jillian. I am 14 years old and I was diagnosed with hydrocephalus when I was born. I had my very first shunt put in when I was two weeks old. It lasted for three months. Then I had to have another surgery to replace the old one. I went to school like any other kid up to 5th grade. My whole elementary school experience was absolutely amazing. I met incredible people and, most importantly, didn’t have any shunt revisions.

On November 1, 2012, I had my first shunt revision in 12 years. I was always told that it is very rare for a shunt to last 12 years like mine did, so I felt very lucky. I was so nervous and scared about the surgery, though, because I didn’t know what was going to happen. After surgery, I was in pain but it wasn’t as bad as I thought it would be. Right then, I knew that for the rest of my life I would be able to deal with it.

When I entered the 6th grade, not only did my family move houses, I moved to a new school, which meant a whole new group of people. Right when I first stepped into the school I knew it was going to be a challenge. On the first day, everyone was staring at me because they didn’t recognize me, and because I was “weird” for having an illness. I got called names, pushed around, and even some of the teachers weren’t cooperating with and supportive of the whole situation.

ICP Monitor for hydrocephalusSince then I have had six shunt revisions and one shunt infection. I was in the hospital for about two weeks trying to clear everything up. After that awful experience in the hospital and going to a bad school, my parents decided to homeschool me. I have been homeschooled for about four months and absolutely love it. I also haven’t had a surgery since I started. Hydrocephalus is one tricky thing to deal with. I went to a Hydrocephalus Association WALK event and met some amazing people with my same issue. That meant a lot to me because right then I knew that I was not alone. I also learned that we are all one big family.

I am only 14. I still have a whole life ahead of me – high school, dating, work, college – and I know that there will be times when I may not get accepted for who I am. But I also know that the right people will love me for me. I know that with hydrocephalus I am going to have to go through many hard or awful experiences, but I will look back and say, “I did it,” and look ahead and say, “I CAN DO IT!”

Shunts break, we don’t.

3 Comments for : One Big Family
    • Victoria Conway
    • February 7, 2018
    Reply

    Wonderful to see how positive you are. I had my first shunt at 7 and then aged 14 it was revised. I was bullied because I was different but it’s made me stronger. I thought I was invincible as that shunt lasted for 32 years! Alas it was revised 18 months ago but things are settling down again.
    I take every day as a gift and feel so lucky to have been fixed again.
    Good luck on your journey.

      • Siuha
      • February 7, 2018
      Reply

      Hi just curious why people bullied you because you were different. The shunt is normally hidden under the hair. I thought it’s hard to see?

    • Dean
    • February 8, 2016
    Reply

    So glad you’re going along well after all those challenges. Its an individual journey for each of us. I’m 34 and have had a few shunts in that time. I also served 15 years as a volunteer firefighter and I’ve been riding horses for 10. Go out there and do what you love and have fun. Thanks for sharing your story

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