How Hydro Affected my Childhood

When I was growing up, I often didn't tell my friends that I have hydrocephalus.  Now as an adult I pretty much shout if from the rooftops.  But as a kid I was so worried about what my peers would think of me.  Maybe they would think I was strange or start treating me different.

The only time I told people was when I was hospitalized with a revision and would miss weeks of school.  When I was in elementary school the kids couldn't understand the condition very well. Even my 7 year old son who deals with it on a daily basis doesn't understand the extent of it. I had two revisions in kindergarten and my teacher had the entire class make me huge get well cards.  In case anyone from my kindergarten class is reading this I still have those cards and still appreciate them to this day.

By the time I got to junior high, the kids had a little more understanding and compassion for what I was going through.  Some of them even started asking me questions about it.  Luckily I never did need a revision in high school.  Just one in the short amount of time that I went to college but no one in my classes even noticed my absence.  I have been having surgery pretty regularly ever since.

Besides having a fear of talking about my condition, I did struggle a little in school.  I was only a C average student.  I often had trouble remembering subject matter and did poorly on tests because of it.  Of course when I was having a shunt failure my grades dropped even more but I always had an opportunity to make up the work.  Also I really struggled with learning how to write in cursive and it's still horrible to this day.  School made me realize I am not a visual learner because I can't remember what I read.  I learn by doing.  I used to make a lot of mistakes and it got worse when I started working.  I didn't really tell anyone about my struggles with learning because I thought I was dumb and was embarrassed.  It wasn't until I got older that I realized that I am not dumb.  I just have a brain injury.

My  pediatric neurosurgeon always told me not to play contact sports and I was always taken out of physical education for months after a surgery.  So I never joined any sports or anything like that.  I was also so shy that I didn't really join any clubs either.  I never enjoyed being a student so I basically just did what I needed to do to get by.

As a child I did play with all the neighborhood kids like a normal child would.  I just had some limitations, suffered bad headaches, and spent more time in hospitals then most of my peers.  But it was hard growing up feeling like I was the only person with this condition.  I wish they had support groups and hydrocephalus walks back then..

I used to have horrific nightmares growing up.  The nightmares were so bad and vivid that sometimes I dreaded going to sleep.  They got a little better as I became an adult.  I think the nightmares started because I was afraid to stay over-night at the hospital and multiple brain surgeries for a child is traumatic.

I survived childhood and had no idea that becoming an adult would be worse than I ever imagined...