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When I Decided to Explain My Hydrocephalus to a Group of Young Girls

After recently learning that hydrocephalus is a statistically documented condition, I’m thankful I now have the appropriate words to explain this condition to those around me. Even then, it’s easier to explain this to close friends who I know well enough to trust they will react to this piece of news sensitively.

But this doesn’t eliminate the challenge of explaining hydrocephalus to young children. Yet, in a moment of spontaneity, I had the blessing and privilege of sharing this with a group of 7- to 9-year-olds I dearly love. They amazed me with all their love, courage and acceptance. This is our story.

I was in church on a September afternoon last year, chatting with the group of girls I teach for a children’s program. Midway through the conversation, A piped up to say, “Dora jiejie, you know my 6-week-old baby cousin is going for a surgery next week.” (Jiejie means “older sister” in Mandarin Chinese and is often used affectionately to refer to elder, unmarried friends in the Chinese community.)

My eyes widen. “So are you scared?” I ask her.

“No, I’m not! But then we must pray that Jesus will watch over her and her family because she’s so small and such a poor thing!” A said cheerfully and confidently, her strong faith shining through.

I smiled at her. Knowing that pediatric surgery can be a scary topic for the majority of children, I asked the girls if they had stayed in the hospital or had surgery before. One or two of them nodded and said they had experienced this as infants, but they didn’t have memories of it anymore because they were very young at the time.

My heart skipped a beat. I realized this was the perfect opportunity to educate them about my hydrocephalus, but I was also slightly worried they might not be able to handle the news. Would this give them an opportunity to tease me? What if they don’t understand? But I decided to try anyway. This shall be the prelude before I eventually tell them about my anxiety disorder, I told myself.

So I told them that like A’s baby cousin, I had surgery as a baby, too. I was also too young to remember it. I explained that when I was born there was too much water (cerebrospinal fluid) in my brain, which made me walk a little differently from most people. The doctors put in a tube (or shunt) to drain it out, so I can do things like attend school and hold a job.

As long as I have the shunt, I’ll be OK, I assured them. They were wide-eyed and were listening intently. Then C broke the momentary silence and asked, “Is it like drinking water?” I was amused at the connection she drew. I shrugged with a smile and told her I wasn’t too sure, but that they could touch my shunt if they liked. Since this was the first time I attempted to explain hydrocephalus to children, I decided they might feel less alienated if they had the opportunity to be engaged with it, especially when it can appear to be a big, scary, medical thing.

They took up my offer and delicately stroked my shunt several times as if it would crumble if they were any less careful. In my insecurity, I ended up asking them if we were still friends even after they found this out about me. They nodded and made pinky promises with me, which was incredibly reassuring, especially when I think about their childlike acceptance.

My heart smiled because I knew these girls understood things well, and I continued to hope these would be the first seeds of empathy I have sowed into their hearts and that they might grow up to be compassionate and empathetic young adults in time to come.

The Mighty is asking the following: How would you describe your disability, disease or mental illness to a child? If you’ve done this before, tell us about that moment and the child’s reaction. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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