I just thought tonight was going to be like every other Wednesday night; Hump Day, the seemingly longest day of the week. Little did I know it would be the best night, in my entire life so far. Tonight I got to witness the TRUE reason I do PeerWise; that lightbulb moment. Peer Wise is a program run by Lurie Children's Hospital. It's where patients and their parents, are "mentor volunteers" for kids with either the same illness as they have, or an illness that's similar. And I knew it was going to be rewarding, but I wasn't sure how. I had honestly spent the past 2 months mostly walking the halls, because I was too shy to just burst into someone's room and tell them I was a PeerWise volunteer. Even kids with the same diagnosis. It was just very intimidating. I thought of the way I was when I was a patient, and I thought to myself, "honestly, whenever a volunteer came to your room, you basically said thanks but no thanks. But I wanted to make a difference for these kids. The kind of difference that I didn't have. So today, I got to Lurie at about 5:30. My coordinator Amy(all names changed for privacy reasons) told me to call her after I got there just to check in, make sure I got my census, and everything. And I called her and she asked me if I could come to room 18-107. She was doing a PeerWise Training session, and wanted me to answer any questions they had.
After visiting a little buddy I’ve made on the neurosurgery floor, I went into a baby’s room. She was very young. Maybe 8 weeks old? And so obviously I was going to talk to her parents. I walked into the room and typically as you are an unknown person walking into a child’s room, (it doesn’t really matter that you have the vest on, people don’t really notice it I’ve found haha) I told her parents, “My name is Kimi, and I’m a volunteer at Lurie, I actually do a special kind of volunteering called PeerWise. And I’m here because I have your daughter’s same diagnosis.” Both of their eyes got really wide at the same time. It actually sort of freaked me out at first. The mom gasped, she told me how her daughter was diagnosed; that she had gotten meningitis, I said so did I. She said that she had gotten her first shunt now when she was 2 months old, I said so did I. And then the mom’s eyes got really watery, and I felt really bad, I started thinking, “OMG is this too much for them? Are they overloaded with like 20000 things right now? Maybe I should come back later?” Then all my thoughts flew out the window when she said, “Um I’m sorry if this sounds weird, but can I give you a hug? We’ve been waiting for a person like you to come in here. We were so scared, we had never heard of hydrocephalus before, and we felt like we were all alone; you can talk to the dr’s and nurses about it but they just tell you all of the physical stuff about it, never the emotional baggage. And then they asked me like 1000 questions. One of which is how are you doing now? I said I’m doing great, but the first thing you need to realize with hydrocephalus kids, is hydrocephalus is very much a snowflake illness, meaning every child with it is different. I could tell you everything I’ve been through in my entire life which I”ll spare you because it’s a lot, but your daughter may not go through any of it. And then they told me, “The doctors said her shunt only has an average lifespan of 2 years. How long did yours last?” I told them I had gotten a lot of revisions in the past 12 years, but my first shunt that I received when I got to America lasted me 14 years. Then they started crying again. Another question that the dad had was were you in main stream school? And I told him I went to Catholic grade school, was in the National Junior Honors Society, went to College Prep High School, got 2nd, 1st and Loyola Scholar honors all the way through, and then went to a university and received a Bachelor’s degree. Another question that they really wanted to know the answer to was how was my childhood? I told them my childhood was absolutely wonderful! I never thought about the fact that I was sick, I never really noticed that I was different from anyone else, I almost never noticed the fact that I had a bump on my head. I was just a typical kid, which I was unbelievably thankful for.
At the end of our conversation the dad said, “So you’re everything our daughter can be? And I said, “Yes sir I am. Nothing will stand in her way but herself. And never let her think differently. My parents never let me thing I was any different than any of my peers. She may have to go about things differently, but there are a thousand ways to get there, it doesn’t really matter in the end does it?” At the end of our conversation, the mom asked me a question; she said, “I don’t want to sound weird, but can I touch your shunt?” And I’ll be honest, at first I thought, “Oh geez, I’ve never been asked that before, but then, I was thinking, well I can’t feel it anyway, so whatever if it makes her happy just let her touch it lol. And so I did, and then of course she started crying, she put her hand over her mouth and said, “OMG this is what our daughter has in her head?!”
I can’t believe after that happened to me last night that I was thinking of not going. Now I know what my purpose is. This is just as rewarding as nursing, and maybe even more, because you don’t need to talk about all the percentages, and odds, all you need to do is be there. And it doesn’t matter what you went through, or how bad it was. The fact that you know on a personal level what they went through means the world to them. And I’m so glad I didn’t cancel last night! I made friends that I will keep for a lifetime!