Going into a room 10-15 times a day and seeing a baby or toddler is the greatest feeling. Even if you spend the entire time talking to the parents, just being in the presence of something that cute is incredible. If you don’t believe me, imagine walking into a room with a puppy staring at you and doing weird shit. Now imagine doing that over and over again. And while you examine the kid (or puppy) you pretend you’re playing a game where the reflex hammer is a “boop” and your vibrating tuning fork is a “buzz.” And they giggle and dance with you, and all the while you’re checking their cranial nerves through their smiles and their strength through hopping with them. It’s literally magical.
Not only are tiny humans hilarious and unintentionally odd, but they’ve also taught me a lot about resilience. CHLA is a super specialized hospital, where all of the “zebra” cases that are tough to figure out and even harder to treat go. Kids with rare diseases that you read about in textbooks come here in droves to receive care from some of the smartest pediatricians in the country. And since I’m on neurology, that means that I see children with extremely heartbreaking metabolic, degenerative, and in essence incurable illnesses. Kids, who through no fault of their own, were born with things like seizures, paralysis, tumors, and developmental delays all in one because of some stupid genetic mutation on one stupid gene out of thousands and thousands. And the number of strokes I’ve seen in kids ranging from 2-13 years old is unreal. I never knew a child could have a stroke and in the past two weeks I’ve seen 6 of them.
Each time I ask the attending about what their lives will be like as adults, his face turns grim because it’s tough to predict, but for now, the children appear to be happy. They’re just kids who also have diseases.
They remind me of the kids I see at The Painted Turtle, a summer camp for kids with chronic illnesses that I volunteer at. There are kids with liver and kidney disease that takes dozens of pills a day and desperately need transplants, those with hemophilia who run to the risk of bleeding to death from a simple fall every single day, and children with skeletal dysplasia whose short stature makes them feel different from everyone around them, and yet if you spend time with them you realize that they’re all just normal kids. They’re children that happen to have illnesses, but they’ve found a way to adapt. They play with the same toys as kids without diseases, they enjoy the same movies and music, and they have tons of friends that don’t necessarily have chronic illnesses like them. Don’t get me wrong, their life comes with a set of unrivaled challenges compared to most of us, but for the most part they try their best to live regular lives.
One of the kids at The Painted Turtle, a 11 year old boy that was born without kidneys, told me that people constantly ask him if he wished he were ‘normal’. And this little boy, who undergoes dialysis for 12 hours every night and will need multiple transplants over his lifetime to survive, replied “I tell them no. Don’t get me wrong, sometimes I wish I didn’t have to deal with dialysis and the pills, but to be honest if I didn’t have this disease then I wouldn’t be the person I am today.” If you think about how selfless and courageous that statement is, it’ll hit you right in the feels.
I know I’m digressing a little from my experience on Peds Neuro, but being at the hospital has made me think about all of the kids I’ve met with serious diseases or situations. Whether it’s children at Wema, who lost their parents from AIDS or violence, or kids with illnesses with little hope for a permanent cure. This is their normal now and they’re not going to let it screw up their chance to have a childhood. As an adult, I’m guilty of sweating the small things and getting worked up if something in my life is thrown a little off balance. These kids have their whole lives turned upside down and they still manage to smile and jump and play with my reflex hammer with me. And working with them over the last few weeks has reminded me to do the same.