Original story by Josiah Velasquez, 5th Grade, KIPP Academy Middle School
This story originally appeared in Legend, KIPP NYC’s student literary magazine.
Imagine not being able to smile, frown, or even eat, and yet doctors cannot understand or explain what is happening. What will you do? Will you scream, run, or cry? When my brother was born, he had many complications and had to face so many procedures and surgeries, but we faced it together.
When I first saw my brother, I immediately knew not only was he different, but also he was special. Not only do his unique characteristics make him one of a kind, but this situation was going to make us so much closer.
I remember entering the doors of the NICU, or Neonatal Intensive Care Unit, at New York Presbyterian Hospital in 2016. When I got close to the crib, I was excited and happy, nervous and afraid all at the same time. With every step I took, I began to notice the amount of medical equipment surrounding him. I couldn’t help but imagine how many of those machines were physically attached to him.
I arrived at the bedside of the crib, but I couldn’t reach over to see him. My mother got a chair and placed it near the crib so I could climb up and see him. When my eyes looked at him, all I could feel was the tears rolling down my face. I asked my mom, “Mom, why can’t he frown, why doesn’t he move his face when he cries?”
Mom said, “Baby, your brother has a rare disorder that doesn’t allow him to perform those basic facial expressions.” I continued asking, “Why so many machines? Why can’t we take him home?” My mom said, “We can’t take him yet. The doctors are getting him healthy enough so we can take him home soon. The machines are helping him get better and stronger so we can take him home.”
Rather than being excited and joyful, I was the total opposite. My body was overwhelmed with emotions and feelings that are still difficult to express. As I heard my mother saying this to me, I noticed from the corner of my eye about 3-4 doctors walking our way. I wasn’t sure if I saw 3 or 4 doctors since my eyes were full of tears and everything I saw was blurry. The doctors stopped at my brother’s bedside as I wiped my eyes. “WHY FOUR DOCTORS?” I screamed.
One of the doctors said to me, “Hey, little man. My name is Dr. Neugarten and we are all gathered here to speak to your mom about what we will be doing today. Guess what? This would be Luis’ last procedure before he goes home. Can you believe that in just a few days he will be home with you?”
I couldn’t answer him or move. I was frozen like a popsicle. All I could say to myself was, “ANOTHER ONE!?” I knew all these procedures were being performed to help my brother not just to become stronger but also to stabilize him so he can be discharged and we can take him and take care of him in the comfort of our own home. I had walked with my mom for seventy-one days to see my brother… even though those four blocks to the hospital were long (one Manhattan block is about four Bronx blocks). I continued to see him get stronger and soon we were getting him dressed to finally leave the hospital. Those seventy-one days were so well spent because the day I was waiting for was FINALLY here!!!
WE WERE GOING HOME!!!!! Taking him home was the happiest moment of my life. Not only did I no longer have to commute every day, but I didn’t have to see him suffering through another surgery. My brother could finally rest comfortably at home, continue gaining strength through physical, occupational, speech, and feeding therapy. Most importantly, he had the most valuable support he needed from his family by his side. What can beat that?
There have been many lessons my brother has taught me through the four years since his memorable entrance to this world, but I can say there are TWO that will always stay dear to me. Can you guess what they are? Put yourself in my shoes for a moment. What can you come up with? I will give you a minute to come up with at least ONE.
Now that you all had a minute to think of it, I will tell you the most valuable lesson for me. The first lesson I learned from this difficult moment is to appreciate everything we have and everything we can do because not everyone has that same privilege.
Take a moment and smile. Appreciate the smile that you just did because my brother will never be able to do so.
Take a moment and frown. Appreciate the frown that you just did because my brother will never be able to do so.
My brother went through eleven surgeries (jaw distraction, G-tube placement, three strabismus surgeries, hardware removal, two Achilles tendon lengthening, tethered cord release, and two nerve transpositions) while he was admitted, and he came home stronger and more powerful than ever. My brother’s willpower and strength is one of the main qualities I admire the most.
This experience helped me realize the second lesson I’ve learned from it. This moment not only helped me realize how to be appreciative for EVERYTHING, but it showed me how strong and powerful we ALL can be since our deepest strengths are within us. We have the power to overcome everything and anything that comes our way since our willpower is waiting for us to unleash it.