The Moment that Transformed My Life

By: Josiah Velazquez

Imagine not being able to smile, frown or even eat and yet doctors can not 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 saw my brother, Luis, I immediately knew not only he was different but he was special. Not only his unique characteristics makes him one of a kind but this situation was going to make us so much closer.

I remember entering the doors of the NICU (Neonatal Intensive Care Unit) at New York Presbyterian Hospital in 2016. When I got close to the crib, I was excited, happy but nervous and afraid all at the same time. With every step I took I began to notice the amount of medical equipment around him and I couldn’t help but imagine how many of those machines were attached to him. I arrived at the bedside of the crib and I couldn’t reach over to see him but my mother was able to get a chair and place 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 expression”

I continued asking, “ Why so many machines? Why can we take him home?”

My mom said, “We can’t take him yet because 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 with 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 doctor’s 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 is, “ANOTHER ONE!”. I knew all these procedures were being performed to help my brother not just to become stronger but 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 walked with my mom for 71 days to see my brother and even though those 4 blocks to the hospital were long ( 1 Manhattan block is about 4 Bronx blocks). I continued to see him get

stronger and soon we were getting him dressed to finally leave the hospital. Those 71 days were so well spent because the day I was waiting for was FINALLY here!!! WE GOING HOME!!!!!

Taking him home was the happiest moment of my life. Not only I didn’t have to commute everyday, but I didn’t have to see him suffering through another surgery. My brother can finally rest comfortably at home, continue gaining strength through Physical, Occupational, Speech and Feeding therapy and most important he had the most valuable support he needed from his family by his side. What can beat that? What can you say is more significant and jovial than this moment here?

There have been many lessons my brother has taught me through the 4 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 11 surgeries ( Jaw Distraction, G-tube Placement, 3 Strabismus Surgeries, Hardware Removal, 2 Achilles Tendon Lengthening, Tethered Cord Release, 2 Nerve Transposition) while he was admitted and came home stronger and powerful than ever. My brother’s will power and strength is one of the main qualities I admire 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 strength is within us all. We have the power to overcome everything and anything that comes our way since our WILL power is waiting for us to unleash it.