The Story of a Survivor
This is always very hard to talk about and remember, but I think that the experience I want to tell all of you can inspire lots of people, it’s the story of a survivor.
I’m going to start by talking a little bit about my family; we’re a family of six, my parents, three brothers and myself. My parents have always tried to give us the best they could, they’ve been the best guiding is through the right path and they’ve taught us to always believe in ourselves. I wouldn’t be the person I am today if it wasn’t for them, they’ve always supported every single one of my decisions and I know that at the end of a hard day, they’re always going to be there to pick me up and make me feel better. My brothers have always been my best friends, when we were growing up there was a long period of my life that I didn’t feel the need to make a lot of friends because I knew I had them; when our little brother was born, just before my eleventh birthday, light was brought to our family, a new baby for my parents and a reason to try and stay young as long as they could.
Life without my brothers would be boring, I wouldn’t have anyone to talk about all of those childhood experiences, shows, toys, movies and video games we shared together; they are the ones I know will be there for me forever (because they don’t have an option), they pick me up when I fall and they always take care of me like three little fathers. My family is not perfect obviously, we have issues sometimes, problems and fights like any other family, but the love we have for each other is something I can really brag about, we’re very close but our unity was not something easy to achieve.
Since I can remember, the brother that came after me (11 months younger than me) has had multiple health issues. Juan Di has always been the regular shy kid that eats a lot, he is obsessed about exercise, has natural comedy skills and a heart of gold. He was born before he was supposed to at 6 months, he weighted one pound and a half and he was on an incubator in the ICU for three months until his weight got up to five pounds. Since he was three years old, Juan Di has gone through a lot of medical issues, after prescribing him with an endocrine medication the problems in his health started getting worse. After an appendectomy, when he was three and a half years old my parents realized that Juan Di had a Pseudo Cerebral Tumor that was treated in time but caused a lot of pressure in his right eye; after a lumbar puncture, my grandfather Dr. Manuel Antonio Guandique (the best neurosurgeon ever), discovered that Juan Di had very high intracranial pressure which they treated by inserting a Lumbo Peritoneal valve; this valve basically adjusts the flow of the encephalic fluid (this is the liquid everyone has around the brain and the spine that protects them against damage). Juan Di’s brain didn’t regulate the flow correctly and the valve would help him with the process. Long story short, the valve in his brain was changed in 2007 in Atlanta, surgery that wasn’t very successful, the valve worked perfectly for four years but Juan Di always suffered intense headaches that got so bad to the point he couldn’t live a normal life.
In 2011 my parents took him from El Salvador to Miami Children’s Hospital because the headaches were so strong they suspected the valve was not working correctly, suspicion that turned out to be true after a few doctor appointments. The valve was now draining too much liquid leaving the brain with no protection and causing it to touch the cranium, this impact caused the intense headaches; another surgery was done to change the valve so that it would stop draining so much liquid. We thought everything was okay, they all came back home but after he suffered from “dengue hemorrágico” things got complicated again; the intense headaches reappeared and my parents thought it was best to take him back to the United States.
Doctors over there discovered once again that the pressure in his brain was too high so they performed another surgery, he didn’t feel any better so they performed another one to remove the valve altogether; things still didn’t get any better. Six long weeks went by, surgery after surgery with no results; another issue started, he was going blind because of the high pressure in brain and they performed another procedure in his optical nerve so he wouldn’t totally lose his eyesight; issue that fixed itself, surprising the doctors. Finally, after all the suffering, battles and pain, in a test doctors discovered that Juan Di’s cranium was too small for his brain and this was causing all the pressure. They did a cranial expansion and reconstruction to make some more room for his brain, a successful surgery that has worked until now, he’s a lot better and now he lives treasuring each and every day he’s still alive.
I didn’t write this story so that you feel sorry for him or feel sad. I write this story because it’s inspiring, Juan Di, in his 22 years has undergone a lot of surgical interventions and illnesses that have tossed him to the ground but never defeated him. My brother is one of the people I admire the most in my life, even though he’s been through so much he was never beaten, he kept on fighting for his life every moment and through the tough times. My family is what it is now because this experience changed our lives; my parents were strong though it all and they transmitted that energy to my brother.
Every problem we face in life, no matter how bad it is, doesn’t always have to be negative, from most of them there’s always a positive effect. We are now closer, we treasure each other’s life more and we try to spend a lot of time together while we can; I want to end this story by telling you that no matter how hard, dark, strong and long the storm is, the sun always comes out in the end, there’s no eternal storm. Lots of times problems strike us hard, they knock us out and we tend to think our life will never be the same again, we struggle to get back up and we don’t find reasons to get up. But I’m telling you, I know it’s hard when life knocks you our but its not impossible to get back on track, you have to keep going and realize life is short so we’ve got to take advantage of every moment and live every day as if it was the last; you have to know that after the storm there’s always calm and that not all problems and issues are negative. Most of the problems and hard times we face teach us valuable lessons that help us create stronger relationships with ourselves, they change our way of thinking and dealing with things, they help up get back on track or choose a new direction.
I’m not going to get into religion because I know it’s a very controversial topic, I’m going to talk about a superior being, the one I believe loves me and has created everything we see. I believe God worked through the doctors that saved my brother and I do believe in miracles because I see one ever day and lives in my house.
But this is just my humble opinion and the story of a survivor and if my family could get out of this storm after years of sailing in the darkness, I know you can and will get out of yours, you just have to have some faith (it doesn’t matter what you believe in) and a lot of patience. You’ll read me later.
