Undiagnosed Disease Awareness: Eli's Story
March 2, 2017
by Meital Benari
Our journey started on January 16, 2011 when our son Eli of 4 month old suddenly collapsed at home. He was taken to the ER. He was intubated and resuscitated and all of the sudden our baby, that was completely fine and healthy, was in an extreme and super delicate situation where the prognosis was uncertain. Thanks God our son was able to survive and here we are five years later, still fighting in order to get a diagnosis. He suffers from high blood pressure, recurrent respiratory infections, hypotonia (low muscle tone), reflux, developmental delay and a distended belly.
These past five years have been an incredible journey and I wanted to share with you what I have learned.
I realized that I could see my life from a very dark, painful, unfair, why me?, sad, angry, frustrated and scary place… why not? We live now in nobody’s land, in a place where maybe just a few people can really understand us, where sleeping a whole night without waking up doesn’t exist, in a land where we spend more money on medications than on food and clothes, where we visit doctors more often than going to a movie, where we spend more time talking on the phone with the insurance company than with a friend, where doing therapy is a must in order to progress, where you need to keep going no matter what, where your son can scream of pain and you can do nothing about it, where sometimes you feel so desperate that you just want to disappear!
We’re living in a world full of disappointments and frustrations, in a world that can sometimes get pretty slow…but I also realized that I’m in a world where people care, they may not understand us 100%, but they care and they want to help. In this world you realize that you are stronger than what you think you are, this world is ruled by love and compassion, strength and courage, vulnerability, perseverance, hope, grace and gratitude and this is the world that my son Eli had through me. This is the world I’m choosing to live in.
I realized that for every event in our life we have a choice of how we are dealing with it. We can live in pain and fear or we can live with love and gratitude. There are ALWAYS two sides. When we understand that life doesn’t happen to us, it happens FOR us, is when we will have this incredible sense of peace and release. It is all about the meaning that we give to the events that happens in our life. It is where your focus goes. You own your world so you can control the meaning that you give to it.
I want to finish with a big THANKS to all the people that I know and that I don’t know that had prayed and is still praying for our son, that brought us food to the hospital every day no matter how long we stayed there, for all the phone calls, text messages that helped us to feel support and gave us the strength that we needed in order to keep going. To the new people that I have met in this growing process and that have thought me new ways of seeing life. To my husband and my kids for having so much patience with me in this roller-coaster of life and of course a huge THANKS to my teacher, to my fighter, to my son ELI for this incredible lesson…. “Because you are amazing just the way you are”!
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