Eli’s Story by Mom Meital Benari

Our journey started on January 16, 2011, when our four-month-old son Eli suddenly collapsed at home. He was taken to the ER. He was intubated and resuscitated, and suddenly, our baby, who was completely fine and healthy, was in an extreme and super delicate situation where the prognosis was uncertain. Thank God our son was able to survive, and here we are ten years later, still fighting to get a diagnosis. Eli suffers from high blood pressure, recurrent respiratory infections, hypotonia, scoliosis, constipation, developmental delays in all areas, and behavior issues.

These past ten years have been an incredible journey, and I wanted to share what I have learned. I realized that I could see my life from a very dark, painful, unfair, sad, “why me,” angry, frustrated, and scary place. We now live in no man’s land, a place where just a few people can really understand us, where sleeping a whole night without waking up doesn’t exist, 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 to progress, where you need to keep going no matter what, where when your son screams in pain you can’t do anything about it, and where sometimes you feel so desperate that you just want to disappear!

We live in a world full of disappointments and frustrations. But I also realized that I’m in a world where people care. Even though they may not understand us fully, they care and want to help. In this world, you realize that you are stronger than 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 has 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 in how we deal 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 happen in our life. It’s 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 have prayed and are 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 and 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 taught 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!”

Guest post by Meital Benari, Rare Mama to Eli