Amir and Amal don’t know each other. But if they ever meet, they will discover how much they have in common. Amal is my nine-year-old daughter, who you have read about in this blog. She is my middle child, she is my hope, the coolness of my eyes, Lil D’s best friend and champion and fellow autism advocate/wrangler. Amir is the 10-year-old son of Angie Emara. Angie lost her four-year-old son Adam to Hunter’s Syndrome in 2009 and this year took her grief public with the #MyJihad campaign, declaring that her Jihad is to “march on despite losing my son.”
Amir and Amal both wrote short essays about their own jihad, about the brothers they love – a brother lost to Amir and a brother whom Amal sees every day struggling hard with his autism. Read their words, understand what jihad really means, and then ask yourself – what’s yours?
By Amir Mahmoud, age 10
From the laughter and happiness, to the tears and sadness. The tragedy year is 2009.
When my brother Adam was born, he was a cute and simple baby. Nothing was wrong with him. Two years passed as I watched him grow into a kid. When Adam turned 2, Lara was born — not so cute.
We watched her grow — still not so cute. Lara was one, Adam was three and I was five, and Aiman was born. Months passed; Aiman getting cuter, life was good. When Adam hit three and a half and Aiman hit nine months, we found out they both had Hunters syndrome.
Well with two kids that have a disease and another two kids who act like monkeys, my mom called up my grandparents for help. She wanted them to take care of us for a while. They said yes. Our grandpa picked us up and headed for Michigan.
My birthday came up. Since my mom couldn’t come, my aunt and uncle were in Michigan. It was a good thing they were there. Over the phone my mom called to say hi and happy birthday. So did my dad. Then they put Adam on the phone. I started crying. My mom told him, “Say, ‘Hi Amir.’”
“Say, ‘I miss you.’”
“I MISS YOU”
“Say, Happy birthday.”
It was funny and sad because I could hear my mom talking quietly telling Adam what to say and he was screaming it happily to me.
After that I cried my heart out. We couldn’t talk any longer; the Internet was down.
Three weeks later I was crying every night, saying “I want to go home.”
I think I convinced them because later on my grandpa and I drove to North Carolina. My grandpa had a huge cooler of grapes and water bottles. He put songs like “Shoo Fly” and “Hokie Pokie.” I would laugh and sing. I took a nap. I woke up at night to this big building. I read that it was the hospital. As we went in my grandpa was asking where the room was, but I saw my mom and I ran to her.
She had a mask on, but she was definitely smiling. She was walking me to the play area. I found a scooter while my grandpa was doing something. I finally felt like things couldn’t be better, like I could relax now.
While I was riding fast I saw a window, and my dad had a mask too. I knew his expression of excitement. I opened the door and hugged him. He hugged me but carried me outside. I told him I wanted to see Adam. He told me that I could, but he needed to get a mask for me. He said he would be right back. He got it and put it on me, and I walked in. I saw Adam sleeping. It was dark and they said, “Adam, Adam. Wake up. It’s Amir.” He woke up and I couldn’t believe my eyes … my brother is …BALD!!!!!
I asked why he was bald. My dad said it’s because of going through transplant and same for all the other patients. Adam said, “Amir Amir! It’s Amir! I love you.” Then I hugged him and kissed him. My dad said “Let’s go and see Aiman.” We went to the room next to Adam. The door opened,
“AAAAHHH stranger!!” Aiman said. Aiman was also bald. Didn’t really feel like hugging him. My dad asked the nurse if we could bring Aiman to Adam’s room. She said yes. My dad took him out of his bed and brought him to Adam’s room. My grandpa talked to my parents while I played with Adam and Aiman. We went home, and my dad stayed with Adam and Aiman.
I kept going back and forth between North Carolina and Michigan. I felt jealous of Adam because I felt like he always got everything he wanted.
Well, Adam got sick a month later. So I had to leave and go back to Michigan for the final time.
I would cry myself to sleep every night when I was in Michigan.
But one day I was informed that Adam died. My heart completely dropped. I went to his funeral. His cheeks were rubbery (well they looked like rubber). He had a bit of a smile and was wrapped in a clean white towel. I stood over him as my last tear fell into his coffin, and then they closed it. That was the last time I saw him.
I have learned that being away from family makes you see how much you appreciate them.
By Amal Ali, age 9
I have an older brother named Lil D*. He is diagnosed with severe autism, which means he is nonverbal and he cannot talk, but he can make clear noises and sounds. A Jihad means your struggle, and my brother has a Jihad that influences him as well as me. His struggle is very important to me, and I have tried to help him as long as I can remember. Lil D takes a lot of space in my heart because he is so unique and special, and he deserves a lot of help and attention.
Lil D’s Jihad is his autism, because he cannot speak and tell us his feelings and what he wants like we can. This results in his frustration and his tantrums, which also frustrates me because we can’t always stop him and make him feel better every time he gets frustrated. This specific struggle impacts the people around him, because we need to know how he feels and what he needs, or Lil D will get mad when he doesn’t have what he wants.
I think it is important to give people what they need; it keeps them satisfied and very happy.
My brother’s Jihad is important to me because this struggle he has makes him upset or frustrated, and I definitely want him to cheerful and satisfied with me and the rest of his family. We can’t always tell what he needs right then and there, and if he doesn’t have what he needs when he needs it, he gets frustrated. He just doesn’t have the voice to tell us.
We all are used to it, and we try to understand Lil D’s needs and wants. He isn’t always going to be able to tell us, and he gets mad because he wants to say something and then he knows he can’t.
All the parts to my brother’s Jihad matter, and they deserve quite a bit of attention, because he can’t do a lot of everyday things by himself. All of us need to figure out a way to help him, so he will stay happy. His problems and struggles are all part of his one big Jihad, and now some of us understand parts to it, which is good.
I dream every night that he would lose all his autism and be a normal person like me. I hope he wins this Jihad someday, somehow.