‘He’s the same
brother...
with
different abilities’
Sophia Ali (above right) remembers her brother Malik as a “really
athletic four-year-old, enthusiastic about learning and the best brother I could ever have. Then everything collapsed,” the 10-year-old says.
Malik went in for a 15-minute
surgery to remove his tonsils, had unexpected complications and
suffered a severe brain injury. He spent more than a year in hospital and lost the ability to speak, walk and use his hands.
BLOOM asked Sophia what it was like to have a brother who was healthy one minute and critically ill the next.
How did you feel when Malik got so sick?
I was really upset because I had these memories of a brother who was always by my side to
comfort me if I was sad and we did all these fun, exciting things together, and I thought I will miss those things. But I also had something inside me — a hope — that Malik would get better and I tried to pray a lot and to think positive.
What has been most challenging?
When people tell you that your brother is not going to walk, talk or be able to do anything like normal kids anymore — that’s really upsetting. The hardest thing is I know there isn’t going to be a miracle — a day when he will suddenly be better. Even if I pray and think positive, negative things will happen too.
What good things have you learned?
As time went on, I learned that Malik is the same Malik. He’s the same brother I used to have, but with different abilities. There are different things he can and can’t do. Even if your sibling is
disabled, he’ll still smile, which will make you smile. And he’ll always love you, even if he can’t say it or show it. I want to become a doctor when I grow up and I know a lot about medical things now because of Malik.
What advice would you give other siblings?
When you’re upset or really sad about what’s
happened, try to find the positive side. You can still do most of the things you used to do with your brother or sister. If you used to do finger painting and your brother can’t see anymore, you can help by putting your hand over his hand and still be able to paint together, but in a different way.
If your brother or sister is paralyzed and can’t hug you, you can still hug them. Try to think of
positive things, rather than worrying.
How do other people react to Malik?
Some people are rude. When I’m outside with my brother, they stare at me or say mean things like “Your brother can’t walk. Why’s he in a wheelchair?” I get really mad. I explain what happened, and that just because Malik’s in a wheelchair doesn’t mean he doesn’t have feelings, and that what they’re saying hurts. The nice
people understand. My friends have stayed good friends. Sometimes strangers help us by holding a door or asking if they can carry something.
Do you ever feel left out?
Everyone feels like that sometimes. My mother reminds me that I’m really special too and they care about me, it’s just that my brother needs more attention. He relies on people to get him food if he’s hungry, or to help him move, but I can do those things myself. My mother knows how I feel so sometimes she takes me out alone to go shopping or do whatever I like to do and my Dad stays home with Malik and my sister.
I know my mom really cares about me even though she’s always with my brother.
Is there anything else you’d like to share?
I always wish things weren’t so hard for Malik.
I feel guilty because I don’t have the problems my brother has. He struggles with a lot of things that are simple for me. If he didn’t have these problems, he would be doing the same things as me. But it’s not my fault that this
happened. If your sibling has a disability, it’s not your fault.