If they get scared or if someone bothers them, they can’t yell out or complain or say what they want. But enough about what they can’t do

I

f you met me now, you might think I’m a typical girl from a typical family, and you’d be right. Although there is one small difference: My five-year-old identical twin brothers, Dov and Avi, don’t live at home with the rest of my family.

When I learned that my mother was going to have a baby, I was super-excited. I was five at the time, and my brother Yossi is two years younger than me. Then one day I was at kindergarten, and my grandmother arrived to pick me up. She told me that my mother had twins! I was expecting one new sibling, and now I had two! I was so excited and happy; I couldn’t believe it. My mother had tried to tell me in advance that things might not be regular after the baby was born, but most of what she said flew over my head at the time.
I remember visiting my mother in the hospital; we all had to wear these special gowns and gloves just to see the babies. I remember that the twins were tiny. They were hooked up to all kinds of machines.
The twins were born in a children’s hospital and were placed in the NICU, a special nursery where they take care of babies that need a lot of extra care. We live an hour and a half away from the hospital, and my parents had to travel back-and-forth a lot. Finally, when Avi was three months old, he came home. We were so excited! He was finally eating and breathing on his own… and then he got sick and had to go back to the NICU.
Dov, who was the smaller baby, only came home for the first time when he was seven months old. There were nurses and medical equipment all over our house and machines that beeped and made tons of noise.
Both babies ended up needing a feeding tube and oxygen and every month or so, one or the other would be back in the hospital for another ten days. There was a lot of back-and-forth to the hospital. Many nights when my parents were in the hospital with either one or both boys, I had to sleep at my grandparents, and many times I’d need to go to friends or grandparents after school when my parents couldn’t be home.
It was very hectic, especially for my parents. By the time the twins were 15 months old, Avi had been in the hospital for months and had gotten a permanent breathing tube called a tracheotomy (or trache for short), and Dov had gotten sick yet again and he was going to need one too. My parents spoke to rabbanim and made the difficult decision to put both Dov and Avi in a facility with full-time nursing and respiratory care.
I wonder if they will ever be able to come home and live with us. Both Dov and Avi can’t walk, talk, or breathe on their own. They can’t eat. They don’t even cry like most babies do. If they get scared or if someone bothers them, they can’t yell out or complain or say what they want.
But enough about what they can’t do.

(Excerpted from Teen Pages, Issue 769)