When Mommy brought our little sister Mindy home, we all knew she was special. "That's why we're taking her in," Mommy had said. "Otherwise she would have
ended up in a non-Jewish home."
"Just look at her eyes," Mommy said, as she bustled in the door, a gigantic pink
quilt in her arms. "Can't you just see that she's smart?"
We couldn't really. In fact, we could hardly see her at all. Mendel and Rochel, my little brother and sister, were jumping up and down trying to get a good look. Bina,
who is almost eight, whispered to me, "Do you think we're really going to keep her forever?"
I took a good look at Mommy's face. It was shining with happiness. "Looks to me like Mindy is here for good," I said.
Mommy laid the baby on the sofa. "Now you can all see her. Be very gentle." Then she took out the camcorder and began taking a video of all of us fussing over
"What's supposed to be different?" Bina asked curiously.
"I read about it," I said. "Slanty eyes, stubby fingers, a little nose, and they stick out their tongues..."
"Maybe Mindy doesn't really have Down syndrome," Bina said. "She doesn't look like she has slanty eyes. Her nose and fingers are okay too. The doctors could have made a mistake."
Just then, Mindy yawned, and stuck out her tongue. "See," I said. But then she pulled it back in. We were puzzled.
"Mommy, what does Down syndrome mean?" Bina asked.
"It means that Mindy has an extra chromosome," Mommy said.
"What's a chromosome?" Rochel asked.
"That's a good question, Rochel. Chromosomes are what make you what you are. They give you freckles. They make your hair the color it is. They make your eyes blue or brown. They determine how tall you will be, how much you will weigh, and a lot about your character. They are like the letters of the Aleph Bais that make up words. Just like there are 22 letters of the Aleph Bais, there are 23 sets of chromosomes in every person."
"Where are they?" I asked.
"They're everywhere, in every bit of you," Mommy said, giving me a pinch. "Since Mindy has an extra chromosome it means that some things will be harder for her to do. But her neshama is just like yours and mine. It's up to us to help her and teach her, so her neshama can express itself. If we're smart, we'll learn a lot from Mindy, too!"
Mommy looked at all of us and smiled brightly. Then she took Mindy upstairs and laid her in a crib. She taped a copy of the "Shir HaMaalos" Psalm to the headboard, placed a Chumash, and a pushka beside her, and decorated the crib with Alef-Bais cards.
Later on, Mommy gave Mindy to me to hold. Then I realized something about her that was different. "Ma!" I exclaimed, "Picking up Mindy is like picking up a bowl full of jelly!"
"It's called low muscle tone," Mommy sighed. "Soon, therapists will be coming to show us what to do about it."
The doorbell rang. Rochel ran to get it. It was Mrs. Frisch, who lives across the street from us. She has frizzy gray hair that sticks out all over her head, and wears square metal glasses which hang precariously at the tip of her pointy nose.
"I don't understand, Sheina, why you chose to take in this child," Mrs. Frisch said to Mommy. "There are organizations that take them. That's what Mrs. Gold did. Tsk, tsk, tsk."
"No one is taking this baby except us!" Mommy said, holding our baby tightly. Rochel and Mendy jumped up protectively, hugging Mommy and Mindy at the same time.
"She's ours," they cried. "We love her and we wouldn't give her away for anything!"
"Tsk, tsk, tsk," repeated Mrs. Frisch.
We didn't see Mrs. Frisch again for almost a year. I can't say that it was a picnic. Almost every day a therapist came to teach us what to do for Mindy. Most babies know how to drink as soon as they are born. For Mindy, that was hard work. After a few teeny gulps she usually fell asleep. A feeding therapist told us to tickle Mindy's feet, so that she would wake up and drink a little more. She said if Mindy didn't finish a bottle a day, she'd have to go back to the hospital. When she finished a quarter of an ounce we'd all applaud.
The more we were with Mindy, the more we could see that she was really trying. We decided that with time and help, she would surely be able to do whatever she had to.
As Pesach time drew near, Mindy was almost a year old. She wasn't walking, or standing, or even crawling yet, but she could squirm on her tummy half way across the living room. When we sang "Hashem is here," she kind of croned along, "Uh-uhhhh." She could bang her Alef-Bais block together. When Mommy picked her up, it seemed like she said, "Mhuh!"
"'Mhuh' is like 'mah,'" said Mendy. "Maybe she could say the 'Mah' of the "Mah-Nishtana!"
"Let's teach her," agreed Rochel. "Mrs. Frisch is coming to the Seder. Let's show her that Mindy can say 'Mah.'" They gave Mindy 'mah' lessons every night.
For the Seder, Mindy had a new pink dress with matching slippers and a headband. But both Seder nights Mindy was sleeping. Mrs. Frishch peeked into her crib, saw her sleeping with her Alef-Bais blocks, sighed, and said, "Tsk, tsk, tsk."
The next year passed very quickly. By her second Seder, Mindy had learned to stand up and take half a step. Mommy took a video of Mindy 'walking,' and of Mendy and Rochel reading her Alef-Bais books, and of Mindy singing, "Hashem is here." It sounded more like 'uh-uh-uh-uh,' but we knew what it meant. Her mouth muscles were getting stronger and she could say, "Ma-ee!" (Mommy) very clearly now. Mendy and Rochel gave her 'Mah' lessons again, and we all hoped that on the Seder night she would say 'Mah.' "She can do it! She can do it!" Rochel exclaimed as she burst into my room, just two days before Pesach. "She said 'Mah Nishtana' so clearly that even Mrs. Frisch will understand it!"
We could hardly wait for the Seder. But Mindy started crying uncontrollably. "A tooth attack!" Bina exclaimed. Mindy was cutting a new tooth. When we started the Seder, she was still crying so loudly that we couldn't hear a thing. Mommy finally carried her out of the room. Mrs. Frisch just said, "Tsk, tsk, tsk."
By the next year, Mindy was almost three. She could walk now, even without holding someone's hand, and her mouth muscles were stronger. She could say 'Ah-ee' (Tatty), 'Meh-ee' (Mendy), 'Ed-ah' (Bina), and 'Ah-eem' (that's me, Chaim). She could sing "Hashem is Here" much better too, (Ah-eh ih ih), but very off key. Mindy could also recognize all the letters on her Alef-Bais chart. Just before Pesach, Mommy made a video of Mindy pointing to her letters. Mendy and Rochel tried even harder this year to teach Mindy the 'Mah-Nishtana.'
That Pesach, our cousins from Minnesota joined us for the Seder. Our cousin, Boruch, who is two months younger than Mindy, got to say the 'Mah-Nishtana' first. He said to the end of the second question, without even stopping for breath. Mrs. Frisch applauded.
Then it was Mindy's turn. She could say the beginning with a little help. Mendy whispered, "Come on, Mindy! 'Mah!'" Mindy didn't say anything. " 'Mah!'" Mendy whispered again. We waited, and waited. "It takes Mindy time to find the word," said Rachel. Still nothing. I fidgeted nervously. (How could she not know it? We had learned it with her so many times!) Then, finally it came. "Mah," she said.
"Great!" Mendy whispered. "Now say 'Nish'!"
Mindy paused. "Hihss!"
"I knew you could," Mendy whispered. "Now: 'Ta-na,' Mindy".
They went all the way up to 'ah-ah-uh ah-eh!' which was 'Ho-lye-lah hazeh.' We thought Mindy was fantastic, but way before Mindy finished, Mrs. Frisch had fallen asleep. When she woke up, she didn't forget to say, "Tsk, tsk, tsk."
The next year Mindy was almost four. She could run, climb on the jungle gym, and go up stairs by herself, if there was a railing. She could say more words a lot better too: Duze (juice), Dop! (stop), and Ickle! (tickle). She loved to sing (Ah-Semiz-Ear!) loudly, and even more off key.
She could also say the sounds of all the letters of the Alef-Bais. Mommy got it all on video. We knew that Mindy would be able to say more of the 'Mah Nishtana' this year. Behind closed doors Rochel and Mendy worked with her. We could hardly wait to see how well she'd do. Three of our cousins from Baltimore were younger than Mindy, so they got to say it first. The two and a half-year-old was such a genius that he knew the whole thing. With a little help Mindy could say until 'Ha-lay-los.' Mrs. Frisch chimed in, "Tsk, tsk, tsk."
This year, Mendy and Rochel assured us, was going to be different from all other years! "Mindy can almost talk now," they pointed out. "She says, 'Mindy car!' when she wants to go for a ride. She says 'Self!' when she wants to do something by herself. More...Duse... Peeze,' she says slowly, when she wants more juice." Mendy and Rochel started 'Mah-Nishtana' lessons even before Purim. "My little sister is only one and a half, and she already talks like that!" observed Rochel's friend Sara Stern. "Well," replied Rochel, "You have to remember that Mindy had weak mouth muscles. She's had to study talking for almost five years. And she's still not giving up!" Sara had to admit that not giving up even after five years was pretty good.
Finally the Seder night arrived. Our Minnesota cousins and our Baltimore cousins joined us again. Mindy looked quite grown up. She was wearing a "little sister" version of the same pretty navy and white dress that Rochel was wearing. She was also looking into her new picture book Haggadah, a special present from Mommy. Finally it was 'Mah-Nishtana' time. The Minnesota baby was eight months old, and could already say "mah." Our one and three-quarter year old Baltimore cousin got up to 'Ha-lay-los,' with help. The Minnesota two-year-old could ask the first question. And our Baltimore genius four-year old cousin wanted to explain what "night" really meant. Tatti said we'd talk about it later. Then it was Mindy's turn. She stood up on a footstool, smiled at everyone and announced, "Mindy turn." Then she looked inside her Haggadah. She paused. We waited. Then slowly and clearly, she began to read every word to the end of the second question! Then she looked up at Tatti, and smiled, "Mindy Kes Chun. Now Tatti...peze, ahn-sir!"
Mrs. Frisch's frizzy hair looked electrified, and her glasses nearly jumped off the tip of her nose. "The child can read?!"
"Yes," Mommy replied with a gleam in her eye and a broad smile. "She's been practicing for a long time."
Then everyone started talking at once, saying how amazing it was, that Mindy could read, how wonderful, a miracle. And how special and fantastic Rochel and Mendy were, for teaching Mindy how to read! A miracle! "A miracle after five years work!" Bina reminded everyone. "Some miracles happen suddenly," Mommy said softly. "They just pop out in our faces. Other miracles take time to grow - but they are still miracles!"
After that, the whole Seder was different. We all felt that Hashem had done something so special for us, like He had taken us out of Egypt. Mindy smiled and looked incredibly sweet. Even Mrs. Frisch seemed unusually calm. After the meal, we poured the wine into Eliyahu's cup, and the children went to open the door. "Mindy go too." Mindy insisted that she should go along. For some reason, Mrs. Frisch went with them.
"Is the door open?" Tatty called. When they came back, Mrs. Frisch was very excited. "Sheina, do you know what she said?" Mrs. Frisch exclaimed. Bina and Rochel were both grinning.
"Who said?" Mommy asked.
"Mindy," Mrs. Frisch replied. "You're not going to believe it. We opened the door, and suddenly Mindy said, 'Ohh.'" Mrs. Frisch imitated her voice. "Ohh. All the doors of Heaven are open!'"
"I guess they really are," Tatti beamed. "I hope you asked for every good thing."
"Can I explain what 'night' is now?" said our Baltimore cousin.
"All right," Tatti nodded.
"Night is exile. It has lasted almost two thousand years! But it is going to end very soon, and Moshiach will take us all to Yerushalayim. No one will be sick, or poor, or have learning problems any more!"
Suddenly Mindy began singing slowly and sweetly, "Hashem is here. Hashem is there..." We all began singing together with her.
"My goodness!" Mrs. Frisch exclaimed. "I-I think I'm going to cry. The child is really special. She knows much more than I ever thought. Tsk, tsk, tsk."
This time everyone agreed with her.
Reprinted With permission from Moshiach Times.
For Further information please call (718) 467-6630
Artwork by Mr. David Berg
This article first appeared in issue #9 of Down Syndrome Amongst Us