My Mama Drove the Short-Bus

My mom, Magdalena Bueno, came to the States in 1964 from Quito, Ecuador at the age of 21.   She had been working as the secretary for the embassy of Guatemala when she decided to visit her brother in Chicago for six months.   Here, she met my father, Shefket Chapadjiev, a man who had only recently escaped Communist Bulgaria.   Soon they were married, and my mom was pregnant with my brother, Sammy (Sadac) Chapadjiev.   Sammy was born with brain damage.

I came into the story much later than all of this.   Ten years younger than Sammy, I never really had to take care of him the way my sister, mom, and dad did. The bulk of this responsibility fell on my mom who had arrived in a country without the language, resources, or knowledge of what it meant to raise a handicapped child.   Recently I interviewed my mom on her experiences.  

What were your first thoughts on coming to America?

Oh my Gosh.   I came from Quito where I never even saw a TV, to where my brother already had a TV.   It was completely different- amazing.   It was like a dream.

One of my first memories was when I was working very close to Marina City.   It was my first winter here, and somebody said it was snowing outside.   I was so excited!   I went to the washroom, because I knew it had a small window near the ceiling, and stood on the toilet so I could see the snow falling.   That was the first time I saw the snow.

How did you meet Dad?

I met Dad when I was going to school for English.   He was going with (his friend) Hamid, and I was going by myself at that time.    Somehow, they started waiting for me outside. He must have just said, 'Hi', because neither of us spoke English yet. Then he invited me to go out. We used to go out to a place called Café Berlin, a place for dancing and music.

How long before you and dad got married?

Two years.

And next thing you know, you're married to this Bulgarian.

I know.   Jesus.   At first I was thinking, what did I do? Different religion, different habits, different way of living, different food, everything was different. It was really difficult at first.  

Were you planning on having a child?

No!   It was too soon- I didn't know what I was doing.   At that time, we didn't plan like they plan now.   Suddenly, I was pregnant, working, and living in this little apartment. Sammy was born on May 21, 1967.  

What doctors did you go to while you were pregnant?

Doctors?   Oh, Sabrina!   I still didn't speak the language!   Daddy found this Yugoslavian " Doctor ", who didn't speak English either.   I would tell Shefket what to tell him and then they would speak Bulgarian to each other. But this man wasn't a doctor.   He was a butcher, honest to God.   He had no idea what he was doing!   He just pretended he was a doctor for all these people from other countries.    One time, we went for an appointment and I saw him acting as a dentist for someone. He was people's 'dentists', or their 'doctors', - he would pretend to be anything you needed him to be, but I really believe he didn't know anything about anything.  

Did you go to him because you didn't speak English, or because you didn't have money?

Probably both.    What a mess!

Can you tell me about what happened when your water broke?

I was working at home, and one old lady was going upstairs with a bucketful of wet clothes.   I said, "No, I'll do it for you." I took the heavy bucket, went upstairs and saw that my water broke in front of her steps.   But I was only 7 ½   - 8 months pregnant: it wasn't time yet. I called Shefket to call the doctor, and the doctor said, "Don't worry about it. Just go to bed and stay there. Don't move."  

That was so stupid!   If I knew better!   Jesus, it makes me cry now.   Daddy was working two jobs at that point, so he left me a sandwich and a glass of milk and went to work.   And here I was with my contractions.   I mean, you can't do that!   Your water broke; you go and have the baby!   I really believe that this is why Sammy is the way he is.

When did you realize something was wrong with Sammy?

At the time I was pregnant, Martha was also expecting.   Her son, Ivan was born a month after Sammy.   When Martha and I would get together, I would see that Ivan, being one month younger than Sammy, was already doing things Sammy wasn't.   If you gave Ivan toys, he would play with them- Sammy would just drop them.   I went to a doctor and said, "I think something is wrong with Sammy", and he said, "You're comparing him with everyone else. Sammy's just different."

But then, Sammy started having asthma attacks.   They had to give him oxygen in the hospital, and we ended up in the ER so many times.   One time, he went to the hospital for asthma, he was probably six months old, and I asked the doctor, 'As long as he's here, can you make him some kind of tests?'   These days, they do the tests the same day kids are born, but back then, they didn't. I had to leave him overnight. It was so hard to leave the hospital without him.

Soon they had the results of the test and called me to say, "You'd better come in to the office."   It was a long drive, but Sammy and I went, and they told me, "He's mentally retarded, will never walk, never be toilet trained, and never be able to talk. They told me he would be just like a vegetable.   When I started crying, the doctor said to me, "Don't cry.   You can go give him to a state institution, go home and have another one. "

I took Sammy out from that office, and started walking on some street in Chicago, thinking, "They are stupid, they don't know what they're talking about!   I will make him walk! I will make him talk! He will be okay!'

It was so confusing, because at that point, I had never seen a mentally retarded person. I never saw one in Ecuador.   They probably hid them; so I didn't even know what they meant by that. My mind was spinning, thinking, "What will I do?   Maybe I can take him and myself to an island to live by ourselves so no one will make fun of him."   I wanted to take him to an island because I was also thinking that if I went some place and they didn't accept Sammy, they wouldn't accept me. I didn't know what to do.  

I went to buy a book.   I was doing my best with English, but it was still hard to read. The main thing I understood in this book was that they said that the number one thing for kids like Sammy was to have a schedule.   To give them a routine.

Well, I'll tell you- I made a big schedule that filled the wall.   And this schedule wasn't by the hour- it was by every 15 minutes!   We did everything by this schedule- What time he washed his hands, what time he watched Sesame Street. What time he ate breakfast, went to bed, what time he gets up, what time he brush his teeth.

Then one time, I was feeding Sammy and suddenly it felt like he stopped breathing for a second.   But I couldn't tell- was it Sammy, or was I imagining things?   We'd already gone to the emergency room so many times, and with the doctor's constantly telling me that there was no hope, I almost started expecting something to go wrong.  

I took him from his chair and started screaming, "My baby's dying!" and ran downstairs for help.   My neighbor was a nurse.   She came out, looked at Sammy and reassured me everything was alright. And it was.   Nothing was wrong with him. At that time, I was going so nuts with this schedule, things had to be so perfect, so precise, that    I still wonder if that really did happen.

How was Daddy during all this?

Daddy was working a lot.   We really needed the money.   We didn't have insurance, and there were a lot of hospital bills.   Plus, he was thinking that, with Sammy, we needed a little place of our own so he wouldn't bother anybody.   Sammy would be in his walker trying to walk, and the downstairs neighbors would pound on the ceiling because of the noise.    So Daddy was always working, two full time jobs, smaller jobs- whatever it took to pay all these bills, and to save money to eventually buy our little house.  

When did Sammy start walking ?

Oh, I remember how I taught him to walk. He was so cute.   Ivan was already walking, Sammy- forget about it.   So every day, I would try and teach him.   Sometimes, I got so frustrated I would shake him and say, "You've got to walk, you got to walk!' One day, when he was 13 ½   months old, I sat down on the floor and he put his arms around my knees. I backed up slowly, with him still hanging onto me. Little by little I backed up more, until he started walking by himself.   It was amazing.   I was so happy, I called Shefket at work, crying of happiness.   Every time he accomplished anything, walking or talking, it was a big thing because they had told me he would never walk or talk.

How long did it take Sammy to talk ?

At home, he started talking at three or four years old.   But when he finally did talk, he would only talk to me at home, never to anyone else.   He entered Kirk Center (a school for the developmentally disabled), when he was four years old, and didn't speak there for three years.   They labeled him 'MUTE".   I said, "No!   He can talk!"   But they didn't believe me.   Finally, I had to record him speaking for them to believe me.

Were you speaking in Spanish to Sammy?

My mother, who sometimes came from Ecuador to help us with Sammy, always spoke Spanish to him.   I used to speak Spanish to him too.   But one time they told me it was too much for Sammy, that we couldn't speak Spanish at home anymore. I told my mother that, and she went back.  

How long did it take you to toilet train him?

Toilet train?   Well, when Sammy was two years old when I decided- that's it, no more diapers!   And you know what I did; I threw all the diapers away, and every hour or hour and a half, I would bring him to the bathroom.   

Every once in awhile, Sammy would have an accident, and it would be a mess on the carpet.   I hated cleaning it; it would make me so angry that I would shake. When I went to Ecuador, (my brother) Nandito said, "You're driving yourself crazy!" But I trained him.   Hour by hour, I trained him. It took seven years.

By this time, you and dad had moved to the small house in Elk Grove, a suburb of Chicago. What was it like moving with Sammy there?

I didn't know how the other families would react.   I was nervous they wouldn't accept us.   They would call to invite me over for breakfast or coffee, and I was always lying, saying, "My baby's in the bathroom, my baby's sleeping."  

But, when I finally introduced them to Sammy, they helped me so much.   (our neighbors) Judy and Mike were the ones that told me I should put Sammy in a school.   I didn't know they had schools for people like Sammy.   But Judy and Mike helped me to put Sammy in Kirk.   Can you imagine?   He was going on the bus and I could relax a little.   It was a relief for me, and I could finally concentrate on Sophia a little bit, who was just a baby.

One time, somebody said that the kids in the school were being mistreated.    Someone told me that the teacher was spanking them with a ping-pong paddle.   I was so angry, I thought, "No way!   I have to keep an eye on my boy!   How can I do this, though?"

Then one day, the bus driver came by to drop off Sammy and it was a different bus driver than usual.   I went on the bus to say hello to all of the kids, I high-fived them and I took Sammy out.   I went back inside and a little bit later, I received a phone call from the bus company.   It was Mrs. Davidsmeyer, the owner of the company.   She had been driving the bus that day because the person who was supposed to had quit.   She got on the phone and said, "Maggie, this is Mrs. Davidsmeyer, and we need people like you to drive this bus. You understand the kids; they like you.   Would you be able to drive the bus to Sammy's school?"

I thought it was a great opportunity.   If I drove the bus, I could keep an eye on Sammy's teacher to make sure Sammy wasn't being mistreated.   But there was a problem.   Sophia was not even one year old, and I couldn't leave her home alone.   So I said to her, "Mrs. Davidsmeyer, I have a little girl. . ."   She said, "That's okay, you can take her with you."

And can you believe it?!    They made a special chair for Sophia.   It was a wheelchair, but it had hooks in it so I could strap her in so she couldn't move.   She wasn't even one year old!   I remember that whenever I finished driving the bus route, I would put a blanket in the back of the bus and give her the bottle.

Weren't you afraid to drive a big bus full of handicapped kids?

Oh my gosh!   I was so scared.   So scared!   Of course, they trained me, but the first time I drove the bus was the worst. There was a kid in a wheelchair that would stay at a school far away for the week, and I would have to drive him there Monday, and pick him up Friday.   So it was a Monday and it was windy and raining.   I could hardly even see the street. Sophia's in the back and she's crying and I can hear her, and suddenly, I have to drive on this two way street, where the cars are coming right at me.   Sophia's crying and crying, and suddenly, the wheelchair that the kid is in somehow unhooks, and I felt him   fall on me, right on my back.   I'm crying, Sophia's crying, we're in this street and the wind and rain won't stop.   I was so scared.   But I slowly pushed the wheelchair back with my back, pulled off the side of the road, and locked his wheelchair back into place.   

How was your English then?

A little bit better.   But they wanted me to speak over the radio, and I refused to do it, I was so nervous to talk.   The only thing I would say was "10-4".  

Did you like driving the bus?

Yes.   Yes.   Because the kids, oh my gosh!   Do you know, in the beginning, I thought nobody could talk.   I thought they were just make noises.    Then little by little, I began to understand them.   They weren't making noises, they were all talking! Soon, I realized they were damaged more physically than mentally, because they were all in wheelchairs.

And they were smart too!! We had so much fun!   I used to get up and say, "Okay, Ladies and Gentlemen!   We are going to play Name. . .That. . .Tune!!!" I would sing a little, "La la la la laaaa..." and then right away, someone in the back would shout, "Stranger in the Night!!" Oh, they were great!   Some times I would say, "Okay, ladies and gentlemen.   Today, we are not going to Kirk Center.   Today we're going to NEW! YORK!   CITY!!"   Oh, they would laugh.   It was great to drive the kids.

It must have been hard to drive with so many wheelchairs.

At that time, I had to drive seven kids, all wheelchairs.   When I picked them up, I had to make sure I put the wheels on the right way so they didn't move while I was driving.   Sometimes, the kids didn't want to leave the house, so I would be wait for them.   Eventually, I would go inside to help their mothers get them to the bus, so I became friends with their mothers too.

One day, they called me from the office and said, "What are you doing?!   Your job is to drive the bus!    To be behind the wheel!" I said, "If you want me to be that way, you can have my keys, because I won't drive anymore.   How could anyone see a mother that's having a hard time and just sit there watching?!   If you want me to be that way, I won't do it."   Finally, they told me that I could keep on doing what I was doing if I didn't tell anyone.   And so I kept on driving.  

Oh, the mothers loved me.   If they were running late with their kids, I would open the doors and I would wait- no problem.   Sometimes, they would send me with packages from one house to another, 'Can you give this to Sue?'   'Can you give this to Mary?' Oh, all the mothers loved me.  

Do you think this is why Sophia is so good with handicapped kids?
Sophia was always good.   She and Sammy- they were great.   Sammy was great with her too.   I remember one time, Sophia had only been home a few days, and was in the crib, and I got up in the morning to find big, chubby Sammy on top of the crib, sitting down and playing with her. Can you imagine?!   He could have killed her.   We put a big hook up high that would keep the door closed, so Sammy wouldn't be able to reach to open the door. Another time, I got up, found him with a broom- trying to open the door. I still have no idea how he did it.

How long did you drive the short bus?

I drove the bus for two to three years.   I stopped when I was pregnant with you.

And you were pregnant with me for a long time, right?

Forever, honest to God.   When Sammy was about nine years old, I was pregnant and expecting you.   At about that time, we took him to neurologist to have a chromosome test. The day after the test, a woman called me and said, "Miss Chapadjiev, I'm so excited to tell you that I know what's wrong with Sammy."   I couldn't believe it.    In all of those years, no one knew why Sammy was this way.

We had tried to find out. When he was little, I had taken him   everywhere because I was going to find the doctor who was going to cure him.   You have no idea how many places I took him.   Most of them were paid for by the government.   They took x-rays of every single bone of his and put them in a line to examine one by one - everything was perfect.   Everything!   There was no diagnosis. I took him to the universities where they studied Sammy.   We both would sit, quietly, not speaking English while the students tried to ask me questions. What does he eat, what doesn't he eat?   Does he sleep?   Does he this, does he that?" I did my best to answer, even when I couldn't understand them.   One time they took him by the cheeks, and said, "This is what it's like to be handicapped," and I said, 'No, all my family has cheeks like that!' I had taken him everywhere!

Anyways, this doctor was so excited that she was the one that would tell me what was wrong with Sammy.   She said he had a little extra piece in one chromosome, that his brain damage had something to do with his chromosomes.   I remember asking her on the telephone, "What chances do I have to have another child like this, because I'm pregnant right now.   Six months."   She said, "If I were you, I'd have an abortion, because you have a fifty/fifty chance."   And I said, "You know what?!   That'd be murder."   I didn't think about it for a second.   I just hung up on her.   

Of course, after that, I was afraid to give birth, and I'm telling you, I was pregnant with you forever.   You were due at the end of October, and you came in December.   The doctor understood that psychologically, I wasn't letting you go, and eventually was going to induce labor.   When you were finally born, they took you for the chromosome test right away.   It was a relief for me to know that you weren't handicapped.

You didn't have that pressure with Sophia, but you had that pressure with me?

Oh yeah.   When Sophia was born, I wasn't even thinking about the chromosome. I tested Sophia myself to see if she was normal.   I drove her crazy testing her- clapping here, snapping there- looking for her reaction.   My mother said, "Leave that baby alone!"   But with you it was different, because from six months on, I was really scared I was going to have another baby like Sammy, or maybe even worse.   So what did I do?   I cried.

But if Sammy's the way he is because of chromosomes, then do you still blame the

doctor that delivered him?

I'm not sure about the chromosome test, because I never had one done again on him.  What I do know is that my water broke, I phoned the doctor and he told me to stay in bed.  I didn't go to the hospital for two days.  That had to have an affect on him, because he probably didn't have enough oxygen going to his brain.

What was Sammy like when I was born?

Well, of course, Sammy didn't care for you. Sophia was okay, but there was no room for one more according to him.   He was pulling your hair since you were little.   Ever since you had four hairs, he was already pulling them.   I didn't know what to do to make him stop.   You were always scared and crying.   I would find you under the bed hiding from Sammy.    I didn't know what to do.

Before you were born, I could hold Sophia in one hand and Sammy in the other.   But then I had to hold you, and of course I had to have Sammy's hand, so Sophia would start to cry- "You don't love me anymore!"   It was tough for her.   I told her one time, "What's the best part of the sandwich?   Bread is bread, but what makes a really good sandwich?   What's in the middle! And you are in the middle." Oh my gosh, that was the best thing for her; she used to turn to me, smile and say "Mom, 'the sandwich'.  

When did you decide to send him to Clearbrook (a residential facility for the developmentally disabled)?

For years, I had resisted having Sammy live in another facility. But it was hard.   The social worker used to come and say, "You don't have to cry.   Sammy can live someplace else and you can visit him." I always told her, "Do me a favor, don't call me anymore.   When I need you, I'll call you.   Until then, don't bother me."

Finally, Daddy had a little money that we could spend going to a better place than McDonalds, and I said, "I want to go for vacation," and I convinced him we should drive to Florida, the five of us.   At that time, Sammy was swearing, "F- you!" to everybody.   We would go to a restaurant, and he'd yell "F you!!" to everyone.   You'd start crying, I'd start crying.   It was a mess! When I came back from that vacation, I called her.

Daddy had thought it was a good idea for many years, and I always said, "No and no and no!"   Once, Sophia said, "Daddy, Sammy just doesn't belonged just to you.   He belongs to the family, to me, to mom, to Sabrina.   So let's take a vote." Well, Sabrina voted no, Sophia voted no and Mom voted no.

I bet I wanted to vote yes, but with Sophia staring at me, I wouldn't.

(she laughs) Sophia was so little.   One time, I saw that she was kind of sad and quiet. She asked me, 'If there's a God, then why did he send Sammy?'   I said, "If everything was beautiful and the same, it wouldn't be life.   There have to be good thing and bad things in life. To appreciate the good things, God has to show bad things too.   He chose us, our family, because he knows we can help in this job.   He sent Sammy to our house, because he knew our house would be the perfect house for Sammy.   And we are helping him in his job."   And I believe this.

They didn't expect Sammy to live so long.

The doctors told me that 9 years old would be enough.   They told me the most they would make him would be 19.   So stupid.   He's forty-one now.  

You think Sammy is your angel?

Yes.   Yes he is. 

Are you happy you had him?

Yes.   I feel blessed with him.   I believe I have direct contact with God through Sammy, and I believe things happen for a reason. I completely avoid thinking 'What if's", like "What if Sammy was okay?"  I always took him exactly the way he is.  And I really believe he's a special person.  Sometimes I'm thankful that he's not a little bit better, because he's not conscious of the fact that he's handicapped.   He just loves that song from Mr. Rogers, 'I'm different'.  The kitty cat's singing, "I'm different".  It's a beautiful song.

What do you think is the biggest lesson you've learned from Sammy?

To be patient, you know?  I used to be so strict, so straight, so perfect.   I found out that there are more important things than having a neat house and things in the right place.  Sometimes I say God sent a professor to our house - to teach us patience and to not judge people, to just love and be happy.  Sammy, he hugs everybody.  He has no prejudice.  It's like he see the souls of people, not the outside.  Everybody is the same to him - he doesn't care, he just hugs.  Everyday is love.

Maggie Chapadjiev is a mother and artist. She works with the PADS Center, which assists men, women, and families in Cook County who have become or are at risk of becoming homeless. She was also a volunteer at the Northwest Action Against Rape. Recently, she was awarded Community Spirit award for Elk Grove Village.   She lives in Elk Grove where she works as an aerobics instructor and freelance artist.   Visit her at paintingsbymaggie.com

Sabrina Chapadjiev is Maggie's daughter.   She recently edited, "Live Through This- On Creativity and Self-Destruction" (Seven Stories Press, 2008)- a collection of written and visual essays by women* who've used art to deal with self-destructive tendencies.   She is also the editor "Cliterature- 18 interviews with Women* Writers."   Her first CD is coming out in winter, 2008. She believes her mom is the best mom ever. (sabrinachap.com)

* anyone who's had the experience of being a woman.