Sunday, February 10, 2008

A Parents Greatest Fear (can also bring Joy)

Back in 1962 I don’t think there were many tests to determine if your baby was going to be “Downs Syndrome” or not. And if there were, I don’t think my mom would have taken one anyway.
No, at 45 years old I think the doctors may told her she was taking a chance, but knowing my mom I don’t think she thought about it twice.

You see, I was the “second” boy, and it’s ok, I was already told years ago that I was supposed to be the “girl”. Yes, my arrival caused a little disappointment, and from what my mom told me they were going to name the girl ”Ronny” anyway. So there you go. Buy hey, all six foot three, 210 pounds of “Ronnie” can take it, and let me tell you, I’d make one hideous looking woman anyway.

So while I was sitting in my playpen, and staring through the bars at my parent’s bedroom door, they probably had other things on their minds. And I’m sure it was something “pink” after two “blues”.

So one day my mom told me she was going to have a baby. I was about five years old at the time and really excited. I remember drawing pictures in school of my new little brother or sister in my classroom at PS 179. I just couldn’t wait while my brother Joseph just couldn’t care less.

Then one day my Grandmother Isabel picked me up form school and told me that “mommy” had to go to the hospital to have the baby. Once again I drew more pictures while my brother Joseph started building a “cage”.

So the day finally came when my mom had the “new” baby, that was February 10, 1962. But something seemed to be wrong. I remember being downstairs in my grandparent’s apartment a lot while the baby was upstairs. Even a five year old noticed something was not right. A lot of grown-ups crying, a lot of closed doors. All I wanted was to see my little sister, that’s all. And I just couldn’t understand what
was wrong.

I couldn’t imagine what went through my mom and dads minds when the doctors told them that their daughter was retarded or “Downs Syndrome” that February 10th back in 1962. What started as a day of excitement and happiness over at Methodist hospital in Park Slope ended up one of the biggest nightmares any new mother can have. Learning at delivery that there was something “wrong” with their child. Learning that the “odds” that were in your favor, had somehow turned against you. What have I done to deserve this?, is all you ask.

“You know these children don’t live very long either” one doctor told my mom. Maybe 12, 13, but not much longer. “A lifetime of commitment” was another line spoken many times that day on
7th Avenue in Park Slope. My moms world was turned upside down
in an instant, and all she kept asking God was “what have I done to
deserve this?”.

I was told years later that the reason why they didn’t bring her down to me sooner was that there was a great divide in the family about putting her up for adoption or not. I know that was never what my mom wanted, nor my grandmother Isabel Lopez. No one born into their family would ever be forsaken. And especially no one named after my grandmother either.

Then the day finally came. “Ronnie, I want you to meet your new little sister “Isabel”. To this day I still remember how tiny and beautiful she was, and her eyes. I just loved my sister’s eyes. They were the most wonderful big eyes I had ever seen.

I don’t think I ever really knew there was anything “special” or as you folks may say “wrong” with my sister. You see she was always quite “normal” to me. Well, she may have learned to walk at five and drank her bottle until she was seven, but other than that how was I supposed to know? No one ever really told me anyway.

Oh, right, the hugs. My little sister just loved to hug us all the time. And when it came to pure love and innocence, I don’t think you could have found anyone more innocent than my sister Isabel.

The laughter, oh right, the laughter. My little sister Isabel had the most wicked sense of humor and just made the family laugh all the time. So besides that, how was I supposed to know she was different?

And somehow she was just always the center of attention too. Even in her class at PS179, PS 230, PS130, PS10, PS so on and so on. You see back in the late 60’s through the 70’s there were really no schools dedicated to these children. Most of the time they just bounced around from public school to public school. But whatever class my sister was in the other kids would always kind of “gather around” her to hear what she had to say. So besides that, how was I supposed to know she was different?

I guess it was the looks from other people when my sister walked by that opened up my eyes to her being different. Plus the fact that she was extremely overweight as a teenager and young adult. Sometimes when we took the F-train from Church Avenue together I would notice people staring and laughing at my sister. Many times they never knew I was with them. One time on the F-train I whispered into a mans ear that I would “break his neck and kill him” if he laughed at my sister again. He got scared and walked into the next car. Gee, its amazing what an effect a 6’ 3” person could have on someone, especially with a long black leather coat, a beard and dark glasses. Boy, I miss those days.

And then there was the music, Isabel loved to stay up late and rock the house with her boom box on a Friday night. Just the thumping sound of the “beat” from the top floor of 399 East 4th till the wee hours of the morning. “Hey brother this is my apartment, go to your girlfriends house, sucker”. I could only laugh, as she’d scream these words in my ear after a late night out in the city with the guys. Too drunk or tired to answer her, I’d just go back to sleep. Only to be awoken by a glass of water being poured on my head by Isabel a few minutes later. You want to know why I can sleep through anything? I had a lot of training sleeping through “Michael Jackson, Air Supply, Kiss, and more, all cranked up to the highest level on her boom box. So besides that, how was I supposed to know she was different?

My sister was always sick a lot too. She used to sleep sitting up. “These kids have a lot of respitory issues,” Doctor Gilner once told my mom from his office at 303 Beverley. Plus the days missed from school, one year Isabel missed something like 225 days of school. I just couldn’t stop laughing when I read her report card.

And my mom?. Well, my mom was the luckiest mom on earth. She had a child that loved her to no end. A child whose mind and soul were as pure as a new fallen snow. A child who was her greatest companion for 32 years. Without my sister my mom would have most likely jumped off the Brooklyn Bridge after her husband and son died four years apart.

Now my sister was always getting sick, and that morning on June 17, 1994 seemed like no different from the rest. But what made me think was the words she said after she vomited for about the millionth time in her life. Instead of telling me to “leave her apartment” Isabel said; “Ronnie please don’t leave me”. So I stayed there next to her that night to make sure she was OK.

When my mom woke up that morning a quick call was made to my sister’s school “ACRMD” up by Bishop Ford in Windsor Terrace. Just another sick day for my sister is all we thought. So I helped my mom for a while and then went off to work. But the rest of the day went tragically wrong. Isabel couldn’t breathe, calls were made to 911, firemen, emts, and a hospital bed at Lutheran. When I got a call at work that afternoon it all sounded pretty grim.

I remember the looks on the doctor’s faces when they approached us in the waiting room. You could always tell when someone has “bad news”. The nurse just said she would light a candle for my sister that night. It all just started to unravel. And all along my friend Tommy Brennan was there with me while my mom just sat there in shock. I remember watching the “OJ Simpson low speed chase that night on the TV in the waiting room. It was the night of June 17th 1994. It’s funny the things in life that make you remember certain events.

It was just getting so late for my 77 year old mom, so we decided to take her home. We kissed Isabel on the forehead and told her we would be back in the morning. She gave us the “thumbs up” and said she loved us. That would be the last time I would see her alive.

Oh, those 2:00 AM phone calls, there never any good. My mom’s world ended on June 18th 1994, Isabel died at 1:44 AM.

He companion, her child, the love of her life was no longer with her. Another child was buried for my mom.

So the “beat” was silent and there were no dance parties coming from the top floor of 399 East 4th. The house lost its soul, my little sister was dead. My mom's daughter was gone, and she would grieve for what seemed an eternity. Things just weren't the same anymore at 399 without Isabel, and also at her school where her classmates cried every day.

I think my mom didn’t smile or laugh for about a year. I remember being home when I heard her laugh for the first time in almost twelve months; it was during the “Prairie Home Companion” show on NPR. I gave my mom a big hug and told her Isabel would want to her her laugh again too. My mom just smiled and told me she knew she would see her again when she died. “Of course you will” is all I said. I knew my mom had finally made it.

Whenever I see the parents of a “Downs Syndrome” child, I never feel bad for them. Because I know that child will show them more love than anyone “normal” ever could. The little things in life that most take for granted would all seem so glorious and wonderful with their child. My sister taught the entire family to appreciate the advances in life that we would have never even thought about without her. And boy, did she teach us how to hug.

Her “garbled” speech also gave me a gift. Isabel never really spoke that clearly and when my kids were learning to speak it helped me pick-up on words they were saying that most couldn’t understand. My wife called me the “baby whisperer” and also thought I was full of shit. But I’ll translate any “baby talk” to the finest English any day of the week, I kid you not.

So there you go, the story of something tragic that actually ended up being magical for everyone who knew my sister Isabel. Our greatest fear ended up becoming our most cherished joy. Why is it that what most think of as a “burden” to them, can actually be the greatest gift to someone else. I guess you can call it a big “misunderstanding”, nothing more.

And if you never met a person that couldn’t care less about his wife’s amniocentesis result you may actually know him after all. Because he had a "Downs Syndrome" sister, and he knew the truth about what most parents fear the most. A fear that can certainly be your greatest gift. Because we had ours you know, and her name was Isabel Lopez.

Ron Lopez

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Anonymous said...

What a beautiful post. I'm left with a wad of wet tissues. You're so lucky to have had such a wonderful sibling.

Dan from S.I. said...

One of the most touching things I've read in a long time. May your sister rest in peace.