Septembers

September 19, 1980. That is when September started to be an important month for our family. It’s when my son Dan was born. Then there was the Labor Day Muscular Dystrophy Telethon. I paid attention to it as a teen, I even volunteered when I was about 16 or 17. Then it was a big part of my life and my family’s life for about 20 years. Labor Day followed by the first day of school. And then, September 11, 2001.

30 days has September – and oh they are packed. Emotional, volatile, happy followed by sad. The weight of September is heavy. At times in past years it has been almost unbearable.
This year it is about writing. I started the month at a writing conference, my first time speaking at one. This September is about writing. Because Dan was born to write and he expected me to do the same. I let him do the writing and he admonished me for “slacking off” – you see he knew I was a writer too. But he let me communicate with my photography. But he knew I had to write too.

Dan-computer-1999
This is a bad scan of a print, but it shows Dan working at his craft, as he did whenever I gave up my computer time so he could have it. He eventually got his own computer, but for many years we shared. And since the internet is all about cats, be sure to notice the Siamese – her name was Henny – sleeping peacefully on the shelf above the monitor. This pic is circa 1998 or 1999.

9/11/2001

After a rough weekend and a tough and scary Monday, we woke up late Tuesday morning and turned on the TV expecting to see the Rosie show. “What’s this? The news? Is this a War of the Worlds type show? Is this live???? That is an airplane flying into the World Trade Center!”

I had already started our morning routine by turning on Dan’s computer and the TV and was getting ready to get him up when we were riveted to the TV. Tired from a rough day and late night, what we were seeing wasn’t making any sense. The computer fired up and we started the programs running, Yahoo Instant Messenger was one of the first we always opened. I took Dan into the bathroom, got him dressed and into his wheelchair, all the while listening and trying to comprehend.

My son Dan and I were in NYC, in an NYU dorm on Washington Square Park. The semester was supposed to start Tuesday September 11, 2001. We moved him there from our home in Rochester, NY two weeks before. Dan has Spinal Muscular Atrophy, a motor neuron disease that he was born with. He never walked or was able to bear weight, and had been in a power wheelchair since his teens. Before that it was a manual wheelchair.

Dan was a writer and had already spent a year at Hofstra University studying Journalism. But his passion was writing screenplays. He had applied to NYU’s prestigious Film Writer’s program and had been accepted. Everything was supposed to be set up with him having personal aides ready and available for him like he had at Hofstra, but there was a glitch and the school hadn’t gotten that set up. So I was staying in the dorm room with Dan while we got things straightened out.

In the meantime, we had to go back to Rochester and get his brother Chris, who also had SMA and move him into a dorm at Hoftra. He had the same room and personal aide as Dan did the prior year, so his move went a bit smoother. Chris and I also showed cats, and the weekend of September 8 and 9, 2001 there was a show near Washington, DC. Dan’s girlfriend lived in Baltimore so it worked out that we could all have a fun weekend before they got immersed in school.

Now if you have ever parked a car in NYC you know that it is expensive and not at all easy. So once we realized it was going to be a possibly a few more weeks before they found Dan an aide, I decided to drive the van we had back to Rochester, and fly back. The timing on this was pretty crucial because Dan would be alone while I was driving and flying. The timing looked fine, it was 5 – 6 hours to drive to Rochester, there was a Jet Blue flight at 8 pm from Rochester that would get me back to JFK by 9:30, and a shuttle would have me back at the dorm by 10 – 10:30 pm.

I left Dan with food, TV remote and drinks – he had a small refrigerator with a microwave on it all set up within his reach. His room was pretty well set up for him, so the only issue was hopefully he wouldn’t have to go to the bathroom while I was gone. We really didn’t know anyone in the building yet, so he had no one to call if there was a problem. So there couldn’t be any problems, right?

I left somewhere around 9 or 10 am and the drive was smooth. No traffic or construction issues. So far so good. I packed up some extra things to have with me, books, notebooks, things to work on. I didn’t have a laptop yet, and didn’t bring my desktop computer, I was going on a plane after all and shouldn’t need to be in NYC too much longer. I got to the airport and the flight was delayed. That was going to be a problem, since we had this all timed out and I had the shuttle reservation and Dan was alone. I called and let him know.

At the airport it got scarier, I started to freak out. They were talking about the weather and the possibility of canceling the flight. That was unacceptable. Just when I was about to start looking at other airlines they called us to board. We left at around 9:30 pm, when I was supposed to be landing. But at least we were on our way. Except once we got to JFK there were still weather issues plus all the other delayed planes that needed to land. We circled. And circled. I started to panic again. What if they sent us back to Rochester? What if there wasn’t a shuttle available once we landed? I hadn’t been in NYC long, I didn’t know about the endless supply of cabs or the fact that you could get a shuttle from the terminal. I also didn’t really know how far it was from JFK to the dorm.

We finally landed at around 11. I was still panicking about the shuttle, but was able to get on one fairly easily. I told the driver Washington Square because I really didn’t know my address. It was Goddard Hall but of course the driver had no clue where that was. We went around the terminal and picked up other passengers and finally headed out. I was still pretty freaked because Dan was alone for a long time now and I didn’t know who was being dropped off where and how long it would take.

After an interesting drive out of Brooklyn to Manhattan, the driver stopped at the base of the Twin Towers, near the Hilton hotel on Washington Street. I looked up and said to myself that I would be back since I hadn’t gotten to the top of them yet. We all looked around to see who was going to get off and the driver looked at me. I said no, I’m going to Washington Square. The whole shuttle groaned and the driver slammed the door shut and started up the street. It was 12:05 am on September 11, 2001.

It was 12:30 or so when I was dropped off at the dorm. Now even more fun ensued. I had no ID that said I should be there, Dan’s cell phone battery had died and he couldn’t get to the room phone apparently because when the security guard called up he didn’t answer. So here I am standing in the lobby of a dorm at NYU with suitcases, drenched from rain, my son is on the 3rd floor and I can’t get to him. I don’t remember when she finally let me go up, I remember trying to explain that Dan was handicapped and had been alone for over 14 hours and he needed me to get to him. It got heated. I was very upset. I told her to go up and see for herself but she was alone and couldn’t go up. It took about an hour for me to convince her to let me go up. I think she finally called someone to go with me, all I knew is that I needed to get up there.

Once upstairs, Dan was fine but he wanted something to eat so I went back out, checking with security that I would be able to get back in. There was a 24 hour deli on the corner, as there is on most Manhattan corners. I got the first of many orders of chicken fingers and fries, we ate and finally settled in to bed at 2 am or thereabouts. We were both pretty tired.

Computer is on and Yahoo messenger is pinging away, we’re still trying to figure out what is going on on the TV. I look at Yahoo and Dan’s sister Liz is frantically trying to get ahold of us to see if we are ok. The events of the morning start to unfold. She tells us that they have been trying to call us, sure enough the phone neither the room phone or Dan’s cell phone are working. We’re kind of surprised that we have internet, but that is because NYU has it’s own intranet. This was how we were able to stay in touch with the outside world.

We didn’t know where we were in relation to the Twin Towers. We were at West 4th Street. The fire alarms went off. Out of the building we went. It was a drill, there was a head count, all students had to be accounted for. No one knew if we should stay inside, if we could use the air conditioners or if we should have the windows closed. No one knew how close to the Towers we were. I remembered the drive from hours before and didn’t think it was that far. And I was very glad no one got off the shuttle there.

I still don’t really know if we saw the second plane hit live, time was all scrambled up. We watched the towers fall on the TV. We knew we had friends in places they were talking about, like Tribeca. Dan went downstairs to take a look around while I stayed up talking to Liz on Yahoo and watching the TV. He came back up and said he couldn’t see anything down Broadway so figured we were pretty much ok. I went out a while later and we walked to Broadway and he turned towards the north and said “See, nothing there.” I looked south and froze. “Dan, turn around.” He spun he chair towards where I was looking and we both stopped breathing for a minute. There was smoke billowing from what looked like just a few blocks away.

And it was quiet. The subway had stopped. There were no airplanes in the sky. No cars clogging the streets. We were in the middle of 3 major airports, there were always planes. Then we heard them, F-16s screaming by. And suddenly Broadway was lined with buses with their motors idling. They were parked there ready to go get the survivors and bring them out of the area. They never moved.

Cars, black cars with sirens and lights inside them, unmarked black cars all going in one direction, south. The wrong way on Broadway. Occasionally one covered in heavy gray dust would come north. People were walking with masks on their faces covering their nose and mouth. We even saw dogs with the masks on.

Dan went back inside, there were obviously no classes that day. We heard that below 14th Street was closed. No one could come in, we could leave if we walked up there, but we had no ID so wouldn’t be let back into the area. That was 10 short blocks away. We were in lock down.

I walked south. To see how far I could go. As a photographer all I could think of was this was history in the making and I had to see what I could capture without getting in trouble. The Mayor said anyone below Canal street with a camera would have their camera confiscated. I didn’t know where Canal Street was from where we were. I want to say it was about 10 blocks.

Something My Daughter wrote in 2002

My daughter Liz did a google search on her name, which we do from time to time. She found a post she made on a site that had an email address for her that neither of us remembered. I put the domain into Archive.org and not only did she own the domain way back when, but it was a site for parents that had children with disabilities or that had lost children. Here is her about us page, I didn’t even remember she had gone public with this. I had written a short story about her child that died, I will have to look it up now. In 2002 I was deep in grief over the death of her brother Dan and was in NYC trying to cope and had her brother Chris living with me, but I am amazed neither of us remember her starting this site.


About Us

I’m sure many people may wonder why I would put together a site like this. I would like to share with everyone my story and my personal reasons for why I saw a need for Parenting By Parents.

I grew up with 2 brothers with Spinal Muscular Atrophy. It was hard since I was the oldest and ended up taking on much of their care. I remember when my parents had to fight the school district in 1984 to allow the older of the 2 to go into a mainstreamed Kindergarten class. You see, although they were in wheelchairs, their form of SMA does not affect their minds or intellect. Obviously things have changed, and the public has become slightly more aware when it comes to people with disabilities, but that does not mean that they understand.

When I was 22, I found out that I was pregnant. I was an unmarried soldier at the time and was scared. Luckily I found the right man just before my world would start to come crashing down. I went through all of the normal tests that you have done during a pregnancy and found that there was the possibility of a chromosome disorder in my baby. No problem, I had volunteered and worked with kids my entire life with various disabilities. I knew what would be involved, but had the test done to see if we could find out exactly what was wrong so that I could be better prepared.

I was told that there was a defect linked to the male chromosome, that would’ve likely been passed on from the father. Unfortunately, I no longer had contact with the father and couldn’t let him know. All they could tell me was that the defect may or may not affect my child once they were born.

What I did not know was that chromosome defects can sometimes cause premature labor. I went on a trip to Florida to meet my husband’s family for Christmas. When we got back, I went back to duty. I hadn’t been back for a week, when the trouble began. I started spotting and immediately when to the post urgent care center. They ran some tests, told me everything was fine, but hooked me up to an IV and sent me to the local hospital. At this point, I knew that they weren’t being honest when they told me everything was fine. The military doctor on call met me at the hospital. I was dilated 2cm and had already ruptured membranes. They needed to get me to the hospital in Syracuse, NY immediately as they were not capable of the preemie care that would be necessary if I gave birth that night. My husband was told to stay home as there was a bad snow storm and to meet me in Syracuse in the morning. I had to spend that night, my first ever in a hospital, alone.

When I got to Syracuse they adjusted my bed so that I was laying intrundel to relieve some of the pressure on my uterus and hopefully stop labor. I was not having any contractions, which was scaring everyone. I remained like that for a week before they decided to let me lie normal and allowed me out of bed to use the restroom. Boy was that a mistake. The first time I got up to use the bathroom, I sneezed and ended up pulling the emergency cord. I could feel my baby’s head!!

The nurses all came in, they sent in an intern to examine me and I was told, yes, they could see the top of the baby’s head but everything was fine. And back to bedrest and intrundel I went. Well, this naturally didn’t sound right, but who was I to question them? This was my first pregnancy!

Now as I said, I wasn’t feeling any contractions, so they would periodically hook me up to machines to monitor whether or not I was actually having any. About a week later, January 15th, 1999, I was on that machine and a nurse came in. There were no contractions being monitored, but she noticed that there was a drop in the baby’s heartrate, so she got someone in there immediately. Upon examination we learned that I was dilated to 10cm! My husband and family had just left so they got me a phone while they were prepping me for delivery. The last ultrasound had shown the baby was still facing the right way.

I called my mom and my husband then tried to prepare myself. We found out the baby was breached so they chose to do a C-Section. I was only 24 weeks along. Once they started the C-Section they realized that my poor son was stuck in the birth canal and they had to do the old fashioned T Cut in order to have enough space to get him out. He was rushed immediately to the NICU. He was bruised all over his poor body. My family arrived while I was in recovery. I was shaking in pain from the contractions that they had to induce after the surgery, and it was too soon for them to give me any pain medication.

Aaron Bruce Ababon survived for just 8 hours. His father and grandmother each held him, although I never got a chance to. He was so small that with the amount of morphine I was on, I was scared I would drop him.

Just 3 months later, I lost my aunt Kathy Jean to cancer. She had survived far longer than we expected, and we all believe it was because she wanted to see her first great-nephew born.

Later in May of 1999, I learned that I was pregnant again. Although I had ultrasounds every 2 weeks, it was a much more pleasant experience and Alec Gene Ababon came into this world Feb 2, 2000.

Alec is a very healthy, happy 2 year old now. Someday we shall tell him of his “older brother.”

During this time, my 2 brothers with SMA left for college. Dan, the youngest went to Hofstra University and later got into New York University’s very prestigious dramatic writing program. Chris went on to Hofstra when Dan went to NYU. Dan spent 2 very happy semesters living his dream come true. He was a finalist for the Emmy Internship that he wanted so badly in Los Angeles, had many scripts in various contests, and suddenly late Sunday May 12th my mother got a call that her 21 year old son had been a passenger in a car accident and was being taken to a hospital in New Jersey. They believed he was fine, although he had been thrown out of his wheelchair through the back window of the van. She told the hospital of his disability and made sure they were aware of his needs. She was leaving NYC on the very next train to get there. Within the 2 hours that it took for mom to get to my brother on May 13th, he had died due to aspiration on the cat scan table.

That is another day that will forever live in my memory. I was awoken at 5am by the doorbell. They had been trying to call me for an hour to tell me that my fuller than life itself, 21 year old brother had been killed. The next days were a blur as I helped my father make the arrangements since my mother was still in New Jersey handling things down there.

Daniel was a role model to the many people with disabilities that he came into contact with. NEVER once did he allow the fact that he was in a wheelchair stop him from doing anything that he wanted to do. He was truly living his dream until it came to a crashing end.

Today, my brother Chris lives in NYC with my mom and I am working to get this website up and running so that it can help others. I am a Work at home Mom to Alec and wouldn’t dream of doing anything else!

Diabetes Supplies – It Shouldn’t Be This Hard

I have to rant – sorry… but this is really bugging me. I was recently diagnosed with diabetes, the “real” kind, not the “change your diet and you’ll be fine” kind. I get a glucose meter from the Dr. and prescriptions for the lancets and the test strips. Head off to the pharmacy. The lancets are covered by my insurance, you know what those are – you stick your finger with a tiny needle so you can get a drop of blood. So I have the meter and I have the lancets. But wait! The test strips (the thingys that the blood goes ON and goes in the meter to let me see what my glucose level is) need a prior approval. Okay, so I can prick my finger and I have the meter but can’t get the blood to the reader. And what do you know…. the insurance company didn’t approve the strips because I “hadn’t tried something else first”. Really???

So my pharmacist, being the great person she is, calls the company and asks what brand IS covered. We get a prescription from the Dr for those. We thought. That brand required prior approval too. Now I don’t know about you, but once I know I have to track something to be healthy, I want to track it! We are a week past getting the original prescriptions from the Dr and I still don’t have test strips. It gets better. Pharmacist gets on the phone again, bless her soul… she figures out what they will cover and the prescription is written in a way that will let her fill it with those test strips. BUT the insurance doesn’t cover the METER now. Because you get those from the Dr usually. I can call and have the manufacturer send me one…. but for $25 I can just buy one.

How dumb is it that I can get the lancet’s to prick my fingers and the meter to read it and I can’t get test strips covered? How many people don’t bother to follow through and get all the supplies they need and are not able to check their glucose levels? I’m not going to die from diabetes any time soon as long as I take care of things, but if other folks don’t be bossy or persistant, they *could* literally die from the consequences.

Flowers With Wings: New Photo Book Series featuring Butterflies

Photograhs of butterlies with quotes and butterfly poetry Butterflies have always fascinated photographers and writers Deborah Carney and Vinny O’Hare. In this series of books features their photographs of butterflies with quotes, proverbs and poetry about butterflies.

A Butterfly Lights Beside Us

A butterfly lights beside us, like a sunbeam…
and for a brief moment it’s glory
and beauty belong to our world…
but then it flies on again, and although
we wish it could have stayed,
we are so thankful to have seen it at all.
~ Author Unknown

All our butterfly photographs are taken of live butterflies in the wild or in sanctioned butterfly conservatories.

Buy Flowers With Wings – Volume 1 for the Kindle

Read Reviews for Flowers With Wings ~ Add a Review for Flowers With Wings

Poetry and Peonies: Photo Book Series Volume 1

Photography eBook: Poetry and Peonies Volume 1: Japanese Tree Peonies
Photography eBook: Poetry and Peonies Volume 1: Japanese Tree Peonies
Peonies have always fascinated me, from the bushes that grew in my Grandmother’s garden years ago to the tree peonies I recently discovered in the Botanical Gardens in New York City. They are so colorful, so playful and yet so serene.

I can, and have, spend hours just looking and drinking in their solitude and beauty.

This book is the first in a series and even though it isn’t all poetry, I hope you will give me poetic license to include quotes and words that are inspirational to me, and hopefully to you.

This book has full color photographs when viewed on Kindle apps or on the Kindle Fire, and the images are also beautiful in black and white when displayed on devices that don’t support color.

Currently available on the Kindle, coming soon for the Nook. Don’t have a Kindle? No problem! There are free Kindle Apps for your PC or Mac, plus other devices. Check the Amazon Kindle store to find out your options.