Deborah Carney

Where I Celebrate Life

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!

Kathleen…

My beautiful baby sister Kathleen was such as inspiration to me. She was several years younger than me and I learned later in life that she was mostly afraid of me as kids. Our parents got divorced when I was a teen and my sisters were still very young. We all adored our dad, and mom was not an easy person to live with. When I turned 18 I moved out and my sisters left my mom to live with our dad. Kathy being the youngest was the most confused and upset by the divorce and the ensuing years. I got married at 19, pregnant at 20 and suddenly at 15 Kathy was pregnant too. She married the baby’s father, even though he was not a great person, but he had shown her affection so she thought it was love. He was a drug addict and one of Kathy’s best friends was a hooker. No, Kathy didn’t go down that road. She left her husband after only a few months and moved back in with our dad, when I asked him why he let Kathy get married he said that kids needed to learn on their own and make their own decisions. His most favorite thing to tell people was “use your common sense”. His story is for another day…
[Read more…] about Kathleen…

Reach Into Your Heart

You tell yourself you are successful. You are a successful webmaster, successful visual artist, successful Doctor or teacher. But deep in your heart there is something you would love to do, that you do secretly or that you only dream about because doing “it” would expose a vulnerable side to yourself. You call it a “hobby” or you don’t even tell people about it for fear of failure or ridicule. Maybe you write music or you play a guitar, or you draw or sing.

It’s time. It’s time to reach into your heart and face that “thing” that you are afraid to do and just do it. Because you don’t want to run out of tomorrows before you show the world that specialness that is the real you. You will be surprised at the support you will get and how great you will feel. Just because the world “sees” you only one way doesn’t mean they can’t handle seeing another side of you. The people that reach into their hearts and pull out the real them are the people that inspire me the most.

Happy Dancers and Inspiration

I’m standing in a bar in Brooklyn, listening to a band I have traveled across the country more than once to see, near the 5th anniversary of one of my sons passing. The lead singer looks into the crowd and says “Don’t be afraid of the Happy Dancing, everyone can be Happy Dancing.”

She then went on to continue to sing the next song and the “happy dancers” were stomping and jumping and body slamming each other. They were inspired by the same woman that inspired me a few years ago.

In late June 2007 – a wonderful man sent me the link to a video of the opening act for Joan Jett, playing on the Hudson River in NYC – he left a message in IM before he left for the show because I had a bad day, I had fired someone – said “because your awesome” – linked to YouTube video of “Because I’m Awesome”.

People tell me I’m an inspiration to them, I’ve been told that for about 30 years. It was 30 years ago that I was told that my sons had a genetic condition that would mean they would never stand or walk and that their life span was teens to early 20s.

One, a writer that inspired everyone around him to be better than they were, encouraged me to write and follow my passion – photography and the dream to have a gallery someday – I have an online gallery, but it’s a gallery. I stopped writing because he was the brilliant writer, not me.

The older one that inspired everyone around him because no matter what he lived his life the best he could, rarely complaining about the constant pain he had to be in, his acceptance of people as they were and the drive he had to be an actor. He was an actor online, playing role playing games featuring medieval characters that he created, with animal roles that were incredibly detailed and making friends around the world.

I have a confession to make, I don’t inspire anything. It’s my children that inspired me. The boys for their living life the best they could, their sister for being there for me and for them. My children were my reason for living, my anchor, my inspiration. When the boys died, it took away my reason for being. Liz and my grandson are very important, but it wasn’t the same, they didn’t rely on me for their life to go on. They had their family. Dan and Chris relied on me for pretty much everything. To get up in the morning, to go to bed at night. There were other people around that helped, Liz, their Dad (we were divorced), their cousins, their girlfriends. But it was my perceived job to be sure they were always ok, there was someone there if I wasn’t. I lived with Dan in a dorm room at NYU on Washington Square for the 10 months after 9/11. When he died in a car accident, his brother immediately rejoined me in NYC (he had been with his dad for a couple of months) and we moved into a ground floor apartment in Astoria for a year.

I got credit from people for being a strong woman that raised them right, that allowed them to be as much as they could be. We were an active family in the community, raising funds for research, attending events and Liz talking about living with disabled siblings, about the boys being in school mainstreamed with the other kids. Both my sons dropped out of high school in 10th grade. Why force them to live their short lives dictated by the rules of a bureaucracy? They both went to college, by their choice, not dictated by society. They inspired by example.

Dan was online meeting people virtually around the world and didn’t tell them he was 16 or 17, didn’t tell them he was in a wheelchair, didn’t tell them anything, just showed him his personality and his work and his words. Chris was online meeting people, creating worlds to live in where there were no wheelchairs or restraints. He was in the college plays, they made sure the plays they choose had roles for him.

They both started going to live events and meeting the people they only knew online, they had to start admitting their ages and their restrictions. By then no one cared. Because they knew the people that they were. I was just the able bodied person that got them where they needed to be.

In a bar in Brooklyn on a cold March night, a beautiful blonde angel made me realize what was missing, why even though my life is good now, it still wasn’t “right”. Missing Chris and Dan so much, unable to do the things I wanted to do, something stopping me. When Kelly sings, she inspires people to react. To have fun. To Happy Dance. Good musicians do that, good writers do that, good actors do that. Kelly does it, Dan and Chris did it. Without them to inspire me I’ve been floating, working without purpose, just doing the jobs I was good at, helping people along the way. Kelly showed me that persistence pays off, you do what you really love to do and it will inspire people.

I needed to realize that in order to be able to fully realize that it’s time for me to go out there in my way and inspire people. Stop letting barriers be in the way. For 34 years my children were my life. I love the work that I do, but things are top-heavy or something. I need to keep doing what I do, for the people that rely on me, but I need to also reach into doing what I need to do for me. That sounds corny, but it’s true. I have tried several times to make myself write. People tell me they are inspired by my stories, but I just tell them, I don’t write them.

I have a thousand stories, I just have to figure out where to start. I think it might start on a cold March night, in a bar in Brooklyn, where 11 years ago I could have never imagined being, with a wonderful man by my side and an angel singing that touched my heart, and in that moment I understood.