Deborah Carney

Where I Celebrate Life

The Day Your Child is Born

The day your child is born you know your life will change. Sometimes you don’t understand the depth and breadth of that change and that might be a good thing. If we knew where life would take us some folks that don’t think they are strong enough might decide to not take that path.

At 18 I told friends and family I would never have children, I would never get married. At 19 I was married and at 20 I was a mom. At 24 I was a mom of three and 2 were physically disabled with a genetic condition called Spinal Muscular Atrophy.

I woke early July 18, 1978 – my due date was 3 days prior. I had contractions but at strange intervals. 10 minutes, then 5, then 2, then back to 10. Not horrible but enough to call the Doctor and head to the hospital. We got settled in and around noon the dr said we can wait or we can induce. We decided to induce and get this party started. I was in labor all night with my first 18 months before and didn’t want to repeat that experience.

Dr said great – it will be a few hours so I’ll be back later. They induced at around 1:30 and you were born at 2:20. With a different doctor although he was from the same office. All went well and later when my doctor came to see me he said “I didn’t think it would go that fast!”. The doctor that delivered Chris came in later that evening after my husband went home and he said “You need a glass of wine”. At that time in my life wine gave me heartburn so I passed on that offer. But he might have known something intuitively that I didn’t know yet.

Ironically the day Chris was born we got a letter from our beloved pediatrician that she was leaving pediatric general practice to go into pediatric psychiatric practice. We were devastated but as luck would have it she referred us to a wonderful pediatrician that wasn’t accepting new patients. It ended up being a perfect match for us. Dr. Richard Darling was one of the best constants in our life in the years to come.

All went well, better than with big sister Elizabeth that had an issue with a muscle in her esophagus that made her projectile vomit after every bottle. She was over it by the time Chris was born, once she was on solid food all was well.

We bought a house, a two bedroom apartment wasn’t big enough. It was a small cape cod style. The night we moved in Chris became very ill. His temperature was 104 and he was only 7 weeks old so that scared us significantly. We went to the ER of the hospital where he was born only to be sent to a different ER because they didn’t have pediatrics.

This became one of the scariest nights of my life. My husband went to park the car after we were put in a room. They gave me ice for Chris and the nurse left. There were no cell phones back then – it was 1978. Once you were in a room in an ER you didn’t think it was ok to go wandering around. After a fairly long time I started hearing talking in the adjacent room. Please remember I am in a room by myself with a 7 week old baby that I think might die because no one is coming to check on us and his temperature is so high. I hear the conversation in the next room and it is the doctors telling a family that their son didn’t survive a car accident. Little did I know then that I would be the one in another hospital with another son hearing those words. That is a story for another day.

My husband returned to the room finally and explained they wouldn’t let him back in because of the car accident victims being brought in and the ER was on lockdown. A nurse and doctor finally also came in and Chris was admitted to the hospital. He hadn’t had a bottle in hours and they were worried it might be meningitis so didn’t want him to have too much fluids. However they did give me a bottle and that baby sucked the whole thing down in one gulp! Once Chris was settled in the ward they told me to go get some rest, back then they didn’t encourage or even hear of, parents staying with their children in the hospital. It is the ONLY time I left my child alone in the hospital.

Over the course of a few days they determined it was probably viral meningitis and I would know for sure in a few weeks but that it was safe to take him home. He was weaker than before he got sick and we were concerned but after a couple months he started to get his strength back. In the following months I had a miscarriage and life was pretty busy. Chris had started to regain his strength then stopped. He pulled himself to his knees, crawled, sat up and that was it. Never stood up. They were still blaming his illness.

Finally my pediatrician decided it was time to do some testing and Chris was admitted to the hospital for a couple of days so they could do spinal taps, blood work and collect urine – from a baby none of those things are easy. Since we were at a teaching hospital we were included on rounds for the neuro doctors because there was something they didn’t understand about Chris. They were going on the assumption he was partially paralyzed below the waste however he could wiggle his feet. Picture 10 doctors and students standing around your 16 month old son staring at his feet. It was fairly comical at the time.

The tests came back and Chris didn’t have meningitis at all when he was 7 weeks old. He had Echo Encephalitis. It acted like a polio on his system. We started physical and occupational therapy. Then I got pregnant with his brother Dan and that healthy baby got to 8 months old and couldn’t stand up either. At that point more tests were ordered and we found out what they both had. If I didn’t have the miscarriage and have Dan I don’t know how long it would have been before we found out what Chris really had. I already told a lot of that story in this article about how I used the internet to find out more and about how we used technology to make their lives better.

Through the years I supported my children in anything they wanted to do. We traveled, we advocated both loudly and quietly. When Chris was in kindergarten he had a surgery that required him to lay flat for several weeks. We rented a reclining wheelchair that allowed him to be flat but mobile and his teacher had him come to school in it. I flew to California multiple times with both boys. That will be a post of it’s own, flying with 2 young men that can’t sit up with power chairs that the airline screwed around with…

They had friends whose parents made sure Chris and Dan could get into their houses. When Chris and I traveled when he was older we had friends that made ramps so he could get into their houses. No one felt sorry for either of my sons. They lived their lives on their terms and people loved them as they were.

Children change your life the day they are born. Some more than others. The day Chris was born a life was set in motion that would take the word “normal” out of my vocabulary. But there is absolutely nothing “wrong” with not being normal. I wouldn’t trade my life with my children for anyone else’s.

A couple more articles about my boys:

How the Internet – Not Yet the WWW – Helped Me Find Info on My Sons’ Disease

For Chris

Looking Back as I Turn 60

I turn 60 in 11 days. On my 50th birthday I sat in a restaurant in Las Vegas with a friend and his son. Friend didn’t understand why I wanted to go out for that particular birthday and then it hit him. I lived alone at the time, having moved to Las Vegas after a few tumultuous years of losing two sons and the life I knew. I had gone from being the gregarious hostess of all parties and lover of fun to living on the opposite coast of where I lived the bulk of my life. I had few local friends. I didn’t care about that. I cared about living far from where the pain was. I didn’t want to live where there were constant reminders of the lives lost. My Dad, my Sister, my sons Chris and Dan.

I wanted a fresh start with no daily reminders and driving by places we lived and loved. So when I was 49 I moved to California, then Las Vegas. But I did miss something from the East. My daughter, grandson and my cats. The cats had not come with me because at first there wasn’t really a way to get them there and I was living in a hotel. I moved rather quickly when Chris died. I got on a plane after his funeral and never went back. My daughter Liz took care of the cats.

I had moved to California for a job. My dream job. I loved it. Then the direction of the company changed, Chris died and I said enough. And I left California the week after the moving truck from New York had finally showed up with some of my stuff. I repacked and moved to Las Vegas. A beautiful home overlooking the valley where I could see both the mountains and the lights of the strip. When you live in Las Vegas area you don’t go to the strip often, but you love looking at it. It makes you feel connected to people. You know there is a whole world of people – mostly visitors passing through – but people nonetheless. You can go and be among people without having to actually interact or be around them long term. It was a nice, anonymous way to live. For awhile.

Liz and Alec came to visit. They fell in love with the area. It was time for them to move as well. They came a few months later, with my cats. The cats finally were living with me again.

In the meantime I met a man and fell in love. He lived in NYC but loved Las Vegas and visited frequently. We were friends from an online community, we met in person at a conference, had a long distance relationship and it was totally awesome. Then the landlord visited one day with the news that he had to sell a couple of his houses and the one I lived in was the nicest with the best view so it was going to be sold first.

My time on the west coast and in the Nevada desert was about to come to an end. I moved to NYC to live with Vinny, driving cross country in August 2008 with a dozen or so cats. It made sense since he owned a house for me to move there and I wouldn’t have to worry about not having a place for my babies and have to leave a house because it was being sold. I knew someday we would move back west because he liked it out there too. But he had a home so that is where we went.

Many of my cats by now were seniors and I hadn’t gotten any “new” ones in many years. I have always had cats. Once I was divorced we always seemed to have 7 or 8. Then my son and I bred Maine Coons for a few years and we had many more. Life interrupted again in 2001 with 9/11 and I had to go live in a dorm with one of my sons for a year. Liz took care of most of our cats. We placed a number of them with other breeders and friends. Then Dan died and Chris and I moved into an apartment in Astoria Queens and we got our cats back. But then the landlords there decided they needed to rent the apartment to a family member. We moved back to Rochester to live temporarily with Chris’ dad. Chris and I got a trailer in a lovely trailer park and we had a home for ourselves and our cats where we didn’t have to worry about moving again. So I thought. That is when the job offer in California came up. I could work remotely. But I really was liking the warmth of the west coast. I started a long distance commute and decided to move there. Two weeks later Chris died. And when I got on the plane to go back to the west coast I knew I would not be back.

Moving in with Vinny I thought my days of having to rent a place and worry about having my cats with me were over. This was 2008. Over the next couple of years my seniors passed away to go over the Rainbow Bridge and be with Chris. In 2009 Chris’ birthday was coming up and was particularly hard for me. I had looked outside and seen a kitten under a chair in a rainstorm, but where we lived there were a lot of feral cats so that didn’t seem unusual. But this kitten looked at me in a way that I couldn’t forget. A few days later Vinny’s mom said she saw a tiny kitten that looked like it was in trouble around her house. So we put some food in a carrier and when the kitten ran in to eat we locked it in. Poor baby was terrified. She was undernourished and scared and sick. We took her in our house and made a special place for her in the office of our house where she could hide and be safe. Kitten formula, meds, heat and love brought her back to life. She only trusts Vinny and I, she is blind in one eye. As an adult she weighs all of 5 pounds. Her name is Snowflake because she is mostly white with a black back and a white snowflake on her back. We tried many names for her and that was the only name that she responded to. The neighbors called her the invisible cat because as soon as the front door would open she would disappear like a ghost. When we traveled to conferences whoever was house-sitting never got to see her.

In September 2010 it was nearing Dan’s birthday and a neighbor walked up to the house with her husband. She was holding 2 black kittens and he was holding 3 others. They were days old and had been abandoned in the neighbor’s yard. They brought them to us because they knew I could help since I raised cats in the past. We didn’t intend to keep any of them, the neighbor planned to take one or two and others would take them as well. Something to note is that in that neighborhood most people had indoor/outdoor cats. I have never had outdoor cats in my adult life. Watching cats get hit by cars and busses made me realize that my babies needed to be safe indoors with me. Not roaming the streets.

The kittens – known collectively as the babies – did well once they were cleaned up and medicated. Their eyes had all been infected and they were covered in fleas. Daily baths and hand feeding had all but one doing well. The littlest girl was struggling. After she would eat I would hand her to Vinny and she would sit on his shoulder with a towel or blanket to keep her warm. We almost lost her more than once but she was a fighter and she made it. To this day she demands “ups” and runs up Vinny’s arm to his shoulder. We call “Babies, babies” and they all come running.

There is one issue with them. They don’t know they are cats. They don’t fall like cats, you can’t even put them down on the floor without them landing wrong. They imprinted on us. They could not go to the neighbors that would have them be indoor/outdoor cats because they did not know how to act outside. They have no cat instincts. The neighbor that brought them to us took one to her house for a visit and when it came back a couple hours later it was so happy to be home and was terrified over being there.

But it is ok since we have our own house and no one cares if I have 5 more babies. Right?

Until October 2012. Hurricane Sandy. We expected a couple of feet of water in the house. We put everything up on desks and tables. We put the cats in carriers and were going to leave them in our office on a desk. We were going to be upstairs at a neighbors house. Our house was one story. I had taken some important things up to the neighbors, computer hard drives, cameras, a little food and some jackets. The water started coming. We made the decision the cats needed to not stay in our office. We quickly moved them across to the neighbor’s house. As I handed the last carrier to Vinny to take upstairs I turned to close the door and the wind rushed in and fought me and the water started flooding hard. I barely got the door closed. It was a surreal “movie moment” where you see the actors battling the elements. Only it was real. And we watched from the neighbor’s windows as our house went under water.

I’m writing this all today because it is the anniversary of me arriving in Arizona after a cross country drive to a rental home. Four years ago we lost everything. We lost everything in our home. We lost the home itself. Me and my cats, we had done this before. Except for Snowflake and the Kittens. But they trusted me completely and knew that all would be ok. Even sitting in a car in carriers for 5 days they knew it would be ok.

Since November 19, 2012 we have had to move 4 times. Not because of the cats. Because each time the landlords decided to sell the house we were in. I have begun to wonder what I did to the Universe to not be able to stay in a house for more than a couple of years. I lived in NYC for 4 years and 3 months. That was the longest I lived anywhere since 2001 and 9/11.

And now I thought I found a beautiful home to rent in an area I love with a landlord that loves animals. Alas that is not to be. I moved in, I bought new furniture while Vinny was in NYC dealing with more house stuff back there. If I wanted to we can’t move back to NYC yet. Probably not for at least another 8 to 12 months. I went to pay the landlord additional pet deposits and she decided that I have too many cats and cannot stay. Or I can stay here and give my babies away.

I am almost 60 and I do not have a home, and if I want a home I cannot have the animals that have kept me sane and that love me unconditionally. I will not break their trust. I won’t get any more animals but those that I have need to stay.

This is not a choice I should have to make at this age. At this point in my life. I am good to people. I don’t abandon people or animals. I love deeply and appreciate the life I have.

So on November 19, 2016 I again need to look for a place to live because I will not compromise and allow someone to dictate if I am allowed to love my babies and keep them with me. I will compromise for a couple of months and have “the babies” live with someone while I hunt for a new place to be. And that is all I want. A place to just be. And a landlord that won’t sell the house out from under me while I get things together to buy my own or until we have a house to move back to in NYC.

For those of you that have followed my journey from the days after losing Dan until now, you know how much the west has healed me, how much moving to Arizona has been good for me. And you know my love for animals and nature.

I have to trust that this is where I need to be and that at some point the Universe will let me be and stop tossing me from place to place. I’m going to be 60. I want to “be”.

In 45 years I lived in 4 homes. In the last 14 I have lived in more than I care to count. I don’t mind being a nomad, I do mind being told how to live when my life doesn’t harm anyone.

Dear “Me”

Dan hand wrote this letter to himself sometime around late 2000/early 2001. He was 19.

Dear Me:

Life is about intelligence, about survival, and about being fun. First you have to do what you need to. Then you need to do what makes sense. Then you have to do what’s most fun.

Society likes to put a lot of limits on the world. Society likes to dictate how things “should” be. Usually society’s dictates don’t really make sense.

Kids aren’t stupid, they know what you teach them. If they don’t know something, teach them. They’re people just like you, they have brains just like you, they can understand concepts just like you.

There isn’t a set way people are supposed to act. Often people act irrationally. Often there’s more than one rational response to a situation. There are wrong ways to act, but there are no single right ones.

Originality is a key to a fluid world. Without new ideas, new reactions, the world stagnates. It’s my goal to make people think, to make people feel, to make people see past societal stagnation. The question “Why?” holds the world in its letters. It’s not wrong to ask, or to demand, an answer.

Pointless rules just add hardship to a world that’s hard to live in to begin with. If something doesn’t make sense, ask when and why it did. Decide if the answer still holds today. Because reason and common sense will change over time. The world needs to be willing to change. People need to have the courage to change it.

DFogg
dan-signature

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.

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!

Not “How to” But “How Did I” Transcript

Not a “How to” But a “How Did I”….
Technology Gave My Children Better Lives
Chapter 1

I’m sitting here on a day that is a sad day for me every year. Nine years ago today, on Mother’s Day, May 13th, 2002, my youngest son was killed in a car crash. Every year on May 13th, I usually try to do something special that commemorates his life or helps other people. Today, what I decided to do is talk about how I got started on the Internet. Normally, I don’t do single podcasts by myself, so I hope this ends up being an okay podcast.

I think it’s important for a lot of moms and dads to hear my story so that they can understand that their story, even though it’s maybe in a different time and place, we all have some very similar experiences. I want to talk a little bit about it’s a bit of a history lesson in how the Internet has changed how we deal with certain things in our lives.

It all ties in with my starting a blog, DeborahCarney.com, which has taken me a long time to get to simply because it’s hard to talk about and write about certain things when you’ve had a lot of pain in your life. Again, I want people to understand, in my case, how technology has made a huge difference in a lot of aspects of my life.

To go back to the beginning, I married young, 19 years old, had a daughter in February of ’77, and had my son, Chris, in July of 1978. He got really, really sick when he was seven weeks old and had to be hospitalized. They thought that he had meningitis. It made him it very weak. It acted as a temporary paralysis. They thought that that disease paralyzed him. He started on his path of recovery. In the meantime, life went on. He got to be about nine months old and he seemed to be getting stronger, and then all of a sudden, he stopped. He could pull himself up to kneeling, but he could never stand.

We started to take him in for some testing and getting some evaluations done. Now they said it was ECHO encephalitis. It acted like a paralysis, like a polio type thing. The thing that got to them was that even though he couldn’t stand, and it seemed that he was very, very weak, he could still wiggle his feet. I can’t tell you how hilarious it was to be sitting in a hospital room at a teaching hospital and having neuromuscular specialists and neurologists come in the room with groups of students and go, “Look, no weight bearing, can’t use his lower extremities, but look, he can wiggle his feet.”
[Read more…] about Not “How to” But “How Did I” Transcript