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.
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!