On May 13, 2002, my family experienced the first of our great losses. My 21 year old brother, the youngest of the 3 of us, would be taken from us as a result of injuries he sustained from a car accident. Danny had just finished his first semester in the Dramatic Writing program at NYU, and was on his way to Baltimore, with his girlfriend and her kids. There was a torrential downpour, and they should have waited, but chose not to. While on the New Jersey Turnpike, they were going too fast for the conditions, and hydroplaned hitting another car. The force was so great that it caused Dan’s wheelchair to turn 180 degrees, and he was then ejected through the back window. He was conscious when they took him to the hospital, and it all went downhill from there.
I have another way for everyone to support me! I have 2 more months until I compete in Colorado and there are still many expenses between now and then!
I realize it’s not possible for all of my friends to attend the pageant in Colorado, so I’m giving you a way to “come with me” virtually!
A friend has allowed me to “borrow” her idea that she uses to help her queen’s fundraise every year, in addition to help keep their spirits lifted while they are gone! You can “purchase” the opportunity to send me a Good Luck Message! I will be including everyone’s Good Luck messages in an ad page in the Pageant Program Book! So even though you might not be there physically, you can still be there (through your message) to support me. I can only include those messages purchased prior to April 20th in the ad, as I have a deadline to get the ad in!
Last night I did a google search on my name, just to see what was out there. I found a post I made on a site that had an email address for a site that I didn’t even remember ever owning, let alone developing. My mom put the domain into Archive.org and not only did I own the domain way back when, but it was a site for parents that had children with disabilities or that had lost children. This was my about page back in 2002 when I built the 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!
I promised that I would tell more about who I am, and how I came to be that person. March 5, 2006 is a day that will always live on, in both my head and my heart. On March 5, 2006, I lost the second of my two younger brothers, Chris.
You see, I was the oldest of 3 children, the only girl and the only one of us not in a wheelchair. I grew up with 2 younger brothers in wheelchairs, Chris being the first child with a handicap to be mainstreamed in the Spencerport School District in Upstate NY. I always had people telling me how sorry they were that the boys were in wheelchairs. I can honestly say that I wasn’t sorry, and neither were they, other than the occasional moments when they wished they could do something like play football. That’s exactly what I used to tell people in response to that. I am who I am today because of the things that I learned and experienced because I had two brothers in wheelchairs. They never knew how to walk, so they didn’t miss what they never had, so to speak. We started volunteering with the Rochester chapter of the Muscular Dystrophy Association when I was just 8 years old. The boys quickly became the local, then state poster children for NY, which meant a LOT of public events as I was growing up. It also meant that I started doing live television interviews at the age of 8 as well. The hosts of the local telethon, who were also newscasters on the local NBC affiliate, LOVED speaking with our family, and used every excuse they could to bring us into the station to be on the noon broadcast, as well as interviewing us during the live telethon.
Chris was the middle child and quite different from both Danny and I in many ways. Chris was an actor, and through the support of some of the staff and students at our school, participated in many of the school plays. About all he liked about school was his friends, chorus and rehearsals for shows. Neither of my brothers ever let being in a wheelchair stop them from doing something that they truly wanted to do.
One of the hardest things I’ve ever had to do in my life was to make the phone call to my mom, who was living in CA at the time, to tell her that she had lost her second child. Chris had been in the hospital all week and I had stayed with him. The doctors were great about keeping mom informed, and we all agreed that he was well when he was discharged. There was NO doubt in my mind that he could go home. He went to his girlfriend’s house and the next morning I got the call that he had stopped breathing and was on his way to the ER. Unfortunately despite everyone’s best efforts, he was never revived. I am thankful everyday that he chose to go to her house and not come home with us because I can’t even imagine if my son, then 6 years old, had been the one to find him that day.
Thank you to the wonderful people at Power CoCo for the opportunity to travel to Hollywood to attend the Oscars Live and Loud Viewing Party at the W Hotel Hollywood! I was a VIP guest and had the opportunity to walk the event’s red carpet.
Makeup by: Lori Krout, Stila Cosmetics