Dominic Carter - Discusses His Son's Battle With Epilepsy

The long journey for Dominic Carter Jr.

My schedule never seems to slow down. I cover politics on TV and the radio for a living. But on this day I was sitting at home and ran across a documentary. The TV program had me intrigued. It was about parents advocating the Virginia legislature to pass usage of medicinal marijuana. The parents were hoping for a solution to treat their children for epilepsy. That was my immediate bond and connection to this documentary.

This article is not about the pros and cons of legalizing medicinal marijuana. It is about my long journey with my son who has suffered from epilepsy since he was an infant. Also, my thankfulness for while Dominic Carter Jr. has seizures he is not incapacitated. Dominic Jr is not strapped down to a wheelchair. He does not have to wear a helmet for his own protection.

My empathy goes out to those parents dealing with their sick children. Parents that are forced to struggle twenty four hours, seven days a week. Parents that are caretakers, multiplied by one-thousand percent.

"Have we ever walked a day in their shoes?"

I am blessed. Dominic has seizures but they are not every day. Dominic has been able to graduate from College and hold down a part-time job. Life has definitely not been easy for him. He has had to struggle with hospital stays. Dominic has even undergone a bone marrow operation when he suddenly took ill. One time, Dominic's physicians did not understand what was going on. His white blood cell count kept dropping. Dominic had flu like symptoms that just never seemed to go away. Fever, joint pain and weakness to the point where he could not get out of bed. Dominic was eventually diagnosed with meningitis. The" kissing disease" as they like to refer to it on college campuses. Those were trying times. My wife Marilyn and I would take turns sleeping at the NYU epilepsy center with our son, which is part of the famed hospital in New York City. Dominic entire head was covered with electrodes to monitor seizure activity and Dominic Jr would say:

"please daddy, can I just go home"

All these years later this still breaks my heart: "please daddy, can I just go home." I still get flashback of Dominic Jr's plea from his hospital bed for his dad to do something. Anything. A father is supposed to protect his children, and I could do nothing!!! I was at the complete mercy of the medical science community, and still had to nightly host a TV Political show, and then act like everything was great.

"What about the time the phone call would come in to get to the emergency room immediately because my baby just had a seizure, and had to be stitched up after falling on his face?"

I would pray to God to please let my son be o.k, and take the epilepsy away from him and give it to me. I thank the tireless experts at the NYU Center. The nurses, the doctors, they would even bring in clowns to entertain the kids that were being hospitalized there from around the globe.

While all this was going on, we were caught off guard. My grandson decided to make his appearance into the world. This while at the same time Dominic Jr. was still sick and hospitalized. Somehow Marilyn and I took turns watching over Dominic and making little Carter’s delivery. Carter is our grandson's name. Little “Carter” is the hope of the family and I prayed that the delivery would be successful. I asked myself as I traveled from the city back to Rockland where our daughter gave birth, would epilepsy be passed down to him. I had an aunt that suffered with it, my Aunt Joann Carter. Marilyn had a nephew abroad who has been on anti-epileptic medication since he was a young boy. Also, Marilyn has a niece who seemed to have seizures whenever she became pregnant. After two children she indicated she had enough. She could no longer withstand the seizures during pregnancy.

In order for Dominic to graduate college he attended a local community college. He majored in Mass Communication. Finally graduating from Rockland Community College, in Suffern New York, we wondered whether or not he should go on to a four year school. I debated back and forth whether this was a correct move.

We decided let’s do the admissions and application process and see what happens. Dominic was admitted into a four year college, SUNY Purchase. God sent us this college. I had never met a more dedicated group of professionals that stood by our son.

I was a very proud parent but I also knew that the stakes would be almost impossible to earn that degree. Dominic had to repeat courses, and register with the learning center in college. He also attended summer school and had private tutorial services. But here is the point, Dominic continued to soldier on.

How did the epilepsy issue start for us?

On a nice fall day 23 years ago I decided to take my family out for some shopping and lunch. Still living in New York City at that time I decided to drive up to Rockland County. Rockland County, which is north of NYC. It's an area in which I would spend time with a friend and his family during the summer when I was growing up. His name is Ty Caldwell. I was familiar with this area and often would take my family out of the city on the weekends. We would get a hotel room and stay for the weekend to get away from my hectic work schedule and the fast pulse of New York. On this day, we headed from Rockland County to Orange County. The Woodbury Commons outdoor shopping mall which has grown tremendously in 2018. We were hungry, and went to their food court. Back then, there was only one food court there. McDonald's was my choice for me and the children because their French fries were a favorite. As we sat down to eat my five-year-old daughter, (Courtney Carter) decided she needed to use the rest room. My wife took her to the restroom as Dominic and I set about eating our French fries at a mad pace. My wife had warned me not to let Dominic put a lot of fries in his mouth for fear he would choke. With my hand, I waved her on as most men do when they do not want to hear what their wives have to say. No sooner did my wife go to the restroom I saw Dominic choking or what I believed at that time was choking. I immediately got up and had no idea on how to use the Hemlock Maneuver on a baby. A crowd quickly gathered. I went into a panic as a father and thought my baby might be choking. I asked for someone to call 911. A lady said “I saw your wife taking your daughter to the rest room. I will go get her”. When the ambulance arrived, I took off with my son leaving my wife and daughter to follow us in our car.

As the story is retold by my wife she indicated a lady shopper came into the bathroom screaming her name and that our son was being rushed to the hospital. She indicated later that she almost had a heart attack from fear. She had Courtney with her and she had to show courage. In addition, she had no clue where the hospital was. Again, the lady that found her in the restroom gave her the name of the hospital and directions on how to get there. Traveling at a speed of lightening and not really sure where the hospital was, a State Trooper pulled my wife over. She explained what had happened and he led her to the front door of the emergency room.

Once we arrived at the hospital all of his vitals were checked, and nothing was in his throat. Blood work was drawn as we waited for hours for the results. Family members were called and everyone wanted to come up and lend support. We decided that everyone should wait until the results of the tests were available. Everything came back negative and we were advised to make an appointment with his pediatrician and he was released. We exhaled on our way back home and each of us said a silent prayer that our son was safe. Two weeks later as we were getting ready for work Marilyn heard Dominic breathing rather heavily. When she looked into the crib his eyes were wide open but he did not respond. The ambulance was called as we rushed out in pajamas and jackets. It was at St. Luke’s Roosevelt in New York City that my son was diagnosed with “Petit Mal epilepsy.” This would begin our journey of neurologists and medications that often have side effects from hyper-activity to drowsiness. One may ask which came first the chicken or the egg. This was a question that his neurologist could never answer. Did the epilepsy cause a learning disability or was he predisposed to it. This began our journey through the school system. Each year it seemed that Dominic was changing elementary schools in order to receive the proper services such as speech, occupational therapy, a learning specialist and an aide.

Finally putting my foot down with the Committee on Special Services of the East Ramapo School District in Rockland County, NY, I decided that if they could not provide support for him in one school I would sue and send him to a private school at their cost. Having my attorney at my side they decided that all services could be arranged at one school.

Parents with special needs children if you don’t take in anything else that you are reading here, PLEASE remember you are the best advocate for your child and do not be afraid to challenge authority. There are also advocacy programs out there that can assist you. No one knows your child better than you and therefore, you should be their primary advocate. Marilyn being the helicopter parent and my no nonsense style of constantly challenging authority, Dominic met his goals and the coping skills that he needed to get him through college.

Living with a special needs child has not been easy on my family. There were times when I wanted to take my wife out for a night on the town, but she would say:

"Dominic does not look good today. Maybe I better stay home and watch him.” "Did I neglect my other child because Dominic was sick? Did Courtney understand what really was going on?"

These are all questions that parents go through.
Getting back to the documentary many of the siblings of these children were advocating the legislature with their parents. Courtney was taught to look out for the signs for when Dominic would have a seizure. Petit-Mal seizures are a disorder that is brief in duration and you would think that the person is just staring at you. He would stare right through you. His eyes would roll back in his head and his speech would slur. Often times he would urinate on himself and not know it. The nurse’s office at school always had a change of clothing for him in which we provided. In order to help Dominic we tried to enroll him into a program for service dogs. These are dogs trained to know when their master is having a seizure. Dominic was deemed ineligible because his seizures were not “bad enough.” According to the committee that over saw this program his “quality of life was not impaired.”

Next we investigated the vagas nerve stimulator. The stimulator is surgically implanted in the chest under the skin. The goal is to send electrical signals to the brain so that a seizure can be stopped ahead of time. This apparatus did not work for Dominic and it left him with a hoarse voice and a tingle in his throat.
Back to the drawing board with more medication and the combination of medicines that would actually be effective for Dominic’s type of seizure. Dominic has been on so many meds that when a new one was introduced I bagged the old medication up and took it back to the hospital so that they could dispense it to local programs.

As Dominic has gotten older throughout the years he has always asked when he could drive. According to the NYS DMV one must be seizure free for a number of months. Dominic would always make it several months shy of the monthly marking period when a seizure would occur. I would never want Dominic at the wheel of a car for fear of him having a seizure killing himself or an innocent bystander. I could not live with that on my conscious. This conversation continues to come up and I dread having it.

“How do you tell your child no to something everyone has?"

How about the time when Dominic wanted to join the football team in High School. His neurologist said if he could go a year without a seizure he could play. Finally, the week came when he tried out at practice. All along the coaches encouraged him, watched him closely and pretty much liked what he was doing on the field. On the last day of practice Dominic had a seizure. He was crushed and so was I. Doesn’t every father want their son to excel in a sport. To sit in the football stands and encourage him on while telling others in the stands that’s my boy!

The great Langston Hughes said in his poem Mother to Son. “Life for me ain’t been no crystal stair.” It’s something I repeated in the book on my life, “No Momma’s Boy.” How right Mr. Hughes has been. Life is not always pretty and is filled with bumps in the road. As I look over and see my son engaging in some activity these days I find myself smiling because I am so proud of him. Often times as well, I start crying in private because the road has been so difficult and heartbreaking. Absolutely heart-wrenching.

Dominic has traveled a very tough road both with his medical and educational issues, but he never wavered or succumbed to his deficiencies. Dominic gives me the courage to ask the tough questions of powerful politicians that some reporters shy away from.

These days as a father and now grandfather, I put one foot in front of each other and take one set of stairs at a time. My heart and prayers go out to any parent who has a special needs child. I know how hard you work. One of our proudest moments ever is when our son, Dominic Jr. was elected Homecoming King at his High School. Always remember: “Weeping may endure for a night, but joy comes in the morning.”

About The Author

Dominic Carter is a political analyst and commentator. For over 25 years Dominic has been a political reporter giving a voice to the voiceless and living by the golden rule "treat others how you would like to be treated."

Check out Dominic's website and book to learn more about New York's best political journalist.