If you were to look up the world life in the dictionary you would find several definitions. My favorite is a bold definition. Merriam-Webster defines life as the sequence of physical and mental experiences that make up the existence of an individual.

With the current political climate, you are hearing a lot about “pro-life” and “pro-choice” as people tend to use a handful of reasons why they would choose to vote or not to vote for a particular candidate and this happens to be one that is on the forefront of people’s thoughts. I’ve read so many articles that I’ve been so impressed with and so many that make me cringe.

I had my first child as a child being raised by an un-medicated manic depressive father and an uneducated mother with the best of intentions who never once had one single conversation with me regarding sexual education. I was barely 16 years old when I gave birth to my first child. I never considered getting an abortion. Not because of a belief that it was right or wrong but because it was never an option that was discussed.

I gave birth to a 7 pound, 5 ounce baby boy with a head full of curly hair and the sweetest little round face. The curls attracted people from all over the hospital. There would be knocks at the door of my hospital room, asking could they see the little baby with the curls.

Little did we know that those curls were a trademark sign of a terminal neurological disease that would affect so many of the physical and mental experiences that would make up his existence.

Like so many parents, we would watch him say his first words, sit up, take his first steps, and play with his friends. We would beam with pride as we listened to him in preschool telling us all about his ABC’s, “T is for tasting tater tots.”

Unlike so many parents, we’ve also watched him lose the ability to express himself in a manner where he can be understood. I can count on my fingers how many people can understand him enough to carry on an intelligent conversation. We took him to physical and occupational therapy appointments year after year, trying to hold on to every minute of independence he could. We watched as he took his last steps. We sat in a waiting room as a doctor performed a surgery to insert a feeding tube because it became unsafe for him to eat without the risk of choking to death. We sat with a surgeon after he performed a 10 hour surgery to repair his spine because it was affecting his ability to breathe, a surgery that he was not sure he would survive. We’ve sat by his bedside as his little body fought to survive, a tube in every place possible. We’ve watched a helicopter take off with him from one hospital to another and drove hours to be by his side, time and time again. We’ve seen him come out of seizures where he begs not to die and come out of some where he doesn’t understand why his legs don’t work. We’ve listened to a doctor ask us if we were sure we wanted a feeding tube because that was “extraordinary measures.” We’ve heard a doctor say, “if he makes it through the next few hours” on more than one occasion. We’ve heard “there is no cure, there is no treatment, take your son home and enjoy what time you have left.” We’ve grieved with the parents of other children who have had this disease who have buried their children because of a complication of this horrific disease.

Our son can no longer walk. He can barely drive his wheelchair due to the contractures of his hands and his eyesight. Our son hasn’t ate anything in years. He barely drinks enough in a day to wet his mouth. He is fed by a tube. We hook him up three times a day, everyday. He can no longer urinate. We catheterize him four times a day, everyday. He wears diapers, all day…everyday. He sleeps with a machine that has a backup breath rate with a monitor that beeps if he doesn’t breathe enough. Every night. He barely has the use of his hands. He can’t pick up anything for himself or do anything for himself. He can’t shower himself or dress himself or even brush his own teeth. He can’t even sit in his wheelchair without a strap across his chest because he doesn’t have the strength to sit up anymore. He is totally dependent on us for everything. There is not one single thing he can do independently. This will continue to get worse with time.

The sequence of mental and physical experiences….

The most heartbreaking of all to watch was the loss of friends, one by one. He’s one of the most social people I’ve ever met and he doesn’t have a single friend outside of his family. I can’t tell you the last time anyone came over to spend time him without being asked to. He doesn’t get invited to go places. He goes to school and even in a special needs class is still the only child in a wheelchair and is not able to participate in several activities. Do not get me wrong, we have a handful of supportive people in our life and we have been blessed several times by people we met that had no reason to care but did.

Our son just turned 18 years old. He’s been called an inspiration. He gets up every morning with a smile on his face, ready to start the day despite the fact that his disease has ravished his body. I think because he carries himself so well people have this idealistic impression of what his life is. Our family are positive people and we just take one day at a time. We follow our son’s lead.

However when the day is over and the house is quiet I think about his life and all of the mental and physical experiences that have made it what it is. The truth is he has never been in love. He will never go on a first date. He will never get married and have a family. He will never drive a car. He will never have a career. He will never have independence ever again. As his parents, we are done with the good “firsts.” We have a lot of loss still to come. Just when you think there isn’t anything left to take, the disease surprises you and takes more. We know that there will come a time when his disease will take everything from him but his mind and he will be trapped inside a failed body with what I assume will be both a fear of living and a fear of dying at the same time.

We consider ourselves one of the lucky families because our son has been great cognitively even when physically it was more than challenging. We know that there are diseases much worse than what our son has. I have a friend whose son was diagnosed with Asperger’s and she told me one time that she hated “venting” to me because she couldn’t imagine what it must be like to think you have a healthy child and watch them develop and do all the things that children do and then have to watch it all be taken away. Our neurologist that diagnosed our son told us that this wasn’t like a child getting diagnosed with cancer. This was a long road. There would be no casseroles. There would be no celebrating the last day of chemo. There would be very few small victories. I remember thinking what an awful thing for him to say, to compare one illness to another. I understand what he meant now. He was trying to explain that people almost just get used to your normal and it’s hard for them to see the daily struggle.

This is just our experience raising a child that had there been a genetic test for in the womb, a physician might have suggested a termination of the pregnancy. Let me be clear in the fact that I am pro-life and I am also pro-choice. I believe a woman has the right to make decisions about her own body.

So ask yourself, are you pro-life or are you pro-birth? Women consider abortion for all sorts of reasons. What are you doing to enrich the lives of the children who are born to the struggling single mom? Are you constantly putting down the government programs that provide aide to these families? What are you doing to help the family of the disabled child down the street? How are you helping the child at school that’s struggling to stay awake and is hungry because they are living in poverty? Are you teaching your healthy children to be kind and generous? Are you teaching them to be considerate and grateful? Are you teaching them to be a friend to those who don’t have one?

I wish people were as dedicated to enriching the sequence of mental and physical experiences as they are to making sure the life is sustained.