Floating with an Incurable Condition: What They Do Not Tell You

My son Brenton was diagnosed with a rare genetic brain condition called Lissencephaly when he was two months old. We were completely blindsided by Brenton’s diagnosis, since he showed ZERO signs of anything being wrong until he was two months old. I had a healthy pregnancy and Brenton was perfectly healthy at birth. But that is one thing they don’t tell you: sometimes people are born with a disability or diagnosis and show zero signs until days, months, or even years later. Sometimes people have completely healthy pregnancies, showing no red flags, and then out of nowhere your life is turned upside down.

So what do you do once your child has been diagnosed with an incurable genetic condition that no one really has answers to? Well, you have a few options. You can either sink or swim — or float.

Quantity versus Quality of Life

What they do not tell you is that you will have to choose as a parent whether you want to sink or swim. It seems like an easy choose from the outside looking in. We made the choice to swim, or as I like to say float. We wanted to fight, but only for as long as Brenton wanted to fight. We wanted Brenton to be comfortable and really focused on his quality of life over his quantity of life.

The great debate: quantity of life versus quality of life. Many people may say, “Why wouldn’t you want to keep your child as long as you can? Why won’t you do everything possible to keep him around?” Nine times out of ten the people who ask this are not the parents of kids with special needs. They do not understand what it means to do “everything possible,” or even how traumatic that may be. Many people do not understand the whole picture of having a child with a complex medical condition.

I made the decision to “float” because although I will fight for his life, I will make sure he is living a life worth fighting. My entire goal every day and every night is to have Brenton enjoy life as much as possible. I refuse to force Brenton to be in therapy every day, all day, and have him miserable, since Brenton hates having to do any therapy. I refuse to allow Brenton to undergo elective surgeries that are not absolutely needed.

Battling to Make the Right Choices

No one tells you the battle you will have to face with yourself every single day in hopes that you are making the right choices. I hate confrontation, and until Brenton was diagnosed I avoided it at all costs. I quickly learned that I would have to meet confrontation head on and wrestle it like a bull to the ground. I fought battles against people I never dreamed I would have to.

Something they don’t tell you is that not every doctor has the same view of what kind of life is worth fighting for. Some doctors want your kids to be taken off of all medications, except the ones that numb them or make them sleepy, and then go home and live life comfortably so they do not have to “suffer.” Other doctors want you to battle for your child’s life, giving them the best medications, therapies, and surgeries to prolong their time.

I’ve fought battles against doctors who want my kid to have brain surgery instead of trying new medications. I’ve battled against doctors who think that because my son has an incurable brain condition that he does not deserve the same time and care as their other patients. Then there was the lab tech who told us, “I don’t understand why they keep babies alive like that.” Of course, there are battles against insurance companies who refuse to pay for anything because they don’t consider it necessary.

I’ve also fought battles against family members who think they know what is best but have no clue what your daily life is like. People who think you are overly dramatic about issues and who do not understand the severity of the situation. Oh, and my favorite of all time are those people who have never met a person with your child’s condition but who believe that all babies who are diagnosed with a serious condition while the mother is pregnant should be aborted.

Dealing with Emotions and Jealousy

Everyone has jealousy towards something or someone. No one told me how jealous I could get of other people’s kids. Now do not get me wrong — I love Brenton with all of my heart and soul and would never change a thing about him. At the same time I get jealous. I am human and we all want something someone has.

There is not a day that goes by that I wish Brenton could have a better life. That I wish Brenton could walk, run, play, or talk. But then it hits me like a freight train: Brenton knows nothing different. Brenton has zero concept of missing out on anything because this is all he has known. Brenton does not sit there and wish he could run and play because in his mind he is living his best life. That it is my own selfishness and jealously for wanting something more for him.

Jealousy for me, unfortunately, does not stop there. Recently I have had an increase of baby fever. I have a lot of pregnant people or new babies in my life and on my social media at the moment. Unfortunately for me, I had my whole life planed out and expected to be on baby number two by now. Brenton’s diagnosis is genetic, which means my husband or I may have pass on that gene, but we have not been able to get genetic testing on ourselves because of the cost.

We have decided to not have any more kids until we have the genetic testing and know what our chances are of passing this on to another child. It’s hard to see other people having kids and moving on in life when you have previously lost a baby and now have a child with an incurable diagnosis. But at the same time, I know I could not handle another baby at the moment. I know that Brenton needs our full attention and it would not be fair to him or the other baby.

Confronting Death

One thing no one tells you is how comfortable you become talking about the impending death of your child. I know some people will be completely shocked and take this in the wrong way — that I am happy for my kid to die. That is not the case. No, I do not want Brenton to die, but I know that there is a very high chance he will.

Brenton will most likely die before my husband or I do. It’s a hard pill to swallow, but it is true. Now, this is where all of the people say “prayer works,” “trust in God,” “miracles happen.” These are the people who do not want to accept reality. I am very realistic when it comes to our situation and know that a miracle will not happen or that a prayer will not be answered. You cannot exactly ask your DNA to just rebuild itself and for your brain to regrow itself.

No one ever tells you how weird it feels to say you already have your wishes written on paper for the end of your child’s life. I have accepted the fact that he will die way before I ever want him to. It may not be for another year, ten years, or even twenty years. No matter when it happens, I won’t be ready because really no one ever is.

Loving Your Child

Although being a parent to a child with an incurable condition is hard and draining, no ones tells you how much you will admire your child. Brenton is the biggest hero I know. Brenton fights for his life everyday, and most of the time he has a smile on his face while doing it. I remember during my pregnancy thinking about how much I loved my child, and then when he was born it was more than I could ever imagine.

I strongly believe that having a child like Brenton has helped me to learn how to love in a whole new way. There is no other love like the love you have for your children.