Quality of Life

Recently I was asked to share my thoughts on the topic of "Quality of Life" with the youth of our parish. Last night I gave my witness to the teens and adult volunteers and although I have given many witness talks over the years, this one is by far the most personal and my most favorite. After my talk several of the teens told me that they respected and admired me and hoped to meet Nicholas very soon. My heart was overflowing with love and gratitude to be able to not only share Nicholas' story, but also to give witness to all the people like him; the amazing, courageous, beautiful souls who make this world more full of love, kindness, empathy, and compassion. Here is my talk in its entirety: 

What is the value of life?

We could ask the newly pregnant mother who tried for years to conceive a child the precious value of life. We could ask a prisoner of war who spent decades in captivity enduring hatred and violence that is has now been set free the value of life. We could ask a man who just awoke from a coma after months of being asleep the value of life. I would guess that all three of these individuals would say that life is precious, life is patience, life is fortitude, life is survival, and life is brutiful, equal parts brutal and beautiful (borrowed form my favorite Blogger, Glennon Melton). 

Quality of Life:

The term "quality of life" often refers to the way people live: how much money they have, their job, their home, etc. We also hear this term often in the medical community to determine the best method of care and comfort for an individual. It is important to draw a distinction between quality of life and what the Catholic Church calls the “inherent dignity of life.” In their pastoral letter, titled Faithful Citizenship, the Catholic Bishops of the United States said, “Every human person is created in the image and likeness of God. The conviction that human life is sacred and that each person has inherent dignity that must be respected in society lies at the heart of Catholic social teaching. We believe that every human life is sacred from conception to natural death; that people are more important than things; and that the measure of every institution is whether or not it will enhance the life and dignity of the human person.” Since life inherently commands our respect, every member of society has a shared responsibility to create those conditions, which are conductive to a high quality of life for all citizens. Any deterioration in a given individual’s quality of life neither diminishes nor negates their fundamental human dignity. As the quality of someone’s life lessens, the obligation to defend that inherent dignity increases.

As Catholics, created in the image of God, people are not only exalted among all God’s creatures but those God-like qualities make us responsible for what we create, the resources we use—these and all the other elements which constitute the good life—are not solely for personal use, but for the benefit of all and a sign of the graciousness of God. Our lives will be judged by God on the basis of our virtue, not our possessions. For believers, the reality of human suffering is a true paradox. In this world, suffering is almost unavoidable and it is not simply negative.

The Beginning of Life

The beginning of life is our conception, but we enter this world though birth: We are all born as babies, even Jesus Christ himself. God created the human race in this distinct way because babies enter this world perfect, unblemished, holy, straight from Heaven. In the Gospel of Matthew, Jesus said, “Let the children come to me. Do not prevent them. For the Kingdom of Heaven belongs to such as these.” It is only as we grow and age that often the world gets in the way and our innocence and childlike love of Christ gets marred by pretty, unimportant things like money, power, and possessions. These things can allow sin to enter our lives and we may begin to see the world as the ultimate place and lose sight of our focus on holiness and obtaining eternity with Christ in Heaven.

Jesus’ Value of Life:

If we focus on the people that Jesus associated with while he was on Earth, we will see the value He gave to all life. He spent much of his time with the outcasts of society: the sick, the lepers, the blind, the lame, the paralyzed, and the sinners. There are not too many stories of him telling the perfect, able-bodied people how perfect they were. Time and time again he healed the sick, forgave sinners, and loved every person no matter how young or old, no matter their culture, no matter their choices in life. All He did was love. Isn’t that what He called us to do as well? To love one another regardless of our imperfections?

The Grace of Suffering:

We all, every one of us, has a cross to bear. Life in itself is not perfect. God didn’t design it that way. We all face trials, some silent (depression, eating disorders, anxiety) some visible (disabilities, cancer, Down’s syndrome) none are more or less, but they give us reason to seek God, to rely on Him, to come to him. To ask for grace and peace to endure.

In the apostolic letter Salvifici doloris, Pope John Paul II wrote about what he labeled the Gospel of Suffering, "This [next] chapter [in the Gospel of Suffering] is written by all those who suffer together with Christ, uniting their human sufferings to his salvific suffering. In these people there is fulfilled what the first witnesses of the Passion and Resurrection said and wrote about sharing in the sufferings of Christ. Therefore in those people there is fulfilled the Gospel of suffering, and, at the same time, each of them continues in a certain sense to write it: they write it and proclaim it to the world, they announce it to the world in which they live and to the people of their time. Down through the centuries and generations it has been seen that in suffering there is concealed a particular power that draws a person interiorly close to Christ, a special grace" (SD, n. 26)

Becoming a Mother

I have known since I was a young girl that God called me to be a mother. When my husband and I found out we were expecting our first child in the fall of 2007, we were thrilled. I felt that I had spent my entire life waiting to become a mother and that my vocation in life was finally coming to fruition. My pregnancy was completely normal and routine. Our son, Nicholas, was born seemingly healthy and absolutely gorgeous on May 20, 2008. It wasn’t until he was around six months old that we noticed he was not meeting the physical milestones of a typical six month old baby. He couldn’t roll over, he couldn’t pull his head up when lying on his tummy, and he was not sitting up on his own. We started physical therapy and at ten months he was diagnosed with a terminal condition called Spinal Muscular Atrophy (SMA). SMA is a genetic, neuromuscular condition in which the spinal cord does not produce a protein needed for gross motor function, which means that over time, Nicholas’ muscles have atrophied and he is now almost completely paralyzed, only able to have slight movements in his legs, fingers, and head. He has retained complete movement in his eyes. His speech is difficult to understand as his vocal muscles have atrophied as well and his tongue has constant tremors indicative of a neurological disorder. However, Nicholas is cognitively the same as a typical developing 5-year-old. He can understand, think, and reason the same as you and me.

To the outside world, Nicholas may look like a waste of life. He will most likely not be able to contribute to society by getting a higher education, joining the military, or the work force. He will rely on caregivers to provide basic help for him his entire life. Is his life less valuable than mine? Less valuable than yours? Some people say yes, that if he had been diagnosed in utero, he should have been aborted. After all, SMA is the #1 one genetic killer of children and most children die before their second birthday. Society tells us that people with disabilities are a drain on society, they cannot contribute, and therefore they can (lawfully) be aborted. Modern U.S. society values independence, power, fame and success. A person like Nicholas will likely never achieve these things. Is his life less meaningful, less holy?  What about people who survive horrific accidents as teenagers or adults that leave them handicapped? Should we kill them off as soon as they can no longer contribute to society? This becomes a very slippery slope. When human beings place value on life and determine a person’s quality of life based on extraneous things, do we become no better than Adolf Hitler who tried to exterminate the Jews and various other races based on belief and appearance alone? He successfully killed over 5.5 million people who were not deemed “perfect.”

Why Does God Create Handicapped People?:

This following passage is the best example I have ever found to explain children like Nicholas. The answer was written by a Jewish Rabbi named Aron Moss:

Question:

A friend gave birth to a baby with a rare condition that has rendered him severely handicapped. He is not expected to live much past his second birthday. I just can't understand why God does that. If life has a purpose, what is the purpose of such a short and sad life?

Answer:

Every birth is a gamble. A soul enters the world innocent and pure. But it may not stay that way. This world is a maze of diverging pathways, both good and evil, and the choice is ours which way we go. Once a soul enters a body, it is free and therefore vulnerable to corruption. While acts of good elevate the soul, every act of evil makes a blemish on the soul.

Some souls are so lofty; it simply isn't worth the gamble. These souls are too precious to risk being compromised by life in a body. They are too high to come down to this world. But the other option, not to be sent down at all, to never reach this world, would mean that we would miss out on meeting these holy and lofty souls and hearing their message.

So these souls do come down. But in order to be protected from the potential evils of an earthly existence, they are sent down into a body that will not compromise their holiness. They enter this world in a form that is above sin, above evil. From a purely physical perspective we call them "disabled" or "handicapped"; from the perspective of the soul they are protected. They will never sin. Their sojourn in this world is often brief, and in terms of this world may seem sad. But they have retained their purity. And they have fulfilled their mission.

These special souls remind us that true love doesn't need a reason. We often love others for what they give us -- we love our children because they are cute, smart, and high achievers; we love our spouse for the pleasure and contentment they give us; we love our parents because they care for us. This is love, but it is not pure.

When a child is born that will never achieve worldly success, cannot provide the usual source of pride for her parents, all extraneous reasons to love her fall away and what's left is the purest love that there can be. These children are lovable not because of what they do for you, and not because of what they will one day become, but simply because they are.

These pure souls remind us what love should be. Only such a pure and holy soul can elicit such a pure and holy emotion. We can only stand in awe of them, and the parents and friends who care for them. And we can only thank them all, for giving us a glimpse of what true love really means.

Perspective:

This is exactly how I see our son. Yes, when he was diagnosed at ten months, we grieved the physically able-bodied little boy we thought we would have, we grieved the life we planned for. Yet, five years later, I can honestly say I see Nicholas for the true gift that he is. He is holy, he is happy, he perseveres despite his diagnosis. Anybody that has met Nicholas, anyone who has spent time with him sees the sheer joy he finds in even the most mundane tasks. He finds pleasure in the simple things like playing with his younger sister, creating art at school, or participating in mass. He is a reminder of how close Christ is to all of us. He is a blessing. He makes me strive to be a better person. My eyes are focused on the Kingdom of Heaven. I know that my son will most likely leave this Earthly world before I do and I want to live my life in such a way that I can be with him again someday to live all of eternity in the love and holiness and peace that is Heaven. I want to give his perfect love to the world. God did not just call me to be a mother, he called me to love as He loved and He sent Nicholas to show me how.