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.
