An Unlikely Masterpiece

We were thrilled with the news of
our first child, a son whom we would
name Kieran, after struggling with
infertility for several years. Like most
parents, we began dreaming about our
life with him soon after we found out
God was knitting him together in my
womb: tossing around a football in the
backyard, teaching him about Jesus,
starting the first day of school, helping
him earn a driver’s license, shepherding
him to become a man who would
love God and his family. The Lord was
so good in giving us this child.

His birth was eventful, and at Kieran’s
two-month checkup the doctor
heard a heart murmur, which led to a
diagnosis of supravalvular aortic stenosis
(obstruction of the aorta). Kieran
also wasn’t gaining weight, wasn’t
sleeping well, and spent most of his
time screaming.

We trudged to our local children’s
hospital almost weekly, visiting one
expert after another, trying to find
answers that would explain the
strange cluster of symptoms. Finally,
when he reached nine months, after
multiple blood tests and more doctor
visits, a geneticist called me and said,
“He has Williams syndrome.” With
those words, we were abruptly shoved
onto a path that we hadn’t even been
aware existed. I called my husband
with the results, and he left work
immediately. We spent the rest of the
evening sitting on our couch, grieving,
and trying to figure out what Kieran’s
new future looked like.

As we would later find out, Williams syndrome is a “spontaneous”
deletion of about 25 genes occurring at conception
on the long arm of the seventh chromosome. Researching
it brought up phrases such as physical disabilities, intellectual
disabilities, developmental delays, speech delays, fine-motor
issues, visual-spatial problems, IEPs, heart condition,
blood pressure problems, renal stenosis, speech therapy, occupational
therapy, physical therapy, and the list went on.

As tears flowed down my cheeks, I remember thinking,
“There must be a good God in the midst of all this. It can’t
be any other way.”

Giving Space to Pain

Through our Bible study over the years, we knew that the
pain this diagnosis caused could only make sense if there
is a good God who created a very good world that sin has
corrupted. If there is no infinitely good God of the Bible, if
there is no way to say, “This is what life should look like,” if
we are all just haphazard arrangements of chemicals bound
together over time, then the term disability is meaningless.
It would mean that this random arrangement of chemicals
isn’t any better or worse off than any other arrangement of
chemicals. And the pain we felt, as we grappled with this
new diagnosis, had no logical basis.

Yet even with that knowledge settled firmly in our
hearts and minds, we continued to grieve. My friend Georgia
shared a thought that helped us give space to the hurt:
“Knowing the truth doesn’t take away the pain.” Nor should
it. Part of the curse is experiencing the pain of death and all
that accompanies it.

Like so many others, as we picked up the fragments of
our broken dreams and began to piece them back together
in new ways, we tried to make sense of the puzzle we were
working on. Did God create Williams syndrome? Is there
purpose in disability?

Who Fashioned Kieran’s Chromosomes?

We were firm in our pro-life belief that the Lord knits
every baby together fearfully and wonderfully from the
moment of fertilization (Psalm 139:14). But where do those
with disabilities fit into that belief? Was our son really a
masterpiece of the Creator?

As we’ve mined the depths of the Bible’s teaching on God
and his sovereignty, we’ve come to accept that just as he is
involved in the intricate workings of the universe, he is also
involved in the intricate workings of conception. As such,
in his goodness, he gave our son (and each one of us) a specific
genetic combination, which in our son’s case included a
deletion on part of one of his chromosomes.

When God called Moses to ask the Egyptian pharaoh to
release his people, Moses made excuses. He pointed out to
his Creator that he was “slow of speech and of tongue.” So
the Lord responded to him, “Who has made man’s mouth?
Who makes him mute, or deaf, or seeing, or blind? Is it not I,
the Lord?” (Exodus 4:11).

In this passage, God is taking credit for making some people
blind and some deaf. Reflect on that with me for a moment.

Over the years, we’ve let that truth sink into our souls.
We run toward the belief that, while the world may call Williams
syndrome a “spontaneous” mutation, we call it a providential
one. Before you balk at that, think about this. The
genetic mutation that pervades every cell in our son’s body
has visible effects—from his facial features to his heart and
kidney problems to his learning disabilities. Yet, that’s true
of all of us. Much that we associate with our basic identity is
influenced by our genes.

Every one of us is suffering from 6,000 years of the curse.
In fact, which one of us would say that we have a completely
perfect body and mind? Our problems may not be as apparent
as Kieran’s, but we have them just the same. And we
were all knit together carefully and with great purpose—in
all our physical imperfections—by the same good, kind, loving
Creator for his purposes.

To put it another way, how many mutations—or which specific
mutations—separate the “normal” people from those
with “disorders”? If, as pro-life people, we’re not prepared to
say that God created and fashioned each and every person,
at what point do we say, “Yes, you manifest the handiwork
of God, but you don’t”?

One theologian defined disability this way: “We are
disabled to the degree that we cannot properly fulfill the
creation mandate in Genesis 1:28 . . . [where] God speaks to Adam and Eve to ‘fill the earth and subdue it’” (Dr. Mark Talbot’s
message “Longing for Wholeness: Chronic Suffering and
Christian Hope,” DesiringGod.org). How many of us can say
that we’re able to perfectly fulfill God’s dominion command?

Of course, we understand that our actions have consequences.
In some cases, the actions of parents before the birth
of their child can have dire consequences on the baby. For
example, if a mother consumes too much alcohol while she’s
pregnant, her baby can be born with fetal alcohol syndrome.

We also understand that something may happen to the
baby during development, such as what happened with my
cousin, Karen, who was born with hydrocephalus. The doctors
didn’t catch it until she was three months old, leaving
her severely disabled. Until she passed away a few years ago,
she was nonverbal and used a wheelchair to get around. Yet
God is still the ultimate author of life, and he is in control.

And we have the hope that we will see her again in
heaven, where she’ll have a perfect body, free from the curse.
Because we have received the gift of salvation through Jesus,
we look forward to experiencing eternal life with her as she
runs and plays and converses in ways we can only imagine.

Created with Disabilities for a Purpose

Each
individual is handcrafted by the Creator to display his glory.

As we dove into the world of therapies and ongoing doctor
visits, engaging with those who were walking on the same
path we were, the prophet Isaiah reminded us that each
individual is handcrafted by the Creator to display his glory
(Isaiah 43:7; see Romans 11:36).

And we learned what Jesus, the Creator
of our son, taught his disciples:
“As [Jesus] passed by, he saw a man
blind from birth. And his disciples
asked him, ‘Rabbi, who sinned, this
man or his parents, that he was born
blind?’ Jesus answered, ‘It was not that
this man sinned, or his parents, but
that the works of God might be displayed
in him’” (John 9:1–3).

Although mutations, diseases, disabilities,
and suffering are part of the
curse and are the result of our general
sin in Adam, they aren’t necessarily
a direct result of any specific sin that
we’ve committed. Jesus makes this
clear here. Although the man and his
parents were sinners, his blindness
wasn’t the direct result of a sin that
they had committed.

This man was blind, and the rest of
us were also created as we are in order
to display the amazing works of God
in our lives. Kieran is a walking banner
for the works of God.

The Real Source of our Value

We’ve seen an argument among the
pro-life community that somewhat
reflects Jesus’ teaching, but it puts the
emphasis in the wrong place. In a Williams
syndrome group on social media,
someone posted her thoughts about a
mom who had her unborn baby killed
because the baby had been diagnosed
with Williams syndrome: “If she only
knew how much of a blessing our children
are, if she could only see how
much they contribute to society, surely
they would change their minds.”

Another video that occasionally floats
around the pro-life community features
the singer Andrea Bocelli’s story of how
the doctors urged his mother to kill
him before he was born because he was
blind. The video’s message is, “Look at
how much Andrea Bocelli has contributed
to our society through his music;
think what we would be missing if he
had been aborted.”

What’s the difficulty with these two
examples? The danger is that the worth
of a person is tied up in his or her contributions,
his or her work, instead of each
person’s inherent value as an imagebearer
of God. If we begin to assign
the value of human life on what we do
rather than who we are as people created
in God’s image, then we shift the
argument for life from an absolute standard
(“God says do not intentionally
take the life of someone who bears my
image”) to one that is utilitarian at best.
It makes some people less valuable—and more disposable—than others.

It’s Still Difficult

It is certainly true that each child
is a gift and blessing from God. And
we’ve experienced that with Kieran.
He has a quick smile, a huge laugh, a
friendly countenance, and a love for
God that puts me to shame. But disabilities
bring difficulty as well.

It is hard to watch your child struggle
with tasks a child who is developing
typically can do easily. Continual
hospital visits are overwhelming.
Medical bills rack up quickly.

When we contend for the value of
life because of “the good he brings to
the world” instead of emphasizing that
our value is based on God’s Word, we
may, perhaps, miss another purpose in
suffering and disability.

I appreciate Paul’s perspective on
suffering in 2 Corinthians 1:8–11. He
begins, “We do not want you to be unaware, brothers, of the
affliction we experienced in Asia. For we were so utterly burdened
beyond our strength that we despaired of life itself.
Indeed, we felt that we had received the sentence of death.”
(Incidentally, Paul’s despair here and his next comments
show how false that old adage really is: “God won’t give you
more than you can handle.”)

Then he concludes, “But that was to make us rely not on
ourselves but on God, who raises the dead. He delivered us
from such a deadly peril, and he will deliver us. On him we
have set our hope that he will deliver us again.”

We serve a God who gives grace for every day and every
situation. Disability and suffering show us very quickly
that we cannot rely on ourselves and that we desperately
need the Holy Spirit to work in our lives to bring comfort,
strength, wisdom, and all his fruit. These difficulties can
lead us to a deeper relationship with our Savior and his Word
as we depend on him. Even in disability, God is working to
conform us to the image of his Son.

When we gloss over the hard parts of disability, we aren’t
being honest about real life in a cursed, fallen world, and
we can’t accurately minister to others who find themselves
in these difficult situations. Paul was honest about what he
was going through; he pointed to God, and he invited fellow
believers to share in what he was going through so that others
will see “the works of God” and praise the Lord.

Sadly, in many cases, disabilities cause people to turn away
from following Christ, but our attitude should be the opposite.
Christians, of all people, should recognize that each person
bears the image of God. When the Lord brings someone
with a disability across our path, we need to seek to get to
know him or her first as an individual, finding out who he or
she is as a person. And, in some cases, we might discover how
we can be the tangible hands and feet of Christ, not out of pity
but out of a love for Jesus and those he has created.

In fact, Jesus commanded, “When you give a feast, invite
the poor, the crippled, the lame, the blind, and you will be
blessed, because they cannot repay you. For you will be
repaid at the resurrection of the just” (Luke 14:13–14).

In God’s family, “the parts of the body that seem to be
weaker are indispensable” (emphasis mine, 1 Corinthians
12:22). Having Kieran in our lives has made this passage take
on a much more personal meaning for us.

Throughout our journey, the Word of God has been powerful
in changing and forming our own perspective on those
with disabilities. Most importantly, we are thankful that
God, in his goodness, has given our indispensable son for
his good purposes.

https://answersingenesis.org/sanctity-of-life/unlikely-masterpiece/ This article originally appeared on answersingenesis.org

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