Merry Christmas!

Do you talk about him?

Although we haven't settled on one particular educational partnership for our boys, one of the main reasons I'm drawn to the idea of teaching them--or at least Kieran--at home is that the thought of him being bullied at school hurts my heart.

I hear stories from parents of children with Williams syndrome about how their child has been teased, and the mainstream news outlets have recently been filled with the tragic outcomes of bullying, and it all makes me sad. I feel for the ones being bullied and the parents who watch it happen. And I think to myself, "If I can keep him home and (relatively) safe from that type of treatment, why wouldn't I?"

Now, I know there are lots of factors that go into choosing an educational partnership but discussing them isn't the intent of this particular post. Instead, I have a question for you:

Hypothetically, if we were to send to Kieran to school (or to your house or your church) and your child were a peer of Kieran's, would s/he act unkindly toward Kieran because he is "different"?

Before you answer, "Oh, no way, we don't tolerate bullies in my house," let me ask you another question.


Have you talked about him with your children?

Not in a "Hush, he's fine, don't talk about him" kind of way or even in a, "Just be nice, mmmk?" kind of way, but intentionally and purposefully, explaining why he might seem different to them?

Although we like to think of children as inherently kind-hearted and willing to love others no matter what, the truth is that each one of us is born with a sad tendency to look out for Number One (it's called our sin nature--Romans 3:23). So we need to continually be developing in them the right way to view people and praying that the Holy Spirit will apply the truths from His Word to their young hearts and give them a love for others.

If I could sit down with your kids and talk about Kieran with them, this is what I would say (see here for a fuller explanation):

Hey--you know how sometimes you might think Kieran is a bit different from you? Let me tell you something special about him. God made him just the way He wants him to be with a condition that we call Williams syndrome. God loves being creative, and He loves that each of His creations is different and special.

But no matter how different we might think someone is from us, we can know that God makes every single person--you and me and Kieran-- in His very own image. That makes us all very special and valuable. And it's OK that he's a bit different from you because that's the way God made him. 

Remember how way back in the beginning, God created a beautiful world that He said was "very good" (Genesis 1)? What happened after that? . . . Adam and Eve disobeyed God's command and, as a result of their sin, God placed a curse on His beloved Creation (Genesis 3).

Because we're all children of Adam and Eve, this curse has affected all of us in different ways. And part of the way it has affected Kieran shows in some of the differences you've seen. He needs a little bit more help in some areas. It's so great of God to give us opportunities to learn to help others, isn't it? He wants us to take special care of those who might be a bit different from us and to help them as much as we can (e.g., Proverbs 31:8, Luke 14:13-14). 

In fact, God wants us to be a champion for those who need special help--a champion stands up for them and fights for them and helps them with whatever they need. Do you think you could be a champion for Kieran? Like a knight on a white horse for him?

Take a look at these two videos--how are the kids in these videos acting like champions for those who needed a bit more help?  

Wasn't it encouraging to see how those other kids helped the ones who needed help? 

Another way that we can help Kieran is in the way you talk to him and about him. Sometimes you might want to tease him for things he can't do or the way he does things differently. But remember--each of us is created in the image of God and God wants us to be kind to every person (Ephesians 4:32). And, because each of us is an image-bearer of the Creator, when we tease someone, it's the same as if we're teasing the Creator and calling Him names (James 3:9). 

But even more than the differences you might see with him, there are lots of ways that he's similar to you. We've already talked about how he's an image-bearer of the Creator, just like you are. But he also likes to look at books and ride his bike and he loves eating Cheetos. One really neat thing about many people with Williams syndrome is that they love music--Kieran loves music. He loves listening to music and, I bet if you asked him, he would tell you his current favorite song and maybe you could sing it together with him. He also loves to play hide-and-seek and really enjoys laughing. 

I love being with my Kieran, and I know that if you take some time with him and find out what he likes and doesn't like, I bet you'll enjoy being with him, too."

My friend Georgia has taken the time to talk on multiple occasions with her daughter about Kieran, and it shows in the way Elizabeth interacts with him. She knows that he wanders and needs to be watched and will keep an eye on him at church. When she came to spend the day with us a few months ago, she brought pony beads and pipe cleaners so that she could make bracelets with Kieran and, in the process, help him with his fine motor practice.

And the way she understands and cares for Kieran has carried over into the way she cares for other children with special needs at her school. She sits with the girl with disabilities at lunch and helps her in class and at recess.

That makes my heart so happy. That's what it's about--teaching our kids (and ourselves) to see everyone (not just Kieran) as image-bearers.

If you haven't talked with your kids about Kieran (or whomever you know who has a disability of any type--mental, emotional, physical, speech, cognitive . . . the list goes on) in this way, will you? Please?

I for Insect Instrument

Last week, a package for Kieran arrived from Aunt Katy and Uncle Dan. Kieran loves getting packages in the mail. "Oh, is it for me?!" he says. 

This time the package contained a Bonz Band Musical Instrument Construction Set. Once the boys got it all opened and dumped on the floor, they loved putting together and playing the different instruments. 

When Friday rolled around, we were trying to figure out what Kieran could take for I show-n-tell. Since he had taken his harmonica as an "instrument" the past two years (2011, 2012), I decided he needed something new. So we used the Bonz Band to make an insect instrument (I gave myself double show-n-tell points for that one).   

Thanks to Aunt Katy and Uncle Dan for the fun birthday present!

You know you live in a Holler when . . .

your idea of one-upping your neighbor goes like this, "So, I checked out the specs on the truck we just bought and it will haul twice as much water [for the cistern] as [neighbor]'s truck does!"





So, there you go. Apparently, bragging rights in the Holler go to the guy whose truck can haul the most water/gravel/dirt/stuff.

F, G, H

I've been slack in posting Kieran's show-and-tell pictures from the past few weeks (actually, I've been slack in posting a lot of things lately--too many irons in the fire, as it were).

 For letter F, he took a football . . . a very special football held by a very special little boy wearing very special clothing (courtesy of his very special grandparents). It makes his daddy's heart happy. (Last year's F.)

 G was for gorilla.

And, today was hat day along with show-n-tell day for which he took a hippopotamus.

He's 5 now



Somewhere along the way he stopped being a really tiny baby who needed me for everything . . .

. . . and became a young boy who smiles widely and says, "Hi, Mom, I missed you!" when I pick him up after school.

We've had a fun week celebrating the five years the Lord has given us with him post-womb.

A few weeks ago, my sister asked me what she could get him for his birthday. So I asked him what he wanted. He said, "A present in a box." And when I asked what he wanted inside the box, he said, "A surprise." So Kenda surprised him with a violin, which he really enjoys "practicing."

The box came the day before his birthday, and we told him he needed to wait to open it. When he woke the next day, he came into our room and announced, "Today is my birthday!" And then he found the box in the closet, brought it into our room, and we all enjoyed opening the violin.

I tell him every night before he goes to bed, "You. Are my favorite Kieran." Because he is.

In His Image, round 2

In His Image: The Goodness of God in Disability

(Presentation given November 2, 2013 at Every Woman Café in Essex Junction, VT)

Let me begin by saying thank you to my aunt for inviting me to be with you today. I appreciate the opportunity the Lord has given me to share some things on my heart with you and look forward to spending some time in His Word with you.

This morning, I want to share a little about myself and my family and the path through life the Lord has placed us on, and wrestle through some tough God questions that we’ve encountered along our journey.

Before I get into that, though, let me direct your attention to your handout and the lyrics printed there. How many of you know this song by Louis Armstrong? We probably all have it echoing through our minds now and then. I won’t try to sing it for you, but take a look at the lyrics with me:

I see trees of green, red roses too
I see ‘em bloom for me and for you
And I think to myself, what a wonderful world.

I see skies of blue; clouds of white
Bright blessed day; dark sacred nights
And I think to myself, what a wonderful world.

The colors of a rainbow so pretty in the sky
Are also on the faces of people going by
I see friends shaking hands, sayin how do you do
They're really sayin I love you.

I hear babies cry; I watch them grow
They'll learn much more than I'll never know
And I think to myself, what a wonderful world

What do those lyrics have to do with what I’ll be sharing today? Great question. And I’ll tell you . . . in a little bit. As I go on, keep those lyrics in mind.

I grew up in a Christian home and the Lord graciously saved me from my sins at an early age. My parents are people who love the Lord and who are committed to His Word. One of the big, overarching principles they wanted to instill in my sister and me is how to understand life through the lens of the Bible.

There were many times when they would ask me, “What does God say about that in the Bible?”

They continually pointed us to the wisdom and guidance that only comes from God and encouraged us to dig deep in His Word to find, as Peter wrote in his second book, “everything we need for a godly life through our knowledge of him” (2 Peter 1:3)

After I graduated from college, sixteen years ago, I began to work with Answers in Genesis. Eleven years ago, I met and, six months later, married my husband Seth.

We struggled with infertility for several years before I became pregnant with our first baby. Like most parents, we were thrilled and began dreaming about our baby’s future. When our son was born in 2008, Seth was sure he would be a star running back in the NFL and I knew that we had a future valedictorian on our hands.

And then the doctor visits began.

From the beginning of his life, Kieran struggled to eat, to sleep, to gain weight. So we were back and forth to our pediatrician’s office many times during those first few months. When he was two months old, our pediatrician heard a heart murmur in Kieran and sent us to the local children’s hospital where the pediatric cardiologist diagnosed him with a condition called supravalvular aortic stenosis. That means that there’s something wrong with a section of his aorta.

Let me stop here and talk a little about the aorta. Now, I’m not a doctor, and I don’t play one on TV, but I do want to share with you some amazing features about the aorta.

After your heart pumps your blood to your lungs to pick up the oxygen your body needs, it brings it back through the heart and sends it out to the rest of your body through the aorta.

The aorta is the largest artery in your body. It carries and distributes oxygen rich blood to all the rest of your smaller arteries throughout your body.

The walls of the aorta consist of three layers of connective tissue and elastic fibers. These fibers allow the aorta to stretch to prevent over-expansion due to the pressure that is exerted on the walls by blood flow.

Photo courtesy of http://www.firasmussamd.com/aortic_dissection.html

There’s a valve here that allows the blood to enter the aorta and keeps it from flowing back into the heart. Isn’t that amazing? Doesn’t the way this aorta is structured – its ability to stretch and contract—just scream “there is a Designer!”? When we look at this, it’s easy for us, as Christians and those who believe God is the creator, to say, “Yes, of course, there’s a good, loving God who designed it all! It’s a wonderful world!”

But what happens to God’s goodness when a baby, our son, is born with an aorta that is constricted? Supravalvular aortic stenosis. Supravalvular meaning “just above the valve” and stenosis, meaning “constricted.”

You can imagine what happens when a section of your aorta becomes too constricted. Many babies with this condition undergo open heart surgery to correct it within the first few months of their lives. And some need multiple surgeries. Just since the beginning of this year, I’ve known about a dozen children who have had this operation. And there are many others waiting to find out when they’ll need to have theirs repaired. Sadly, some children don’t survive the operation. So far, Kieran hasn’t needed the surgery but we don’t know what will happen in the future.

In response to this, one lady said, “This is a problem I have wondered about—how physically imperfect newborns can be admired as "the handiwork of God," because it casts such doubt on God.”

She has a point. We routinely point to God’s handiwork in our children—they are fearfully and wonderfully made by the Creator, right?  So do “imperfections” really cast doubt on the Creator?

Before I answer this lady’s question, let me continue with a bit more about our son. After we visited with the cardiologist, we met with several other specialists for a variety of other reasons—a GI nurse because he was diagnosed as “failure to thrive”; an urologist because he had several urinary tract infections, an endocrinologist, radiologist . . . I once calculated that of the 45 disciplines that our local children’s hospital featured, we had been to over a quarter of them within the first nine months of Kieran’s life. In fact, when we requested his medical records when he turned three, they sent them on a CD-ROM because there were over 500 pages of records on him.

The Diagnosis

When Kieran was nine months old, we visited with a geneticist, who did some blood tests to find out if there was an underlying condition that would explain all the problems he’d been having. The geneticist diagnosed our son with a rare genetic disorder called Williams syndrome. Williams syndrome is caused by a deletion of about 25 genes on the seventh chromosome and can lead to physical and cognitive disabilities. With this particular syndrome, in our case the mutation is, in medical jargon, “spontaneous”—meaning that neither my husband nor I are carriers of the disorder.

With this diagnosis, our lives took a sudden detour from the path we thought we were traveling. In the few seconds it took for the geneticist to say, “Yes, he has Williams syndrome,” we went from being parents of a potential NFL running back to being parents of a child with special needs—a child with potentially life-threatening physical problems, developmental delays, and learning disabilities.

How many of you have experienced a diagnosis like this? If you think about it, I expect that many of us have been exposed to some type of disability at some point in our lives.

Those of you who have received such a diagnosis know how it feels to be told you are not on the path of life you thought you were on. In a very real way, you go through a grieving process as you mourn the loss of the child you thought you had and come to grips with the child you now have.

Someone compared the experience to planning a trip. Having a baby is like planning a trip to Italy. You spend months and months deciding what you’ll see, where you’ll go, which places you’ll visit. You research the Sistine chapel, the canals of Venice, the leaning tower of Pisa. And you can’t wait to get there. But when you arrive, the airline attendant says, “Welcome to Holland!” Holland? But I was supposed to go to Italy. I didn’t plan for Holland. But you’ve landed in Holland and there you must stay.

The diagnosis left us reeling. We began thinking of his future in a different way—how much would he struggle to learn? Would he be teased for being different? Would he be able to drive a car? Get a job? Have meaningful relationships? Would he be in our care for the rest of his life?

But one thing the diagnosis didn’t do was cause us to doubt God or His goodness. I say this, not to pat ourselves on the back, but instead to credit our parents and those in our past who taught us who God is and why life doesn’t always turn out the way we expect it to. We shouldn’t wait until times of crisis come to develop a proper understanding of our God. We should be cultivating it throughout our lives and throughout the lives of our children and those in our care. Those “What does the Bible say about life?” questions took on a new meaning.
As you can imagine, we began researching all things pertaining to Williams syndrome. And thanks to the blessings of social networking, we’ve been able to make “friends” with other Williams syndrome parents and learn from those who have walked where we are currently walking. In trying to understand how things like genetic disorders fit into a Christian worldview, one of those parents, a Christian herself, posed this question, “Did God create Williams syndrome?”

 Or, to return to the question asked before, “This is a problem I have wondered about—how physically imperfect newborns can be admired as "the handiwork of God," because it casts such doubt on God.”

Both are valid questions. As Christians who embrace a life-affirming worldview, we often discuss how beautifully designed the human body is—a masterpiece of God’s creation. We know that we are “fearfully and wonderfully” made. So how does a child with a genetic disorder (or any “problem”) fit into this worldview?

Think about the song lyrics we talked about at the beginning:

I hear babies cry; I watch them grow
They'll learn much more than I'll never know
And I think to myself, what a wonderful world

When you have a child who isn’t growing as he should and who may not learn much more than I’ll ever know, do you think that I thought, “What a wonderful world”?

Sadly, I’ve seen several people just within the Williams syndrome community doubt God and even turn their back on Him because they don’t know how to answer these questions. Of course, this isn't limited just to one community—many, many people have walked away from God because they look at this “wonderful world”—with all its pain and suffering—and can’t see a good God in it. 

So let me walk you through how I answered these questions in our situation.

The General Sense

First, I want to address this from a general perspective. These questions deal with that age-old question of “Is God the author of pain and suffering?”

So let’s take a brief look at the explanation.

In the beginning, God created the heavens and the earth is six actual days. When He finished, he said that everything was “very good.” His creation was a reflection of His good nature. It was full of life and joy, just as He is.

God saw all that he had made, and it was very good. And there was evening, and there was morning—the sixth day. (Genesis 1:31, NIV)
I believe He designed the universe so that everything would work together for His glory and our good. In the Psalms, David writes:

The heavens declare the glory of God;
    the skies proclaim the work of his hands. (Psalm 19:1, NIV)

From Genesis 1 and 2, we learn that God created the first man Adam from the dust of the ground. And then He fashioned Eve from Adam’s side. God made both of them in His own image.

Because God is good, when He created Adam and Eve, He gave them a “very good” combination of DNA. He encouraged them to be fruitful and multiply. And had things stayed the way they were in the beginning, that “very good” genetic combination would have continued combining in “very good” ways as Adam and Eve brought forth children.
Genesis 1 and  2 reveal a truly wonderful world. Abundant animal life, all the fresh fruits and veggies Adam and Eve and the animals could eat, close intimate fellowship with the Creator. A husband who loved and cherished his wife as his own flesh.

When we read these chapters, we can legitimately sing to ourselves, “what a wonderful world!” Because it was truly a wonderful place –with the emphasis on was.

But here’s where that song breaks down. It fails to take into account the very next chapter in Genesis.

By studying Genesis 3, we learn that the wonderful world did not stay the way it was in the beginning.

God had told Adam that he was free to eat from any tree in the Garden of Eden, except one: The Tree of the Knowledge of Good and Evil. God declared that the punishment for disobedience was death.

And what happened? Rather than reveling in God’s abundant goodness toward them, Adam and Eve decided they knew better than God how to determine right from wrong. Adam disobeyed God’s command and ate the fruit from the Tree of Knowledge of Good and Evil.

In Genesis 3:14–19, we find that as a result of this disobedience—this sin, God placed a curse on His beloved creation. This was the just punishment for the commitment of high treason against the Creator of the universe.

And the world was no longer “wonderful.”

Think about the lyrics of Louis Armstrong’s song in relation to what God said about His creation:

 It will produce thorns and thistles for you,
    and you will eat the plants of the field. (Genesis 3:18)

When Louis sang about the red roses and how wonderful they were, did he mention the thorns that prick your fingers when you pick them? Not so wonderful, is it?

We can marvel at the beauty we see from the hand of God in our world today, but we can’t forget that we are living in a world that is suffering from the curse of sin.

In his letter to the people in Rome, Paul wrote:

For the creation was subjected to frustration, not by its own choice, but by the will of the one who subjected it, in hope that the creation itself will be liberated from its bondage to decay and brought into the freedom and glory of the children of God. We know that the whole creation has been groaning as in the pains of childbirth right up to the present time. (Romans 8:20-21)

Ladies, we live in a world that groans under the weight of the curse the Creator placed on it. Because of sin—Adam’s sin and your sin and my sin. Because, you see, none of us is perfect, are we? Even if we had been there in the garden of Eden, each of us would have also taken that fruit—none of us are completely innocent.

 The culmination of the Curse is death and the separation from God’s goodness forever.

In Genesis 3:19, we find this pronouncement to Adam:

By the sweat of your brow
    you will eat your food
until you return to the ground,
    since from it you were taken;
for dust you are
    and to dust you will return.

And later, God confirms this when He ushers Adam and Eve from the Garden of Eden, denying them access to the Tree of Life.

As accompaniments to this death, we have pain, suffering, disease, and . . . genetic disorders.

In this more general sense, Williams syndrome (along with all the various other genetic disorders and disabilities) isn’t God’s fault. Genetic mutations like the one my son was born with, disabilities, suffering, and pain are a result of no longer living in a “very good” world. So, did God create Williams syndrome in this sense? No—we, sinners in the hands of a holy God, are the responsible parties.

I can’t emphasize this point enough, friends. Louis Armstrong may see a “wonderful world” but the reality is that we live in a broken, cursed world that came about as a result of our sin.

However, there’s a more specific sense that I need to address, as well.

The Specific Sense

When we study God’s Word, we see that God, as the Creator, is sovereign over His creation. This means He is in control of His creation. He is not a laissez-faire, or hands-off, deity that wound up his creation and now lets it go as it pleases. He created it in the beginning and is still actively involved in sustaining His creation.

Let’s take a look at a few verses.

 Sovereign Lord, you have begun to show to your servant your greatness and your strong hand. For what god is there in heaven or on earth who can do the deeds and mighty works you do? Deuteronomy 3:24, NIV

And in Chronicles, we read:

 Yours, Lord, is the greatness and the power

    and the glory and the majesty and the splendor,
    for everything in heaven and earth is yours.
Yours, Lord, is the kingdom;
    you are exalted as head over all.

 Wealth and honor come from you;
    you are the ruler of all things.
In your hands are strength and power
    to exalt and give strength to all. (1 Chronicles 29:11–12, NIV)
And then from Nebuchadnezzar, that pagan king of Babylon:

At the end of that time, I, Nebuchadnezzar, raised my eyes toward heaven, and my sanity was restored. Then I praised the Most High; I honored and glorified him who lives forever.

His dominion is an eternal dominion;
    his kingdom endures from generation to generation.
All the peoples of the earth
    are regarded as nothing.

He does as he pleases
    with the powers of heaven
    and the peoples of the earth.
No one can hold back his hand
    or say to him: “What have you done?” (Daniel 4:34–35, NKJV)
 
And Nehemiah writes:

You alone are the Lord. You made the heavens, even the highest heavens, and all their starry host, the earth and all that is on it, the seas and all that is in them. You give life to everything, and the multitudes of heaven worship you. (Nehemiah 9:6, NIV)

These are just a few of the verses that let us see God’s sovereignty and teach us that He is in control. In fact, the message of His sovereignty is woven throughout the entire Bible.

Passages like these have helped me see how big God is. We don’t serve an impotent deity who is unable to accomplish His purposes or whose hands are somehow tied. We serve the living Creator of the universe who is in active control of His creation. The winds and waves obey Him. The sun rises and sets on His command. The stars move through their courses, doing His will.

God is sovereign over His entire creation—from the farthest star in the farthest galaxy at the farthest edge of the universe to my little life in a small house on planet Earth. And just as God is in control of the intricate workings of the universe, I believe He is also in control of the intricate workings of conception.

God takes credit for forming the prophet Jeremiah just as He wanted him to be.

“Before I formed you in the womb I knew you,
    before you were born I set you apart;
    I appointed you as a prophet to the nations.” (Jeremiah 1:5, NIV)

And David praises God for making him fearfully and wonderfully.

For you created my inmost being;
    you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.

 My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
¹⁶ Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be. (Psalm 139:13–16, NIV)
And Solomon reminds us in another Psalm that each child is a blessing from the Lord.

Children are a heritage from the Lord,
    offspring a reward from him. (Psalm 127:3, NIV, emphasis added)

From studying verses such as these in the Bible, we know beyond the shadow of a doubt that God is the author of life. He forms each one of us and knits us together while we are still in the womb. And He creates each of us in His own image—we are all image-bearers. And we use these verses with our healthy children—you were fearfully and wonderfully made by a loving Creator God, we say.

And yet, if God is the author of the lives of those with relative health, mustn’t we also say that God is the author of the lives of those who aren’t completely healthy and have physical, mental, or emotional problems?
Because of these teachings, and I want to be careful to allow God’s Word to teach me and not impose my ideas on Scripture, I can’t escape the thought that we are who we are—genetic mutations and all—as the result of God’s handiwork. In this more individualized sense, God gave our son (and each one of us) a specific genetic combination, which in our son’s case, included a deletion of part of one of his chromosomes. The world may call it a “spontaneous” mutation, but I call it a providential one.

Let me add a few caveats. I understand that our actions have consequences and, in some cases, the actions of parents before the conception and birth of their child can have dire consequences on the baby. For example, if a mother consumes too much alcohol, her baby can be born with fetal alcohol syndrome.

Photo courtesy of Laura Byers

 Or, something may happen to the baby while she is developing that results in life-long disabilities, such as happened with my cousin, Karen, who was born with hyrdrocephalus. The doctors didn’t catch it until she was three months old, leaving her severely disabled. Until she passed last year, she was unable to talk and spent most of her time in a wheelchair. However, I want to be clear that, even in these cases, God is still the ultimate author of her life and He is in control.

Let me add this thought, as well. The genetic mutation that pervades each cell of our son’s body has effects that can be seen more apparently—from his facial features to his heart and kidney problems to his learning disabilities. Yet each 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.

So at what point – or how many mutations – or which specific mutations separate the “normal” people from those with “disorders”? If 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”? How many mutations make someone abnormal?

 A friend of mine said in reference to those with apparent disabilities:

When it comes to disability, there is no “us” and “them”—there is only “us.” All of us.
Let me go a bit further.

When God called Moses to go to the Egyptian pharaoh and ask for the release of His people, Moses made excuses for why he couldn’t go by pointing out to his Creator that he was “slow of speech and slow of tongue.” The Lord said to him, “Who gave man his mouth? Who makes him deaf or mute? Who gives him sight or makes him blind? Is it not I, the Lord? (Exodus 4:11 NIV).

In this passage, God is taking credit for making some people blind and some deaf. Reflect on that a moment. God is taking credit for making some people blind and some people deaf. It’s no great extrapolation to also include that God creates some with genetic disorders and other things we consider “defects.”

The Goodness of God

Does this make God an ogre or less than completely good? Not at all. Because His very nature is good. Let’s remember what the Bible teaches about God’s goodness.

Good and upright is the Lord;
Therefore He teaches sinners in the way. Psalm 25:8, NKJV

Oh, taste and see that the Lord is good;
Blessed is the man who trusts in Him! Psalm 34:8, NKJV

The Lord is good to all,
And His tender mercies are over all His works. Psalm 145:9, NKJV

So He [Jesus] said to him, “Why do you call Me good? No one is good but One, that is, God. . . . Matthew 19:17, NKJV
There’s a mantra in Christendom that goes like this: God is good, all the time. Many times, Christians toss out that phrase, when for example, they were in a car accident and survived without any bodily harm. I am safe, they say, God is good. And yet, wouldn’t God still be good if the opposite were the outcome? If they had been badly hurt or even died? God would still be good.

We tend to talk about God’s goodness when things are going “good” for us—good as we define it. But He is good all the time. And whatever He does is good. This shouldn’t be a phrase that we just use when things are going our way or according to what we define as “good.” This should be ingrained in our hearts and minds so that we really do see God as good all the time.
Randy Alcorn, in his book If God is Good, writes:

“To say that God is good is not to say that God will always appear to be good, or that when he is good we will always like him for it.” (p. 166, If God is Good)

He makes an additional point about God’s goodness.

“We define our good in terms of what brings us health and happiness now; God defines it in terms of what makes us more like Jesus.” (p. 289, If God is Good)
So, to return to the question I mentioned before: “This is a problem I have wondered about—how physically imperfect newborns can be admired as "the handiwork of God," because it casts such doubt on God.”

If physically imperfect newborns are not the handiwork of God, then we are denying they are human. And we are saying each of us is not the handiwork of God because none of us is perfect. We need to allow God to be God—and God to be a sovereign and good God—all the time and in all situations. And to operate as He chooses within this cursed, fallen world that we’ve brought on ourselves. Including when He carefully and purposefully creates a baby that we consider “less than perfect.”
The Glory of God

So, why? Why does God do this? What is the purpose behind disabilities, pain, and suffering?

These are questions that have been wrestled with by countless people through the ages. So I just want to share a few basic things on what I’ve come to understand about the ultimate purpose behind these things.

First, I believe that He creates everyone for a reason: to bring glory to Himself.

The Lord says to Isaiah:

Everyone who is called by My name, Whom I have created for My glory; I have formed him, yes, I have made him. (Isaiah 43:7)
And Paul writes in his letter to the people in Rome:

For of Him and through Him and to Him are all things, to whom be glory forever. Amen. (Romans 11:36)

Next, I believe He fashions us as He does for our good.

This is an oft-quoted verse, but let’s read it one more time and think about what “all things” means.

And we know that in all things God works for the good of those who love him, who have been called according to his purpose. (Romans 8:28, NIV)

All things. Disabilities, suffering, pain included. He uses these things for our good in conforming us to the image of His Son.
Let’s look at this a bit further with the example given to us in John chapter 9.

As he [Jesus] went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”

 “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.” (John 9:1–3, NKJV)

Let me make a quick point here. Although mutations and diseases and disabilities and suffering are part of the Curse and are the result of our sin in Adam, they aren’t necessarily a direct result of a 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.

So why was he blind? Why does God make us—every one of us—the way He does? So that the works of God might be displayed in his life.

To relate this specifically to our son and his genetic disorder diagnosis, I believe that he (and each of us) is part of God’s plan to bring Himself glory—genetic mutations and all. Each of us is part of a beautiful mosaic of the work of God.

The Glory of God in Disability and Suffering

Now, in some cases, such as the blind man we just talked about, God’s glory is clearly manifested in a big way. God received the glory when Jesus healed the man of his life-long blindness. And when He healed many others throughout His ministry.

But this doesn’t happen to everyone with a disability. God doesn’t physically heal everyone on this present Earth. And not everyone is able to be a shining example to countless millions.

So what are the “works of God” in my situation? Ultimately, God works to save us and to sanctify us—to make us look more like His Son Jesus—and, in the process, allows us to be examples to others.

Let me share with you a few quotes from those who have disabilities themselves.


Photo courtesy of Dan Lietha

My friend Kevin was born with cerebral palsy. It affects his legs the most. Kevin is in a lot of pain on an almost daily basis. Something as simple as walking up stairs is difficult and painful for him. I asked Kevin to share with me how he views his cerebral palsy, and he said this:

"I look at having a disability as a blessing allowing me an opportunity to share my faith in ways that someone without a disability may struggle with. Growing up, I knew that God could and would use this for His glory if I allowed him to.

"Having a disability lends itself well when the discussion goes to "Why did God allow this to happen?" It’s been an encouragement to be able to share to others. My disability is a result of sin and the curse, but I am only truly "disabled" if I don’t allow the Lord to use me."

Did you notice how Kevin views his CP? He said it is a blessing. And that he’s been able to use it to share the hope he has. Is God glorified in his attitude and in his willingness to share with others? Absolutely. The glory of God is ultimately about conforming us as individuals to the image of His son and enabling us to share with others.

Listen to this quote by Vicki Anderson. Vicki was born with hypertelorism, which is a facial abnormality. She says

I don’t really like the phrase ‘birth defect’—it contradicts my theology. A ‘defect’ implies a mistake and I believe that God is sovereign. If he had the power to create the entire universe according to his exact specifications, then my face was certainly no challenge for him!

If God is loving, why did he deform my face? I don’t know—maybe because with a normal face I would have been robbed of the thousands and thousands of blessings that I have received because of my deformities.

It seems odd, but usually our greatest trial is what most molds and shapes us. It gives us character, backbone, courage, wisdom, discernment, and friendships that are not shallow.” Vicki Anderson, born with hypertelorism, a facial abnormality. (http://aboutfacenow.blogspot.com/2005_01_01_archive.html, “Hypertelorism”, accessed March 29, 2012)

Did you notice how comfortable Vicki was with accepting that her deformities came from the hand of God? She is glorifying God by submitting to His sovereignty and allowing Him to conform her to the image of His Son through her sufferings.

And now this by Nick Vujicic. Nick was born without arms and legs.

Due to the emotional struggles I had experienced with bullying, self-esteem and loneliness, God began to instill a passion of sharing my story and experiences to help others cope with whatever challenge they might have in their lives.

Turning my struggles into something that would glorify God and bless others, I realized my purpose! The Lord was going to use me to encourage and inspire others to live to their fullest potential and not let anything get in the way of accomplishing their hopes and dreams.

God’s purpose became clearer to me and now I’m fully convinced and understand that His glory is revealed as He uses me just the way I am. And even more wonderful, He can use me in ways others can’t be used.” Nick Vujicic, http://www.epm.org/blog/2012/Mar/14/nick-vujicic-he-uses-me-just-way-i-am

Elsewhere, he says, “If just one more person finds eternal life in Jesus Christ . . . it is all worth it.” http://www.lifewithoutlimbs.org/about-nick/

Nick hasn’t been healed from his disabilities, but he knows that God uses him just the way he is. And that using his situation to share the gospel of Jesus Christ with others brings glory to God.

When we allow the disabilities and trials that come our way to increase our faith in God and grow to be more like Jesus, we bring glory to Him and display His good works.

The Naturalistic Alternative

So, we’ve talked about the biblical teaching that God is always good and whatever He does is good. In fact, it’s because of His goodness and the standard He gives in His Word that we have a basis on which to declare right from wrong.

And it’s because He created two “very good” people in the beginning that we can say “This is how it should be,” “This is what God originally intended life to look like.”

I understand that it may be tempting to doubt God and His goodness when we’re put in situations like this. To return to the question I’ve been asking throughout this presentation:

 “This is a problem I have wondered about—how physically imperfect newborns can be admired as "the handiwork of God," because it casts such doubt on God.”
Does disability really cast doubt on God? Should it? When we wonder about God’s goodness in these situations, we’re defining what is “good” on our terms, not God’s. Remember, God’s ways are much better and higher than ours.

 “For My thoughts are not your thoughts, nor are your ways My ways,” says the Lord. (Isaiah 55:8, NKJV)

We need to allow God to be sovereign and good and to work all things according to the counsel of His will—within this broken, cursed, fallen world that we’ve brought upon ourselves.

When our youngest son Cael was a bit younger than he is now, for whatever reason, he enjoyed playing in the trash. He’d reach his little fingers up and over the lid of the trash can and grab whatever he could. Or, he’d drop something, on purpose in there. To him, the trash can was “good.” So he was understandably upset when I would tell him no, he may not play in the trash and took his hand away from it. But the reality is that I do know better than he does in this case. I know that the trash can—what he considers good—is filled with all sorts of things that will actually do him harm—raw meat, sharp lids, egg shells . . . . I know that the trash can isn’t what is best for him.

How many times is our definition of what is “good” the same as trash in the eyes of the Almighty Sovereign Ruler of the Universe whose very essence is good?

Many skeptics use people with disabilities to mock God. “How can there be a good God in the face of such debilitating disabilities?” they ask. And they use disabilities to dismiss God and claim that there is no God.

Let’s walk down that path for a bit and see what happens when we remove God from the picture.

First, let’s examine the worldview of those skeptics. They deny there is a God and accept that we are the result of molecules-to-man evolutionary processes. According to their worldview, we are simply the result of natural processes that have operated on chemicals over billions of years.

Consider what Julian Huxley, a famous evolutionist, said, “. . . man is just as much a natural phenomenon as an animal or a plant . . . his body, mind, and soul were not supernaturally created, but are products of evolution . . . .” (Julian Huxley, The Humanist Frame (New York: Harper & Brothers, 1961)).




Photo courtesy of http://en.wikipedia.org/wiki/File:Oliver_Wendell_Holmes_Jr_circa_1930-edit.jpg

And former Chief Justice of the United States Supreme Court, Oliver Wendell Holmes, stated, “I see no reason for attributing to man a significance different in kind from that which belongs to a baboon or a grain of sand.” (Richard Posner, The Essential Holmes: Selections from the Letters, Speeches, Judicial Opinions, and other Writings of Oliver Wendell Holmes (Chicago, IL: Chicago University Press, 1992).

If we are truly no different than a grain of sand, then who is to say the way one grain of sand is formed is any better (or worse) than the way another grain of sand is formed? Skeptics who don’t believe a good God exists have no ultimate standard by which to say that one sand grain is “good” while another sand grain is “bad.”  Therefore, they can’t hold the Creator accountable for doing something that they deem to be “wrong” since the concept of “wrongness” can’t logically exist in their worldview.

Photo courtesy of http://en.wikipedia.org/wiki/File:William_B._Provine,_HSS_2008.jpg

William Provine is an evolutionist and biology professor at Cornell University. He states, “Let me summarize my views on what modern evolutionary biology tells us loud and clear . . . .There is no ultimate foundation for ethics, no ultimate meaning to life.”

Nobel Laureate Steven Weinberg is an evolutionist and physics professor at the University of Texas. He states, “I think that part of the historical mission of science has been to teach us that we are not the playthings of supernatural intervention, that we can make our own way in the universe, and that we have to find our own sense of morality.”

If no foundation for ethics exists and if we have to find our own sense of morality, then on what basis can they say that God is “wrong” for creating some with disabilities? These skeptics don’t have a logical basis on which to say, “God cannot be good and allow birth defects at the same time” because they don’t have a logical basis on which to determine what is “good” in the first place.
A second point that I want to make here is this. Within their own worldview, people with birth defects and genetic disorders are considered the “trial and error” of evolutionary processes.



Photo courtesy of http://en.wikipedia.org/wiki/File:Francis_Galton_1850s.jpg

In fact, this is the basis for the eugenics movement. “Eugenics” is a term coined in 1883 by Francis Galton, who was a cousin of Charles Darwin, the man who gave us the basis for the modern-day idea of molecules-to-man evolution. “Eugenics” refers to “good in birth” or “well born.” This was a movement that began in the early 1900s that sought to rid the human race of the undesirables—such as those with mental and physical handicaps—by preventing those deemed “unfit” from having children.

One of the most well-known proponents of eugenics was Adolf Hitler. He went further than sterilizing those with disabilities, however. The Nazis actively killed those considered to be“genetically inferior.”

We recoil in horror at what has been done to those with disabilities in the past, but getting rid of those deemed “less than” the general population is the logical extension of an atheistic, evolutionary worldview. So why would those who hold to this worldview use genetic disorders and disabilities to argue against a good God? Why would they bother to be concerned about people with genetic disorders if they’re simply a bump in the evolutionary road which evolutionary processes will eventually work out?

The concern of the skeptics about those with disabilities is inconsistent with their worldview.

And when we doubt the goodness of God or deny His sovereignty over His creation, this is the path we begin to travel down. Is that really a place we want to be?

Eugenics Today

Sadly, eugenics didn’t end when the Allies conquered Hitler and the Nazis. It is alive and well today, too. One of the ways we see this is in the killing of unborn babies with disabilities, or, to use the vernacular, abortion.

Although there’s much good that can come out of prenatal testing, many parents use it to “screen” their baby.  
According to one researcher, “An estimated 92 percent of all women who receive a prenatal diagnosis of Down syndrome choose to terminate their pregnancies,” http://abcnews.go.com/Health/w_ParentingResource/down-syndrome-births-drop-us-women-abort/story?id=8960803

Nine out of ten babies with a certain chromosomal arrangement are killed while still in the womb simply because they have an extra chromosome. And how many other babies are killed because of other defects? I know of at least one little child who had Williams syndrome, like my son, whose parents killed him before he was born.

It doesn’t take much to extend the ability to take the lives of those with disabilities outside the womb. In fact, last year, two bioethicists published a paper suggesting just that. Using the term “after-birth abortion” instead of infanticide, they argued that if it were acceptable to terminate the lives of babies in the womb because of a discovered disability, then it should be legally acceptable to take the life of a baby soon after it is born based on that same criteria.

And really, why stop there? Ladies, this shocks and appalls us. We’re sickened when we hear things such as this. But, this is the logical extension of denying the good, sovereign Creator God of the Bible who creates some to live with disabilities and some to live with health for His glory and for our good.
In fact, the basis for the sanctity of life is found only in the pages of the Bible. God has created each and every human in His image and He has told us that because we are all—everyone of us—image-bearers, we are not to take the lives of other image-bearers, no matter how “disabled” they are.

Every child is a gift from God.  

And in God’s family, according to that brilliant Apostle Paul, “those parts of the body that seem to be weaker [such as those with disabilities] are indispensable” (1 Corinthians 12:22, NIV). Think about that for a bit.

Our Present Hope

And that brings me to my final point. I understand that having a disability—whatever it is—is not easy. I know that the suffering can be great. And that the pain can be debilitating and excruciating. And it is heart-breaking to watch your child suffer. And that the path through life with disabilities is difficult and hard. And contrary to what Mr. Armstrong thought, this is not a wonderful world.

But there is hope.

The same God who creates the blind and the deaf and those with genetic disorders also sent His own Son to take on the infirmities of flesh, live perfectly, and die and triumph over death to bring us eternal life.

And He promises that He will never leave us or forsake us.

The psalmist says, “The Lord is righteous in all his ways and loving toward all he has made.” (Psalm 145:17, NIV) Loving toward all He has made. Including those with disabilities.

When we received Kieran’s diagnosis, we spent several days in tears. We would wake up in the middle of the night, hoping that it was all just a bad dream. We would feel that kick in our gut all over again. And I’m convinced that it was no coincidence that the verses on the bulletin cover at our church that next Sunday were taken from this passage in Lamentations.

This I recall to my mind, therefore I have hope. Through the Lord’s mercies we are not consumed, because His compassions fail not. They are new every morning; Great is Your faithfulness. “The Lord is my portion,” says my soul, “Therefore I hope in Him!”

The Lord is good to those who wait for Him, to the soul who seeks Him. It is good that one should hope and wait quietly for the salvation of the Lord. (Lamentations 3:21–26, NKJV)

And we have experienced God’s grace and mercy every day. We’ve seen it evidenced in Kieran’s life, as well.

Sometimes the doctor visits and therapy sessions can feel overwhelming. The weight of caring for someone with disabilities can be unbearable.

 In light of this, you may have heard or said something like this, “God won’t give you more than you can handle.” While I could spend another hour explaining why I believe this statement is simply untrue, I’ll let Greg, a father of a severely disabled child, respond simply:

“My experience is that God will place a burden on you so heavy that you cannot possibly carry it alone. He will break your back and your will. He will buckle your legs until you fall flat beneath the crushing weight of your load.

"All the while He will walk beside you waiting for you to come to the point where you must depend on Him.‘My power is made perfect in your weakness,’ He says, as we strain under our burden.

 “Whatever the burden, it might indeed get worse, but I know this—God is faithful. And while we change and get old, he does not. When we get weaker, He remains strong. And in our weakness and humility, He offers us true, lasting transformation, and undeserved grace.” (p. 14, Wrestling With an Angel)

And God promises comfort to us when we need it.

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God. (2 Corinthians 1:3–4)

Our Future Hope

Joni Eareckson Tada is a quadriplegic. She became paralyzed from the neck down when she was in a diving accident over thirty years ago. She’s in pain every day. But she has used her disability to become a blessing to hundreds of thousands of people. She started the ministry “Joni and Friends” to help those with disabilities. Joni says:

 “God cares most—not about making us comfortable—but about teaching us to hate our sins, grow up spiritually, and love him. To do this, he gives us salvation’s benefits only gradually, sometimes painfully gradually.

"In other words, he lets us continue to feel much of sin’s sting while we’re headed for heaven . . . where at last, every sorrow we taste will one day prove to be the best possible thing that could have happened.” (Joni Eareckson Tada and Steve Estes, When God Weeps, (Grand Rapids, MI: Zondervan, 1997) 56.)

We not only have hope for our life here on earth, we have hope for our future life on the future earth. Those of us who have received the gift of eternal life look forward to the time when, after we die, the Lord will resurrect our bodies and will make us whole and complete, just as God intended for people to be when He created them in the beginning.

And God has promised a new heavens and earth where the curse that He placed on this current heaven and earth will be no more.

Now I saw a new heaven and a new earth, for the first heaven and the first earth had passed away. Also there was no more sea. Then I, John, saw the holy city, New Jerusalem, coming down out of heaven from God, prepared as a bride adorned for her husband.

And I heard a loud voice from heaven saying, “Behold, the tabernacle of God is with men, and He will dwell with them, and they shall be His people. God Himself will be with them and be their God. And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away.” (Revelation 21:1–4, NKJV)

I love how perfectly the end of the Bible dovetails with the beginning, don’t you? Seth and I look forward to spending eternity with Kieran. Only he won’t have the difficulties he has on this present earth—his body will be strong, his mind will be strong, he’ll be able to do the things he wants to do without effort or difficulty.

Paul encouraged the people in Phillipi, that, “we eagerly await a Savior from there, the Lord Jesus Christ, who, by the power that enables him to bring everything under his control, will transform our lowly bodies so that they will be like his glorious body.” (Philippians 3:20–21, NIV)

Joni Eareckson Tada again says,

“I still can hardly believe it. I, with shriveled, bent fingers, atrophied muscles, gnarled knees, and no feeling from the shoulders down, will one day have a new body, light, bright, and clothed in righteousness—powerful and dazzling.

"Can you imagine the hope this gives someone spinal-cord injured like me? Or someone who is cerebral palsied, brain-injured, or who has multiple sclerosis? Imagine the hope this gives someone who is manic-depressive.

"No other religion, no other philosophy promises new bodies, hearts, and minds. Only in the Gospel of Christ do hurting people find such incredible hope.” (Heaven: Your Real Home, p. 53)

“Joni once spoke to a class of mentally handicapped Christians. They smiled when she said that one day she would get a new body. But then she added, “And you’re going to get new minds.” The class erupted in cheers and applause. They knew what they most looked forward to!” (p. 301, If God Is Good)

God created my husband’s youngest sister with an extra 23^rd chromosome. This is a picture of her with Kieran when he was a newborn. Mimi has Down syndrome and lives with her parents. Once when we visited with them, we went out to eat at a restaurant. While there, I took our youngest son to the bathroom so I could change his diaper. Mimi was standing outside the stall. As I changed Cael’s diaper, I listened as she said to another lady, “Here I have something for you.” And she gave her a tract. Reading it, that lady said, “Do I know for certain that I’m going to heaven? Well, I hope so but I can’t be certain.” Mimi encouraged her to read the tract and to visit her church. She passes tracts out to just about everyone she meets without fear because she knows that people need Jesus in order to enter heaven.

There’s a lot I can learn from Mimi’s boldness, and I look forward to the time in heaven when people line up before her, waiting to shake her hand, and say to her, “Thank you for giving to the Lord. I am a life that was changed.” And she’ll understand exactly what they mean because she’ll have a resurrected mind and body.

While we may not have the running back and valedictorian we had originally planned on (although we’re giving him every advantage), we have the child God fearfully and wonderfully made and entrusted to our care for His glory and our good—the one whom we wouldn’t trade for anything. And Kieran has indeed been a blessing to us in so many ways. He has a quick smile, an empathetic heart, a love of music, and a love of people. And we can’t imagine life without him. 

If you are interested in learning more about what I’ve talked about today, let me recommend two books to you. The first one that I wrote, Why Is Keiko Sick? It’s a book for children that addresses death and disease. I wrote it before Kieran was born so I don’t necessarily touch on the topic of disability, but it is relevant to what we’ve talked about today.

And the second is a book by Ken Ham, How Could a Loving God? . . . In it, Ken deals with the topic of death and suffering from a biblical perspective in more detail than I was able to today.

Although I love Louis Armstrong’s song, I have to point out that we don’t live in a wonderful world, anymore, do we? But there is a wonderful, good, sovereign God and He was provided a wonderful way of salvation through His Son, Jesus Christ. We need to be sure that we're getting our view of the world from God and His Word and not from a song.

Let’s end by reading these verses together: “The Lord is God. It is he who made us, and we are his; we are his people, the sheep of his pasture. Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name. For the Lord is good and his love endures forever; his faithfulness continues through all generations” (Psalm 100:3–5, NIV).