DNA School Presentation

May is Williams syndrome awareness month and, today I went into both boys' classes to talk to them about Williams syndrome. I wanted to focus more on letting the kids know how special and unique each one of them is, instead of just talking about Kieran the entire time. 

I put together a PowerPoint presentation and afterward, we made "DNA" out of Twizzlers, marshmallows, and toothpicks (today was pajama day at school so the boys are wearing their pajamas). The kids seemed to enjoy it, and they also seem to remember stuff from previous years when I've gone into their classes. It was fun! 

This is a transcript of what we talked about (I'm not including all photos I used due to copyright restrictions). We were able to answer questions and discuss throughout a little bit more, but this is the gist of what we talked about.

So, today, we are going to talk about something that is inside the cells of all living things. It’s called deoxyribonucleic acid. Or DNA for short.

So, our bodies are made up of trillions of tiny cells all working together. Take a look at your skin. If we were to take just a little bit of your skin and put it under a microscope, this is what it would look like. Check out all those cells stuck together! They are all working together to keep your covered and keep you safe from things outside your body. 

And this is photo of just one of the cells in your body. Now, these cells are so tiny that we can’t see them just by looking at our skin, but when we put them under a microscope and blow them up really big, this is what it looks like. It’s an amazingly designed piece of machinery. Right here in the middle, is where the DNA lives.

Now, there is SO much DNA in each cell of your body that if you were take the DNA out of just one cell and stretch it out, it would be six feet long! Imagine all of that squished into each cell in your body! That means, if we took all the DNA from all of the cells of your body and put it end-to-end, it would stretch over 12 billion miles. That’s like going to the sun and back many times! Your body is filled with DNA!

Now, here’s an illustration of what scientists have figured out DNA looks like. It’s this amazing twisted molecule that in an amazing way tells you who you are. We get our special combination of DNA from our mom and our dad.

Let’s think about some of the things your DNA says about you. (I let the kids discuss eye color, hair color, how tall you could grow to be, nose shape, ear lobes, handedness, dimples, freckles, curly or straight hair, hand clasping, hairline (widow’s peak), skin shade, eye shape, food preferences, allergies, etc.) Each person is special and unique. Even identical twins have differences due to environmental effects and such. You are each one of a kind. There’s no one else exactly like you! You are special. Look at the person sitting next to you and say, “You are amazing and one-of-a-kind!”

Now, If we were to take out the DNA and sort it out and check it out under a really powerful microscope, this is what we find. Your DNA is bundled into structures called chromosomes. And, although we are all special and unique, we share a lot in common. What are some things we have in common? Two eyes, mouth, breathe air, ears, hair, body shape, arms, legs . . .  In fact, we are more alike than we are different!

So, we all share this number of chromosomes in our bodies. Now, sometimes, something can happen to our DNA so that it is missing a part or maybe there’s an extra piece than most other people have.

So, someone who was created with an extra 21st chromosome has what we call Down syndrome. Can you find the 21^st chromosome?

And our friend Kieran here was created amazingly with a small part of his seventh chromosome missing, and we call this arrangement Williams syndrome (it was named after the scientist who discovered it). It’s very rare that this happens and there just 30,000 people with Williams syndrome in the United States. Who can find the 7^th chromosome?

 With just that small part of DNA missing, that changes some things with people with Williams syndrome. Now remember, we are all more alike than we are different. But some differences that Kieran has, that you’ve probably already noticed are that he is sensitive to sounds. So, what does he do when he hears something that is loud, like the fire alarm? Yes, he puts his hands over his ears. He can also hear things that we can't because his hearing is more sensitive. So, when someone is using a lawnmower outside, Kieran would be able to hear it, even if you can't. And it may distract him.

People with Williams syndrome can also have heart problems. So Kieran has a heart issue called supra-valvular aortic stenosis. And he has to go to the doctor every few years to get it checked. We need to monitor it to make sure it doesn't get any worse. Sometimes people with WS need to have surgery on their heart to fix it. 

But, so far, Kieran's heart has been ok. 

People who have Williams syndrome can have some difficulties with learning. So where maybe math might be really easy for you, it's more difficult for Kieran to learn and remember math facts and things about time and abstract concepts like that.

Everyone who knows Kieran knows that he is what? Yes, he's super friendly. People with Williams syndrome are very friendly. He says hi to everyone! And whenever we go anywhere, he says hi to people he doesn't even know! 

Another thing about people with Williams syndrome is that they tent to love music! Kieran loves listening to music and playing music on different instruments. He has a didgeridoo and a nose flute!

And, when someone is a bit different from us, what can we remember? Each person is special and unique and created just the way they are supposed to be. And we are all more alike than we are different! We can focus on what we have in common, we can help where we might be able to, and we can look for ways to show that everyone is an amazingly designed person! There are no mistakes when it comes to who your are and your DNA. Each person is special and unique and you are just the way you are supposed to be! 

The Didgeridoo

This past Christmas, one of the gifts my parents gave to the boys was a subscription to Little Passports. They love getting mail (especially Cael) so the monthly deliveries are something for them to look forward to and there's a bit of learning involved, as well. Each month features a different aspect of world travel and one of the themes was music. Individuals with Williams syndrome (the genetic disorder Kieran was born with) have a special affinity for music and Kieran is no exception, so that particular month was of particular interest to him. One of the instruments highlighted in the materials that came was the didgeridoo, one of the oldest wind instruments developed by Australian Aborigines.

My mom and I went to Australia in 2001 (shortly before I met and married Seth) on a tour with a few friends. We got to see a demonstration of a didgeridoo and my friend Dan tried it out. So I pulled out my pictures for the boys, showed them Dan playing the instrument, and then we watched a few YouTube videos of people playing them so that Kieran could hear what they sound like.

A few months later, Kieran asked his speech therapist if she knew what a "hullabaloo" was. It took me a few days to realize that he really meant a didgeridoo. Since then, didgeridoos have been a chosen topic of conversation. So much so that our AV/guitar/musician guy at church, whom Kieran had apparently been chatting with, brought in a didgeridoo his family had given him and let him play it. (Just as a side note -- we are so blessed by our church family who are so gracious and loving toward Kieran and all his quirks.)

Kieran was thrilled. Of course, that increased his perseveration on the topic. Although we've gotten quite a few instruments for Kieran over the years (a piano, recorder, guitar, violin, rhythm instruments, harmonica . . .), I figured this was one we would need to forego. I couldn't imagine finding an authentic didge and then having it shipped without a lot of expense. Seth, however, told him he would make a didgeridoo for him out of PVC pipe. So he did. He put a few pieces of connectors on the top and bottom at first.

But then decided that to make it an "authentic" didge, he would need to flare the bottom. So he did. With a heat gun. And then he got some type of coupling for the top mouthpiece and painted it brown.

And Kieran now has his very own "didgeridoo" to play.


It's been a bit surprising to see Seth take an interest in playing it, too. He's never had much interest in playing instruments or even singing, so it's been fun to see him find an instrument that he and Kieran can enjoy together. They've watched a few how-to videos and have started practicing their newfound didge skills.



Is there a place for the didgeridoo on the worship team at church? As a bass for the recorders in fourth grade? As a way to make a living? Who knows. For now, they're content to enjoy the didgeridoo they made together.

The Kindness of a Doctor

The other day, I took the boys to see the doctor so that Cael could be brought up to date on his vaccinations before we register him for kindergarten next month (is that really possible?!). I waited until the morning of the appointment to tell the boys because I knew the thought of it would cause Kieran (not necessarily Cael) some consternation. He made sure that it wasn't he who would be on the receiving end of the treatments and was very sad (almost to the point of tears) that Cael would need to go through this trial. And he talked about it the rest of the day. 

When we went in to see the doctor, Kieran tried to get out of the exam room by excusing himself to the bathroom. When that didn't work (he couldn't spend too long in there), he tried talking to the doctor himself. He told him that Cael was there for shots and that there would be pain. I explained that he was concerned about Cael and that he wasn't thrilled with being there. 

Having treated Kieran since birth and being familiar with his extreme anxiety during office visits (even when they're not for him), Dr. D was very understanding. He said, "Of course you are. You are . . . a very understanding big brother." I don't know why he paused or what he was originally going to say, but I appreciated his willingness to extend comfort to Kieran. Then Kieran asked about his office, and Dr. D very kindly invited him to go see the plants in his office while Cael got his shots. I never would have expected that to be the outcome or a way for Kieran to avoid the situation, but I'm thankful for Dr. D's thoughtfulness in helping Kieran (and me) through the ordeal. 

Meanwhile, back in the exam room, Cael hopped up on the table, shuddered a bit during the shots, got some TMNT bandages, and then hopped back down without saying a word. He was thrilled, too, with the Spiderman and TMNT stickers the nurses gave him afterward. 

We celebrated afterward with ice cream. (Kieran got a peanut butter milkshake.) 

Kieran survived yet another doctor visit. . . . And so did Cael. To quote Pa Ingalls, "All's well that ends well." 

He swims

My dad earned one of his Boy Scout merit badges in swimming and life guarding and life guarded for Scout activities. My mom is a swimmer, Seth learned to swim at an early age and became a certified SCUBA diver during his time in the Navy, and I also took swim lessons. We all wanted the boys to learn to swim but in our area we don't have much access to lessons. So this past summer, the boys and I traveled to my parents' place so that they could take swim lessons at a local Y. They each had 6 lessons but because of the schedule and the thunderstorms that roll through Florida most summer days (the pool closed when lightning was in the area), we weren't able to fit them all in. So we finished them when we returned to Florida for our Christmas visit. 

Kieran really enjoyed the lessons. He quickly learned to float on his back and was eager to learn to go underwater when we picked up the lessons again. He had been practicing putting his face in the water during bath time. Seth has worked a lot with him on getting him comfortable in the water during his baths over the past seven years (from overcoming his fear of being in the water to getting used to having water on his face to getting him to put his head back and lay down in the tub), and it's really paid off. He loves being in the pool now. And we're so proud of how much he picked up at the lessons. I only wish we had easy access to a pool so we could continue his progress. 

One of the interesting things his instructor mentioned was that she had never had a student who could hear underwater as well as he could. She could be a few feet away talking in her normal voice and he could clearly hear her when he was backfloating with his ears in the water. She mentioned that he had told her, "You don't have to shout, I can hear you." I tend to think of the hyperacusis that accompanies Williams syndrome when he has trouble with the sound of, say, weed wackers and needs to put his ear protection on or when he can hear a lawn mower being used several streets over or comments on the hum a computer is making in the background. I hadn't thought of it in relation to hearing well while under water. Or in relation to hearing overly well in general (there are often times I need to tell him something several times before he responds -- selective hearing, perhaps?).

His hyper-sensitivity to sound came up today, as well, when we went to the beach. We had been a few times the past few days and he hadn't wanted to be near the water. I didn't know why until today when, on the way to the beach, he put on the ear protectors he had brought. I asked him why and he said he wanted to wear them because the sound of the waves was too loud.

Cael, on the other hand, loved jumping in the waves.

And they both had fun working on a sand castle with Seth.

The Piano Player

If you've been around here for awhile, you may remember that many years ago, shortly after receiving Kieran's diagnosis, we bought a piano with the thought that it would be a good instrument for Kieran to play. (Here's the original post.)

He's been tooling around on it over the years, and I occasionally sit down with him and play it. He eventually started finding octaves and then chords. And just recently has started putting notes together in his own little song, which today he told me was called, "The United States of America."

I don't want to turn into one of those homeschool moms who thinks that everything their child does is just the best because they have no one else to compare their kid to and don't realize that, in fact, other children are doing the same exact thing because it's what children do without being called The Next Child Prodigy, but I am encouraged that he's doing more than just pound on the keys and is developing somewhat of a feel for rhythm.

 

Maybe it's time to start actual lessons with him. Who knows . . . maybe he will turn into the next great Disney piano player . . . .

  

Can you see it?

I saw it. This morning, when I let the chickens out of the coop, which protects them from the bobcats and raccoons and coyotes. And in the fact that we even have chickens in the first place. 

I saw it when we went for a walk down the lane. 

I saw it in the abundance of beautifully designed greenery for us to enjoy -- an amazing variety of trees and birds and insects. 

And I saw it in the thorns that grew right alongside the pretty wildflowers. 

I saw it in the poison ivy that we continually tell the boys to watch out for. Cael practices his counting on the leaf clusters we find. "Leaves of three, let them be." 

I saw it in the rocks filled with fossils that line our creek bed and road. 

I saw it in the dead frog we found on the road, a casualty of a fast-moving vehicle. 

I saw it in our Resurrection Lilies. Beautiful flowers that give their pollen to bees that will sting if we bother them. 

I saw it as he struggled to throw rocks into the creek, while his brother tossed with ease. 

I saw it when he cheerfully, and without my asking, vacuumed the floor this morning, and then whined and complained while we went for the walk. 

I saw it in his answer as we discussed the reason for all these things: "But it was Adam and Eve's fault. It's not my fault." 

I saw it in little boy struggling with cancer, in a friend's troubled marriage, in a soldier separated from his family because of war, in emails about helping orphans in Nicaragua and saving babies from death and dismemberment in America. I saw it in the very food we ate -- the chicken we had for supper and the ham we had for lunch. 

And I saw it in myself -- in my impatience with the boys, in my pride, in my selfishness. 

Can you see it? When you look around, do you see a beautiful world originally created by a good, loving God and now scarred and crippled by the Curse brought by sin? The sin of Adam and Eve -- and the sin of me and you. I reminded him that this is our fault -- we disobey the commands of the Creator every day. None of us is without sin. This world that we now live in is the one of our making -- it's the world we said we wanted when we told God we do would do things our way. 

We take life instead of give it. 

We hate instead of love. 

We speak lies instead of truth. 

We are proud instead of humble. 

We are selfish instead of breathing grace. 

We are mean to other image-bearers instead of extending kindness to all. 

We profess our selves to be wise instead of admitting we know next to nothing. 

We kick against every beautiful quality of the sovereign Creator of the universe. And we live with the sad and ugly effects of this all around us:

The thorns that came when God cursed the very ground He had created to give us abundant life;

The plants that give us rashes instead of health as they were originally designed to do;

The animals that died in the Flood (a worldwide result of sin) and whose remains we find as fossils;

The death that was and is the ultimate punishment for our sin;

The accompaniments to death -- the sickness, the disease, the disabilities, the suffering, the pain, the brokenness. 

Sometimes the weight of what I see is overwhelming. And I hate it. I hate seeing what I have done to this world. 

But I love knowing that there is a living, loving, truthful, gracious, kind, all-wise, and good God that I can run to. The very one that created me in His own image. 

And that His Son, the perfect Jesus Christ, clothed Himself with flesh, humbled Himself, and became obedient to the very punishment He subjected His creation to -- the death I deserve. For my sake. 

And that He showed His power over death when He rose from the grave -- an event that was substantiated by over 500 eye-witnesses. 

And that He mercifully grants redemption from this Curse to those who forsake what they've done -- these sins -- and believe in Him and His payment for sin on our behalf. In His kindness -- in allowing us to truly see the effects of our sin --  He leads us to repentance. 

And that He graciously offers the promise of restoration to that original way of life -- the one that clearly reflected His nature -- those who have received the gift of eternal life. 

I'm so thankful for the hope He holds out to His image-bearers -- to all who repent and believe. 

And I'm so thankful that He hears our cries for mercy. 

And I'm so thankful for the promise of that future day when there will be no more tears, no more pain, no more crying. Just joy. And life.  

Can you see it? 

Wheels for Williams 6

As I'm sure you've heard me say before (if you've been around here long enough), May is Williams syndrome awareness month. Part of that includes events that are dedicated to raising awareness of the syndrome and also to raising funds to help support the Williams Syndrome Association. 

According to my friend Erin (whose daughter has Williams syndrome), this is the purpose for fundraising this year: "This year we are raising money for the continuation of neurocognitive research that is helping kids with Williams Syndrome EVERY DAY by producing the science that helps educators test and teach our children better. This research has changed the trajectory of the lives of children who have WS. Additionally, the Williams Syndrome Association is also earmarking funds for a study of sudden death during surgery/anesthesia - a phenomenon that is long overdue to be studied. This phenomenon has been both random and completely unexplained until now. NIH funding for these studies as a rare disease has been halted. This year more than any other, fundraising for the association is a must."

Since we've become involved in the WS community, we've seen several (too many) children with WS pass away due to unexplained complications with anethesia during necessary surgeries (such as open heart surgeries to correct the heart defects common in people with WS). So this type of research has the potential to be life-saving and to even impact Kieran should he need the surgery some day.

If you'd like to make a donation in Kieran's name to the Williams Syndrome Association, please visit this link.

The event that we go to every year is about 2 hours away and is called Wheels for Williams. The host is a part of a car club, and they put on a drive-in for anything that has wheels.

There are several families in our general area that come each year and it's always nice to catch up with them. This year, I was thrilled that my good friend Georgia and her family offered to come with us. It meant so much to me to have them there in support of Kieran and the others with Williams syndrome.

Kieran loved the little electric cars that were there, and Elizabeth (Georgia's daughter) was great at keeping an eye on him and making sure he didn't wander too far in them.

A band plays each year, and this year the band returned from a few years ago. They had actually requested to do today's event. During one of their breaks, the guitar player came over to where we were hanging out and began talking to me.

He said that his brother's eight-month-old grandson recently had open-heart surgery and had been diagnosed with Williams syndrome shortly after his birth. He said that after the family got the diagnosis, he told them, "Oh, I've met kids with Williams syndrome before. They're great -- he'll be ok." He was able to encourage them that the diagnosis wasn't the end of the world because he had been at the Wheels event before and had met our kids and knew how great they were.

This was the car we picked to win
the Williams Syndrome Families Trophy

He also said when they were touring England, he met a man whose relative (I don't remember the relation) had Williams syndrome. It was neat to see that the "awareness" events were having an impact and enabling him to become an ambassador for Williams syndrome.

There are several families that come whose kids with WS are all about the same age -- Kylie, Jonah, and Braxton.

I think they were telling each other how glad they were to be friends.

The dad of the older guy with WS in the photo is the one who donated the fire ring I bought last year (and currently have sitting outside our door with a flower pot inside it). He brought another one this year but since we'd ferried bikes in the back of our car, I didn't think we'd have room to bring another one home.

Cael had fun being chauffeured and also doing some of the driving himself.

A fire-shooter car was there again and gave us a good show, even in the rain. 

Thanks to Kirby for hosting another great event and to Georgia, Chris, and Elizabeth for attending with us! We appreciate you! 

"I believe . . . "

When Kieran was diagnosed with Williams syndrome and we tried to peer through the thick fog that had become his future, I grieved for the unrealized dreams we never even knew we had for him. One of the biggest, for me, were conversations with him, as he grew older, about spiritual things. We didn't know to what degree the syndrome would affect him cognitively, and it made me sad to think that perhaps he wouldn't be able to understand biblical teachings and come to know and love Jesus in a personal way. I didn't realize, until the diagnosis, how much I had been looking forward to chewing on the meat of God's Word with my children as they aged. And it broke my heart to think that that may never happen with him.

But, after we began meeting people within the Williams syndrome community, I found several individuals who knew and loved Jesus and could articulate their faith in discussion. I was encouraged, and we've been teaching Kieran about biblical things since he was young. He's memorized several Bible verses at this point, and I'm going through the "First Catechism" with him (and Cael), and he's been working on memorizing the answers to those questions. (Not because I think that knowing the catechism will grant him eternal life -- repentance of his sin and his personal faith in Jesus Christ alone does that -- but because, to me, a catechism is an easy way to organize theology and make sure we're covering the various spiritual "bases.") He also likes listening to these catechism songs while we're driving in our car.

And, he's taken to preaching to his grandparents on Skype (and also to the chickens):



Tonight, when I got home from a meeting and went in to say goodnight to the boys, he said to me, "I believe in Jesus Christ." (He likes the Newsboys song, "We Believe.") Of course, then he asked who Jesus Christ was and so we talked about that for a little bit. But it made my heart happy to hear him giving voice to truths that I wasn't sure, just a few years ago, he would be able to embrace. And, it made me even more mindful of how and what I teach these boys--both by my words and by my actions (and how much I need to rely on Jesus to help me live out my faith authentically before them).

God is good -- all the time.

(As a funny PS about Cael:
We were talking about the sun the other day and how God made the sun.
Cael said, "God is the sun."
I explained that God wasn't the sun but that He made the sun to give light to us during the day.
Cael said, "Yes He is. God the Son. God the Father. God the Holy Spirit."
We still have a bit of sorting out to do of the details, but I'm so glad they're getting the basics.)

What NOT to Say: Truthfully Helping Those with Disabilities See God's Goodness

I'm giving a presentation at the Answers for Women Conference in a few weeks. The transcript of that talk is here. I invite your feedback on it.

What NOT to Say: Truthfully Helping Those with Disabilities See God's Goodness

Hi there. Thanks for joining me as we discuss “What NOT to say: Truthfully Helping Those with Disabilities See God’s Goodness.” I’m grateful for this time that we get to spend together this afternoon talking about how God’s Word informs our understanding of those with disabilities and some practical ways we can help those with special needs.

Let’s begin by finding out how many of you know someone with some type of disability? 

I suspect that, even if you aren’t aware, all of us do know someone with some type of disability—whether it’s cognitive, sensory, physical, social, or something else. In fact, over twenty percent of people in the US have a disability.

To give you an idea of where we’re going during this session, I want to spend the first part of our time going through a biblical perspective of disability and why this is important, and then the remaining time dissecting some often used phrases in the disability world along with some practical ways you can help those dealing with disability.

Let me begin by sharing with you our journey with disability.

Kieran is our oldest son. He’s a happy little boy who loves to read books and play with his LeapPad and go outside and wander around with our chickens and play hide-and-seek with us. He loves to laugh and he enjoys riding his bike. He brings us great amounts of joy, and we are blessed to have him in our lives.


He’s six now, but when he was nine months old, he was diagnosed 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, cognitive, and developmental disabilities. It is considered a “spontaneous” mutation, meaning my husband and I aren’t carriers of the disorder.

As part of his syndrome, Kieran has a heart condition called supravalvular aortic stenosis, which requires periodic monitoring. He has cognitive disabilities and physical disabilities such as low muscle tone, making it more difficult for him to write and coordinate his movements.

But we’re thankful that the Lord created him fearfully and wonderfully and gave him to us.
Does it surprise you to hear me describe him that way? As “fearfully and wonderfully” made?

In response to comments like these, 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. 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 anyone with a disability, fit into this worldview?

Another lady asked a question along those same lines, “Did God create Williams syndrome?”

These are important questions to answer, for ourselves as well as for the generations coming after us—those with disabilities and those without. Because our children may one day grow up and give birth to a baby with a disability. Or may be faced with a personal disability in the future. And how we teach them about disability today will inform their actions tomorrow. Sadly, too many parents have chosen to kill their unborn babies once they found out the baby would be born with a disability.

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

And how many other babies with other types of disabilities (including Williams syndrome) are killed while still in their mother’s womb?


Abortion is not the only possible outcome for those who don’t understand God’s heart in disability. Far too many have rejected God and the Christian faith once their child was diagnosed with a genetic disorder or some other type of disability. We need to make sure that we’re encouraging a robust faith and a proper view of God in ourselves and in our children today.

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 problem of “Is God the author of pain and suffering?” And, Dr. Purdom addressed this topic yesterday, so I won’t go over this in great detail again.

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.

Then God saw everything that He had made, and indeed it was very good. So the evening and the morning were the sixth day. (Genesis 1:31, NKJV)

I believe He designed the universe so that everything would work together for His glory and our good.

God created the first man Adam in His image from the dust of the ground. He gave the first man (and a short while later, the first woman) 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.

But, by studying Genesis 3, we know that things did not stay the way they were 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.

Adam disobeyed God’s command and ate the fruit from the Tree of Knowledge of Good and Evil.

And as a result, God placed a curse on His beloved creation—the just punishment for the commitment of high treason against the Creator of the universe. The culmination of the Curse is separation from God forever through death. As accompaniments to death, we have pain, suffering, disease, and . . . genetic disorders and disabilities.

The Apostle Paul reminds us of this in his letter to the church in Rome,

“For the creation was subjected to futility, not willingly, but because of Him who subjected it in hope; because the creation itself also will be delivered from the bondage of corruption into the glorious liberty of the children of God. For we know that the whole creation groans and labors with birth pangs together until now.” (Romans 8:20–22)

Let me underscore this point again: this world that we live in today is not the very good world God originally made. We are now living in a world that groans under the weight of the curse placed on it by its Creator as a result of our disobedience.

A world where death is an enemy (1 Corinthians 15:26). But it’s an enemy that we all have in common and so it’s a normal enemy. Sadly, it happens every day. And it will happen to every one of us.

And everything that comes with death—disease, suffering, and disability—are now normal parts of this world. About 50 million people in the US live with some type of disability. In other words, one out of every five people are acquainted with disability in some way. The reason that we’re saddened and shocked by disability is because we all know, deep down, that this isn’t the way it’s supposed to be. We now live in an abnormal world where disability is the norm.

In this more general sense, Williams syndrome (along with all the various other genetic disorders and disabilities) isn’t God’s fault. Genetic mutations (including spontaneous deletions on part of the seventh chromosome), 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.

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.

In Chronicles, we read:

Yours, O Lord, is the greatness,
The power and the glory,
The victory and the majesty;
For all that is in heaven and in earth is Yours;
Yours is the kingdom, O Lord,
And You are exalted as head over all.

Both riches and honor come from You,

And You reign over all.
In Your hand is power and might;
In Your hand it is to make great
And to give strength to all. 1 Chronicles 29:11–12, NKJV

And then from Nebuchadnezzar, that pagan king of Babylon:

And at the end of the time I, Nebuchadnezzar, lifted my eyes to heaven, and my understanding returned to me; and I blessed the Most High and praised and honored Him who lives forever:
For His dominion is an everlasting dominion,
And His kingdom is from generation to generation.
All the inhabitants of the earth are reputed as nothing;
He does according to His will in the army of heaven
And among the inhabitants of the earth.
No one can restrain His hand
Or say to Him, “What have You done?” Daniel 4:34–35, NKJV

And Nehemiah writes:

You alone are the Lord;
You have made heaven,
The heaven of heavens, with all their host,
The earth and everything on it,
The seas and all that is in them,
And You preserve them all.
The host of heaven worships You. Nehemiah 9:6, NKJV

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, isn’t it?

These verses 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 sanctified you;
I ordained you a prophet to the nations.” Jeremiah 1:5, NKJV

And David praises God for making him fearfully and wonderfully.

For You formed my inward parts; You covered me in my mother’s womb.
I will praise You, for I am fearfully and wonderfully made;
Marvelous are Your works,
And that my soul knows very well.

My frame was not hidden from You,
When I was made in secret,
And skillfully wrought in the lowest parts of the earth.
Your eyes saw my substance, being yet unformed.
And in Your book they all were written,
The days fashioned for me,
When as yet there were none of them. (Psalm 139:13–16, NKJV)

 “Behold, I am the Lord, the God of all flesh. Is there anything too hard for Me?” (Jeremiah 32:27, NKJV)

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 carefully and purposefully while we are still in the womb. 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.

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 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 unable to talk and used a wheelchair to get around. 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?

One theologian defined “disability” this way, “the degree to which we are able to fulfill the mandate God gave Adam in the beginning—to be ‘fruitful and multiply; fill the earth and subdue it; have dominion over the fish of the sea, over the birds of the air, and over every living thing that moves on the earth.’” (Genesis 1:28) (Mark Talbot, http://www.desiringgod.org/resource-library/conference-messages/longing-for-wholeness-chronic-suffering-and-christian-hope#/watch/full)


How many of us can say that we’re able to perfectly fulfill this command?

To paraphrase a friend, “When it comes to disability, there is no ‘us’ and ‘them’—there is only ‘us.’ All of us.” (Calvin Clark, personal correspondence)


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.

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 those with disabilities are not the handiwork of God, then we are denying they are human. We are denying they are image-bearers of the Creator. 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 with great purpose creates a baby with disabilities.

The Glory of God

So, why does God do this? What is the purpose behind disabilities, pain, and suffering? This is a question that theologians have raised for centuries, but let me offer these basic points.

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)

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


Let’s look at this a bit further with the example given to us in John chapter 9.

Now as Jesus passed by, He saw a man who was blind from birth. And His disciples asked Him, saying, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “Neither this man nor his parents sinned, but that the works of God should be revealed 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. Two thousand years later, we’re still reading about this man and learning from his situation. For two thousand years, the testimony of the man who was born blind has been encouraging and blessing people and displaying God’s glory.

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.

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. And 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.

So, ok, 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)).

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.

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.”³

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.


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 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 here’s the important point for Christians to hear. 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?


Friends, 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 the Apostle Paul, “those parts of the body that seem to be weaker are indispensable” (1 Corinthians 12:22, NIV).

Let’s think about that for a bit in relation to those with disabilities. Do you view people with disabilities as an indispensable part of your life?

So, let’s move on to talking about some ways we can practically embrace these indispensable ones and their families. 

What NOT to Say

Let’s start this section of the presentation with a little game called a sword drill. Do you remember what that is from your Sunday school days? This is a modified version of that. I’ll give you a phrase and then we’ll see who can find it first in their Bibles. I’m hoping you all brought your Bible – either a printed one or one on your smart device. So grab your Bibles and hold them up. When you find the verse, stand up, and let us know where you found it. Ok, ready?

This is a phrase that is often said to those dealing with disability. Here’s the phrase: “God won’t give you more than you can handle.” Go!

If someone brings up this verse, say: No temptation has overtaken you except such as is common to man; but God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will also make the way of escape, that you may be able to bear it. (1 Cor 10:13)

First, this passage, in context, is talking about temptations to sin -- sexual immorality, idolatry. It's not dealing with life issues, in general. Second, notice that even in this situation, God doesn't leave us to our devices when we're fighting temptation -- HE is the one who provides the way of escape and helps us to flee temptation.

So, you didn’t find it? Oh, I see. So, it’s not in the Bible then? Hmm. Then why do many of us toss out this phrase – and even think it to ourselves – when we’re with those with disabilities, or who are suffering in general?

In this section of the presentation, I want to deal with several phrases that people in the disability world have heard countless times but that simply aren’t true or helpful. My intent during this portion is to not only step on your toes but to jump all over them. SMILE.

Not because I want to hurt you but because I want us to think about what we say. Does it really reflect God’s heart in disability? Is it true? My purpose isn’t to discourage you from ever talking to someone with disabilities; my purpose is to encourage you to say true, helpful things to those walking the hard path of disability. You don’t want them to look at you and think, “While you’re at it, why don’t you give me a paper cut and pour lemon juice on it!” Right? SMILE.

And, in return, I’ll offer some things you can say and also some practical things you can do.

God Won’t Give You More Than You Can Handle

Let’s take a look at the phrase “God won’t give you more than you can handle” in a little more detail and think through some things to say and do instead. I also want to introduce you to friends of mine who are in a situation that they’re finding more than they can handle. 

First, let’s take a look at a passage from 2 Corinthians  chapter 1, verses 8 through 11. This is Paul writing to the church in Corinth. This passage isn’t in specific reference to disability, but let’s see what it can teach us about this phrase “God won’t give you more than you can handle.”

We do not want you to be uninformed, brothers and sisters, about the troubles we experienced in the province of Asia. We were under great pressure, far beyond our ability to endure, so that we despaired of life itself. (verse 8, NIV)

Does that sound to you like Paul was dealing with more than he could handle?

Indeed, we felt we had received the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us again. On him we have set our hope that he will continue to deliver us . . . . (Verses 9–10, NIV)

What does Paul say was God’s purpose in his affliction?

So that he should not trust in himself but in God. When we say “God won’t give you more than you can handle,” who are we encouraging people to trust in? Themselves, yes.

Think about this: if we could handle everything that comes our way on our own, would we have any need for God?

Paul goes on:

as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many. (verse 11, NIV)

What helped Paul get through his trial? The prayers of many. I have been so blessed over the years since Kieran’s diagnosis to have friends tell me they were praying for our family, and to know that they meant it. And even more so when they tell me specific ways they’re praying: that the Lord would give me wisdom in making decisions about Kieran’s therapies and schooling; that the Lord would help Kieran; that He would help Cael learn to be a good brother and advocate and champion for Kieran.

Let me add this aside – if you tell someone you’re praying for them, you better actually do it. Do you think it pleases God when we lie about something as intimate as speaking with the Creator of the universe on behalf of another?

You can absolutely bless and participate in the lives of those with disabilities by beseeching the omnipotent God for them. But let me further add this. Sometimes, we use the “I’ll pray for you” statement as an excuse for doing nothing else. “Well, I prayed for them,” we think. “So that crosses off my duty to them any further.”

Cecil and Vicki are friends of mine. Their son Luke has dealt with epilepsy from a young age. In recent years, however, he has become more profoundly disabled. At one point, Luke was able to function and attended college. After school, he secured a great job and was able to work, live on his own, and drive with his seizures under control. Several years later he got married and bought a home. Six months after getting married, his epilepsy became uncontrolled. As a result, he lost his job, his wife (who divorced him when his epilepsy continued to spiral out of control), his ability to drive, and his home. He is now living with his parents. Later his parents found out that he also has a serious case of Lyme’s disease which is aggravating the epilepsy.

Cecil and Vicki are his constant caregivers. Luke has an average of 2 to 4 weekly nocturnal seizures (they occur while he is sleeping). His parents are with him each time he seizes. This makes it difficult as they live with broken sleep as well as Luke. Even though Luke doesn’t wake up after the seizure, he is affected as if he worked an 8 hour day physically which keeps him continually exhausted as well. Due to brain inflammation from seizure activity, Luke’s cognition is greatly affected. He often needs assistance dressing and bathing. He needs to be helped to the bathroom in the middle of night (especially after a seizure) and at times, even with eating. His basic communication skills have been greatly compromised.  Luke often understands but cannot verbalize his thoughts

Vicki has had to reduce the number of hours she works outside the home so that she can stay at home to care for Luke.

They’ve heard countless times from their church family and their friends, “Hey, we’re praying for you.” But, for the most part, that’s all the farther it goes. They need those prayers, absolutely. But they would also be immensely blessed by more tangible expressions of God’s grace in their situation. Quite often, God uses His people to answer prayers. Cecil and Vicki don’t need to be reminded about God’s grace—they need to experience God’s grace through the physical help of their friends and family—they need you to be the answer to their and your own prayers.

These are some ways that you can help families like Vicki and Cecil. Often, the care of someone with a profound disability is so constant that even a quick trip to the grocery store is difficult. The caregivers can’t take him with them and they can’t leave him alone. So, you could call and say, “Hey, I’m running to the grocery store later today, if you make a list of what you need, I’ll pick it up for you and deliver it.” 

Or, you could offer to stay with the person receiving care for a few hours a week to give mom some time to grocery shop, to get her hair cut, to have lunch by herself or even with another friend, to do anything she wants, really. You could stay with the child one Friday night a month to give the parents time for a date night by themselves.

Allow yourself some time to spend with the parents in order to find out the different care guidelines they have. It can be scary to walk into something like this, but the parents will be more than happy to walk you through what needs to be done, write out instructions, and give you their cell number in case you need to call with questions. God has given them grace to walk this path of disability, and He will give you grace as you determine to walk the path with them.

Many parents aren’t able to attend church due to their child’s disabilities. Yet, remember, the child is indispensable to the body of believers. Instead of just saying, “We missed you at church today,” how about saying, “Hey, I’d love to fellowship with you for an evening. Can I bring supper and spend some time finding out how things are going with you?”  And then be prepared to listen.

Cecil has told me he’s found there’s a very real ministry in silence. You don’t need to offer trite sayings or even anything profound. Just listen as they pour out their heart to you about the latest therapy they’re trying or what has been especially difficult for them lately. Be a minister of God’s grace through your willingness to listen and your physical presence.

Friends, disability is hard. It can be emotionally draining and physically exhausting. You might think about friends like Vicki and Cecil once a week when you miss them at church, but their thoughts are constantly on Luke and his needs. They don’t ever take a break from that. Something as simple as making dinner takes a backseat to their care for Luke. Perhaps you could find out what dietary restrictions they have and then take them a meal for supper one evening a week. Can you imagine the blessing they would receive if 5 to 10 families in their church took turns doing that for them each month?

Or, if you are handy around the house, you might offer to stop by and fix the little things that never get taken care of because the care of the one with disabilities is so constant.

And, here’s another thing about disability—those in it will probably not ask for help, for whatever reason. So, take the initiative and say, “I would love to do more than pray for you. Can you tell me one or two ways that I can minister to you? Can I bring supper to you each Thursday? Can I stop by Saturday morning to fix whatever needs to be done?”

Ladies, “God won’t give you more than you can handle” is a false statement. Stop saying it. And stop sharing those memes on Facebook that feature this statement. Instead of saying “God won’t give you more than you can handle,” say, “How can I be a minister of God’s grace to you through this?”

God Give Special Kids to Special People

Ok, so here’s the next saying we’re going to dissect. This is in reference to children with special needs. “God gives special kids to special people.”

Now, I get that this is supposed to be encouraging in some way to those parents of children with special needs. But it’s not true, is it? First, all children are special and are blessings from the Lord.

Behold, children are a heritage from the Lord,
The fruit of the womb is a reward. (Psalm 127:3, NKJV)

In this verse, there’s no distinction between special and nonspecial children, is there? Every single person bears the image of the Creator and is therefore precious and special to Him.

Second, I’ll be the first to tell you that I am not in any way more special or more capable of having a child with disabilities than you are. I am just as much in need of God’s grace and mercy to parent my children as you are. When you say things like this, you set me apart from you. But remember, in disability, there is no “us vs. them” – there is only us – all of us.

There’s a big burden that’s placed on parents of a child with disabilities with this saying—the idea that I need to be some sort of supermom to Kieran. Quite simply, I’m not and I can’t be.

This is my husband’s cousin, Isaiah. He is 33 and has a more severe form of cerebral palsy. Isiah is non-verbal and communicates with some simple signs. He uses a wheelchair to get around when he’s away from the house, but his mother often needs to lift and carry him places. He loves saying hi, giving high-fives, and being around young children. He enjoys eating French fried and watching people work. He loves to help by carrying a person’s things on his wheelchair for them to their car. Regularly, he puts clothes into the dryer and potatoes into the bin.

 His mom, Debby, candidly admits:

“It's no cakewalk! God helps me through times I never could imagine going through. I am very weary of caregiving. However, I am very thankful God has enabled me to physically do this job! I think about the children going through the wilderness. Their shoes never wore out over the decades. I have no back problems and can still lift and carry Isaiah—after 33 years of this.”

In fact, Debby is at the place that she can no longer get Isaiah ready for the Sunday morning service at the church where they are members in time, so she takes him to a later service at another church. In the past, when she wanted to attend a ladies Bible study one morning a week, she couldn’t because she couldn’t find volunteers from her church to stay with Isaiah and couldn’t afford to pay hundreds of dollars to have a professional stay with him. For seven years, she and her husband never sat together during a church service because one of them always needed to stay with Isaiah, even though they had asked the children’s minister for help in finding others to sit with Isaiah. They don’t attend a Sunday school class or a small group because they have no one to help with Isaiah. Only recently have they found a Bible study for older people at a different church that will also allow them to bring him as necessary.

 Debby and Larry are not the only ones who have had difficulties participating in church life.

Dr. Jeff McNair, a professor of disability studies, says:

"Christian people with disabilities feel supported by their personal faith but not their corporate faith." 

In other words, God is a very present reality to them. But the body of Christ – His hands and feet -- us, you and me – are not. Is your church ready to welcome someone with disabilities? Are you?

Let me give you a few ways that you can help those with disabilities and their families come to church and feel welcome in your church. If you haven’t already had someone with disabilities walk through your doors, you will soon.

Look around your church and make sure the main areas are accessible. Ensure there are accessible parking spaces available for those who may need them. And don’t park in the accessible spaces yourself, if you don’t have a disability.

Volunteer to stay with Isaiah (either at church or at their home) in order for Debby to attend a Bible study. Get your older children involved. Isaiah loves being around people and it would be a great opportunity for you to show your children that there is no “us and them” – only us, all of us.

Volunteer to sit with Isaiah during the church service. Arrange with 3 other people (including older teens and young adults!) to take turns one time a month staying with him.

The church that we are currently attending doesn’t have a disability ministry, per se, but our brothers and sisters in Christ have been ready to minister to Kieran. At our VBS a few years ago, since I was leading the missions time, a lady offered to stay with Kieran as his group visited the various stations.

She helped him with his craft, helped him play the games, encouraged him to listen to the Bible account, and kept him from wandering off as they transitioned between places. She wasn’t trained in working with those with special needs, but she was willing and ready to help.

And when the children’s church leader noticed Kieran needed help paying attention on Sunday, she asked how they could help. Because of his attention issues and distractibility and his proneness to wander, Kieran needs someone to come alongside and gently encourage him to stay on track and with the group. Tell your children’s ministry director that you’re willing to do something like that. Or even tactfully talk to the parent directly and let her know you’re willing to help.

If you are in children’s work, provide a variety of accommodations (writing utensils, scissor types, and so on) for children to use in their classrooms. And think about ways that you can possibly incorporate technology into your classes. Many children with certain disabilities respond well to the use of technology more than to interacting one-on-one with people.

I’ve mentioned my own cousin Karen before. This is Karen with her sister Sandy. Her family often didn’t go to church because the church wasn’t easily accessed by wheelchair and no one took the time to welcome Karen and provide for her. It would have been a huge encouragement to her and her family if several people would have taken the time to learn Karen and her special needs. She could hear, but she didn’t like loud noises, so sending her to classes with other children didn’t work well.

And those who didn’t take the time to ask talked loudly around her, which frightened her, causing her to cry. All it would have taken was a simple conversation with her parents (since she couldn’t talk) asking the best ways to communicate with her.

She loved having people talk—in a normal voice—to her about anything and everything. And she loved listening to country music on her iPod. It would have been simple for someone to spend time with her during the service, reading to her, chatting with her about their week, letting her listen to her music, and allowing her parents to soak in God’s Word and to fellowship with their brothers and sisters in Christ.

For those with physical disabilities, be willing to ask them if they would like assistance first before offering—learn what they need or want and ask for specific instructions.

When I was much younger, my mom realized that several deaf individuals at our church weren’t able to understand the preaching and teaching because no one was interpreting for them. So my mom dragged my sister and me to several college-level classes so that she could learn sign language and interpret for these individuals. And, as a side benefit, my sister and I also learned a bit of sign language and could communicate with them, as well.

My aunt’s church in California offers a monthly thematic day for families with a child who has special needs, called the Teddy Bear Brigade. They provide a program for the children and offer the parents and siblings time to interact in a support group.

Additionally, look for ways those with disabilities can share their gifting with the body of Christ in your church.

I have a friend who attended a church in Florida where they gave a man who had difficulty speaking as a result of a stroke the ministry of calling everyone in the church on their birthday and singing happy birthday to them. Not only did this give this man an opportunity to serve, but, as a benefit to him, it helped him improve his speech!

My husband’s sister, Mimi, has Down syndrome. The church she attends with her parents began an effort to get everyone involved in some type of service. They asked if Mimi could come early or stay after certain services to realign hymn books and Bibles in the pews or to fill the tract rack. She loved doing those things. In fact, Mimi loves passing out tracts.

 When we visited with her a while ago, 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.

I am blessed and encouraged by Mimi’s devotion to Jesus. There’s a lot that I can learn from her boldness.

In similar ways, we can learn compassion from those who are disabled. And we can humbly catch a glimpse of how Jesus sees us and our feeble attempts at responding to Him in those who are unable to do much for themselves. 

Instead of saying “God gives special kids to special people,” you might try saying something like, “I’m encouraged by the way I see God’s grace and His working in your life with your son. It encourages me toward Christlikeness when I see how God gives you what you need and uses you to bring glory to Himself.”

“If you just had more faith, God would heal you . . . .”

Ok, deep breath. Now we’re going to dive into a statement made to those with disability and disease that is one of the more controversial ones. So here goes. Let’s see if you can find this one in your Bible: “If you had more faith, God would heal you.”

A resemblance of this is in the Bible, isn’t it? We read in several places that Jesus saw a person’s faith and healed them.

These miracles of healing that Jesus did while He was on earth demonstrated to His followers that He was who claimed to be—the Messiah, the Son of God. In fact, one of the prophecies given before His coming was that He would heal individuals of their disabilities. 

Prophecy: “Then the eyes of the blind shall be opened, And the ears of the deaf shall be unstopped. Then the lame shall leap like a deer, And the tongue of the [mute] sing.” Isaiah 35:5-6

Fulfillment: Jesus answered and said to them, “Go and tell John the things which you hear and see: The blind see and the lame walk; the lepers are cleansed and the deaf hear; the dead are raised up and the poor have the gospel preached to them.” Matthew 11:4-5

While Jesus was on earth, He delighted in reversing the effects of the Curse that He had placed on His creation four thousand years earlier. And, in the beatitudes, He said that those who do this are blessed. Further, one of the names of God is Jehova Raphe – the Lord who heals (Exodus 15:26). Our God and Savior truly is the Great Physician.

And, it’s also true that faith is vital to Christianity. In fact, without faith, it is impossible to please God as the writer of Hebrews teaches us in Hebrews 11:6.

We are saved by grace through faith (Ephesians 2:8-9). His offer of salvation through repentance of sin and faith in Jesus is the ultimate reversal of the Curse. In exchange for eternal separation from His goodness, we are graciously given eternal life with Him.

But here’s an important point. While Jesus healed people during His time on earth, He didn’t heal every single person who had a disease or disability at that time. In fact, in the book of Mark, we read of time when Jesus actually turned away from healing people. He chose not to heal them. Turn with me to Mark 1:35. Prior to this verse, Jesus has been healing those who have come to Him.

And then we come to this passage. 

Now in the morning, having risen a long while before daylight, He went out and departed to a solitary place; and there He prayed. And Simon and those who were with Him searched for Him. When they found Him, they said to Him, “Everyone is looking for You.” But He said to them, “Let us go into the next towns, that I may preach there also, because for this purpose I have come forth.” (Mark 1:35-38)

So, Jesus had healed many people. And even more continued to come to Him, asking for His healing touch. Everyone was looking for him. But Jesus walked away from them and moved on to the next town. He cared about these people, individuals who bore His own image. But there was a greater purpose that He had to fulfill—He wanted to do what He came to do—preach the gospel.

 And there are other accounts, inspired and ordained by God, given in the Bible that show God, in His sovereignty, does not always choose to physically heal.

Paul writes in his letter to those in Galatia:

“You know that because of physical infirmity I preached the gospel to you at the first. And my trial which was in my flesh you did not despise or reject, but you received me as an angel of God, even as Jesus.” (Galatians 4:13-14)

Paul mentions a physical infirmity that wasn’t healed, apparently. In fact, it was because of this infirmity that Paul preached the gospel to the Galatians.

And in his letter to the church at Corinth, Paul says:

Because of the surpassing greatness of the revelations, for this reason, to keep me from exalting myself, there was given me a thorn in the flesh, a messenger of Satan to torment me—to keep me from exalting myself!

Concerning this I implored the Lord three times that it might leave me. And He has said to me, “My grace is sufficient for you, for power is perfected in weakness.” Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me. 

Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ’s sake; for when I am weak, then I am strong. (2 Corinthians 12:7-10)

Further, Paul—who himself had healed many people through the power of God—writes to Timothy:

Erastus remained at Corinth, but Trophimus I left sick at Miletus. (2 Timothy 4:20)

We like to think in terms of “our rights”—we have a right to be healed, a right to a good life, a right to happiness. But, according to the Bible, the only right we really have is the right to be punished for our sins by death. Everything else—health, happiness, salvation from sin—is a gracious gift from God, who gives extravagantly and abundantly according to His sovereign will—for our good and His glory. And we need to willingly and joyfully submit to His will, whatever that may be.

There is a lot more that could be, and has already been said and written on this topic by minds far greater than mine. I don’t mean for this to be an in-depth treatment on this vast subject; instead, I want to give you some things to think about the next time you hear this phrase or think about saying it to someone else. We cannot possibly know what is in a person’s heart—only God knows that. And we cannot possibly think that we can know better than God when healing should take place.

I have had a few people tell me they will pray that, if the Lord wills, God would heal Kieran completely. But my friend Tressa, who deals with a variety of physical ailments, has heard this phrase far more often than I have.

When Tressa was pregnant with her son several years ago, she suffered major complications from the pregnancy that resulted in multiple organ failure. Due to this, she currently has functioning yet damaged organs and a damaged endocrine system that require consistent monitoring and managing with multiple medications. She’s also developed autoimmune diseases and acquired several infections, including Lyme Disease, through blood transfusions.

In short, Tressa’s body is not working the way it should. She has been in and out of hospitals on a yearly basis and is in pain a lot of the time.

Can God heal Tressa? Absolutely. But, we need to remember, God is sovereign. And in His sovereignty, He chooses to heal or not to heal as He deems best—for His glory and for our eternal good.

Joni Tada, who has spent over 40 years as a quadriplegic as a result of a diving accident writes what she would share with her younger self,

I would gently say, “Joni, no matter how much we may wish it were otherwise, the Bible does not teach that He will always heal those who come to Him in faith. He sovereignly reserves the right to heal or not to heal as He sees fit. He sovereignly reserves the right to call His children home to heaven at the moment of His choosing.” (p. 173, A lifetime of Wisdom, Joni Tada)

And if God ordains that somehow, in His infinite wisdom and goodness, it is better for Tressa to remain as she is without complete physical healing this side of heaven, then it is our responsibility not to judge her, like Job’s famous friends did to him, incurring the wrath of God. Instead, we need to truly come alongside her and be a minister of God’s grace to her.

Sadly, Tressa has experienced not only the pain of her illness but the pain of having friends fall away because they don’t understand this. They couldn’t handle her constant pain and disability and the disappointment of God not meeting their expectations through her healing.

Tressa says,

If people could learn to come alongside someone with chronic issues by not only praying but also by living life alongside us despite the disabilities. That is hard to do because the well person has to get outside of themselves and their ideas of what life "should" look like and meet the "sick" where they are at and realize that the disabilities do not define who we are.

If you don’t get anything else that I say today, get this: God calls us to minister grace and truth to everyone, regardless of circumstances. Every single person that we encounter bears the image of God, no matter what they look like or what they can do. Every person is an image-bearer. Let that sink into your soul. Dwell on that for awhile so that you truly see every person as a bearer of the image of God. And the way we treat image-bearers is a reflection on the One whose image they bear (Proverbs 14:31; Proverbs 17:5; James 3:9-10). Don’t run away from your friends with disabilities—move toward them. God is using even disability to conform them to the image of His Son.

Charles Spurgeon said this about his battle with gout:

"I am certain that I never did grow in grace one-half so much anywhere as I have upon the bed of pain."

I’ve been encouraged and blessed to watch Tressa’s response to her illness through her posts on social media. She is continually bringing glory to God, reminding us all that God is good no matter what. I see Jesus in her response to her pain and afflictions. And, isn’t that what our lives are really about? Knowing Christ and making Him known?

Let your friend with disabilities know that you’re in for the long-haul. Remember them in prayer and in all these tangible ways we’ve already discussed. Encourage them with the ministry of presence and with the gift of listening.

Another tangible way that you can practically help those with disabilities is financially. Finances are one of those verboten things that no one likes to talk about, so let me break the ice and be blunt, as I’m known to do.

Friends, disability is expensive. There’s no other way to say it. Hospital stays, therapy appointments, medical equipment, medicines—all of these play a very active role in the lives of those with disabilities. And often, as we all know, insurance doesn’t cover what is needed or only covers a portion of it.

We don’t need to be millionaires in order to help in this way—even small gifts can go a long way toward encouraging and helping.

One way is by setting up a fundraiser, either online or in real life. We recently started one to help another friend with her medical expenses. She is suffering from Cushing’s disease and is progressively going blind. She is another one who, through all her physical sufferings, has been an amazing testimony to God’s grace. 

As an aside here, it seems to me that when we insist on physical healing, we miss the spiritual healing that God is working through the physical problems.

It doesn’t take much time to set up an online fundraiser and, using the power of social media, it can go far. We were able to raise over $3,000 for my friend in just a few short days and more is still coming in. The gifts aren’t large, but think about how much could be brought in if everyone on your own friends list donated just 10 or 15 dollars?

Another fun way that my friend was blessed was through gift certificates to get pedicures. Since she is going blind, she can’t see her feet very well and you can imagine what happens when you’re trying to trim your nails. A friend of hers gifted her spa visits so that she didn’t need to worry about trimming her nails.

You can also connect an individual with disabilities to your church’s benevolence fund. Or, just hand cash or check to your friend on your own. My friend Kevin, who has cerebral palsy, has mentioned on several occasions when he’s been delighted to find a small gift of money in his work mail box.

Tressa has experienced God’s grace through people around in her financial ways many times. She wrote this to me:

One year I had to fly to Atlanta, GA, for an in depth surgery and a friend of ours who worked for an airline gave us round trip tickets to fly there. Also, there was a time when someone bought Zade toys to play with when I was in the hospital just to cheer him up. Of course, many many people have helped us out with taking care of Zade each time I was hospitalized. I can recall twice where someone purchased my medications for me (upon arriving home after being discharged from hospital) along with medical supplies. One time Nate did a side construction job for some friends of ours and they paid him $500 extra just to say thank you and help us financially. One year our friends bought us a Wii and said it was so all 3 of us could have fun together because I was so sick we couldn't get out much to have family fun.

Another lady, the mother of a child with Williams syndrome, saw how much horse therapy helped her child and wanted to continue with the sessions, but they were $250 each month, far beyond what their budget could handle. You could find out how much a particular therapy session costs and donate that amount to your friend. Don’t be the judge of which therapies you think someone should or shouldn’t be involved in (as long as they’re not violating any biblical principles, of course). Trust that, for the most part, the parents or caregivers are trying to do the best they can for their child and that this may be one that would help.

Our family has also been on the receiving end. Several years ago, after I spoke on disability at an event here, a lady and her husband met me afterward and told me that they were part of a foundation that gave grants to those dealing with disability to be used for expenses relating to the disability. I hadn’t asked for any financial help during the presentation and hadn’t even mentioned finances, but she said they wanted to send us a check to help with Kieran’s expenses. And, a few weeks later, a check arrived. We were blown away with their generosity and were able to have Kieran in a therapy for several years that those with Williams syndrome enjoy and benefit greatly from—music therapy. That wouldn’t have been possible without the financial blessing from this couple.

These are just a few ways that you can come alongside those with disabilities and be the hands of feet of Jesus to them. Don’t discourage someone with a statement like, “If you had more faith, God would heal you.” Instead, let them know you’re a friend through health and sickness. You can bring them hope in the middle of difficulty and tribulations. 

Our Future Hope

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.

“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)

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)

This is the ultimate hope that we, as Christians, have to offer those with disabilities. That those who have received the gift of eternal life will one day have bodies that no longer bear the marks of the curse.

When I think of my cousin Karen, who went to be with Jesus a few years ago, I smile as I picture her running and shouting and singing and playing and swinging and hugging—all things she couldn’t do here in this cursed world. Will you offer this hope to those God brings to your life? Will you help them to truthfully see and experience God’s goodness through you?

Let me encourage with you this final thought: as you reach out to serve those with disabilities or their families, please can know that you’re not alone. God is rich in grace and mercy and delights to give it to His people. You can do this through His grace and by the power of the Holy Spirit who indwells each of His children. You can truly experience God’s grace as you serve our brothers and sisters. 

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).