On being "different"

Mike was a guy in the singles class I attended at a church many years ago before my husband entered the picture. He was the unofficial class greeter -- the first to shake your hand when you came in and the first to remember the name of anyone new. He worked at a greeter at a local Walmart. I was kind to Mike, but I found it difficult to really relate to him beyond the compulsory, "Hey, Mike." I expected Mike to be more like me, but since he wasn't, since he was different, I didn't know how to get to know him better.

When I first began working for one of my previous bosses, I found it difficult to relate to him. He was different from me and it felt like we were continually butting heads, for some unknown reason. And then one day, for a reason I can't remember, we sat down together and he told me his life story--about his past, where he'd come from, what his life had been like. And after that, after getting to know him, we clicked and I enjoyed working for him and with him from that time on.

I was reminded about Mike and my previous boss a few weeks ago. We took Buddy for his yearly visit to the Williams syndrome specialist last week, and I was filling out all the evaluation forms they sent before we went. Several of the questions were about his interactions with peers, so I asked his preschool teacher to share her insight. One of those questions was, "Do his peers ever think his behavior is odd or weird?" She (kindly, truthfully, and without malice) answered with the "Sometimes this is true" box.

That stung a bit.

Sure, I can look around and see that Buddy is different from other children. Most kids his age don't keep their hands over their ears because the noise level in everyday situations is too intense for them (a condition called hyperacusis). Most four-year-olds don't burst into tears at the sight of something that makes a noise they don't like (the blender, the vacuum cleaner). Most kids don't have difficulty sitting still for short periods of time or paying attention to the task at hand. Most of his peers don't have trouble tracing a line, drawing a circle, cutting along a straight line, coloring a picture, or building something out of blocks. Most kids don't have difficulty initiating and sustaining a conversation or playing games with other children. Most children don't go around giving hugs to everyone they see.

But he is Buddy. And he is different.

And here's the thing about being different: It's okay.

It's okay because God, Buddy's Creator and the Creator of each one of us, likes variety. And He fearfully and wonderfully created Buddy in His image just the way He wanted him to be.

I don't find Buddy odd or weird. I enjoy being with him, talking with him, and playing with him . . . on his terms (which often include weedwackers). I know him well (I should since I'm his mother, right?), and I know what he's like as an individual, not measured against everyone else.

I know that he's funny, likes reading books, enjoys being around people, and loves playing his harmonica. And while we're working with him to minimize some of the "differences" in areas such as conversation and fine motor skills, we also love him just the way he is.

Whether we know it or not, we expect people to be like we are, and when we find out they're not, we may label them as different, or weird, or odd. I'm fairly sure, looking back now, that Mike had Williams syndrome. His overfriendliness, good memory of faces and names, distinctive facial features, and slow shuffling walk fit the profile of a syndrome that has become part of our lives. But does it matter whether someone has a "diagnosis" or a storied past that helps explain current behavior? It shouldn't--we should be kind to everyone, receiving each as an individual created in God's image for His glory. But sometimes understanding what makes a person different from me can help me embrace those differences a bit more easily.

If you expect Buddy to act like other typically developing four-year-olds, you may find his behavior odd or different. But if you expect him to act like Buddy and take the time to get to know him as Buddy and allow him to be Buddy, I suspect you'll find that he'll bring you a great amount of joy, as he does to us.

(I feel the need to add this disclaimer, which seems silly because this blog is just for friends and family, but I do want to be clear that I'm not talking about tolerating moral differences or tossing aside the clearly delineated moral commands given in the absolute standard of God's Word favor of accepting any type of behavior. We are teaching Kieran to be kind, to share his toys, to obey those in authority, and to follow God's Word. Nor am I advocating accepting the "all roads lead to heaven" approach (Jesus clearly said that He is the only way to heaven). So, there. Disclaimer ended.)

Lora's likes

Some of my friend Lora's favorite things:

I like movies my favorite moves are born free all the James bond moves
I like going out to eat at the olive garden love Mexican food

I like to paint in oils I like al kinds

I like to watch tv I like Leno

I like all the shows on medical like untold story's of the er i like nature and wrestling and moves to on tv

I love meet people from al over the world love to learn what they do I love the net

"My life has been enriched"

I received this sweet note about my friend Lora (who has Williams syndrome) from a friend of hers. She gave me permission to post it here.

I met Lora at Dietert Senior Center when I was volunteering to do the front desk. She and Mark were taking some painting lessons. We had lunch with both of them and later with just Lora. I was a bit taken aback when she said to me "you can ask me anything you want". At first I didn't understand but realized she was a very unique person. As I got to know her, I found Lora to be the most open, honest and cheerful person I have ever met.

My husband and I invited Mark and Lora to have dinner at our house. She expressed an interest and knowledge of animals so my husband pulled out his photo albums from his time in South Africa. Lora was delighted and knew so many of the animals. She said she learned from watching National Geographic programs.

I feel my life has been enriched by meeting and getting to know Lora and Mark. I think Mark must be a wonderful person to have recognized what a very special person Lora is. I have said to many of my friends that I wish I could be more like Lora - so trusting, friendly and innocent - rare traits in today's world.

Thank you for allowing me to comment on my friend, Lora.

 Ann

Lora's jobs

Tonight, I had a nice time chatting with my friend Lora about jobs she's had in the past.

can you tell me about the jobs you've had over the years?

ive had so many

ive worked in a nurseing home ive worked for a camp ive worked for 3 day cares

ive worked for mcdonalds ive worked for church chiken

i worked for the county

do you have a favorite place you've worked?

churchs chiken thats where i meet mark

im trying to think

if i could have any job it would be working in a zoo working with the big cats

i love cats

i think most of us with ws love animals

that sounds like it would be a fun job!

i worked for a vet that was fun

i worked for the pound

i cant think of the other jobs ive had

what kinds of things did you do at the vet?

i cleaned cages would help being the animals out

chang animals a round

fridays where fun there i got to go in and wach them do sugerys

working for the pound was hard

why?

had to put a lot of animals down


oh, that's so sad.

yes

obe time we had to put a dear down that was alfull she was going to have a baby she got hit and ran in to a fence got stuck

i loved working for the day cares

all thos kids runing up to me huging me

what kinds of things did you do there?

would do runing for the teacher like runing off papper they neeed i helped to put kids down for there naps i worked in the kichen

cooked

put kids in time out lol

how old were you when you worked there?

was in my lets 30s

i al so worked for a work shop for handicampped aulds

anything you enjoyed doing there, in particular?

when we would stuff envalops

i like to do colateing puting letters together

stuff like that

we did a lot of diffent things there

what did you do at McD's and Church's Chicken?

i was their gretter i clean tabels i got drinks for them

Thanks for sharing, Lora!

Interview with Lora

Lora is a friend I met via Facebook. She's a 48-year-old woman with Williams syndrome who has been married for 20 years. She's been an inspiration and encouragement to me and I wanted to share her story with you. With her permission, I'm sharing a chat session we had the other night. I'm hoping to have many more with her. If you have a question you'd like Lora to answer, leave a comment and we'll post her answer!

How old were you when you got your diagnosis of WS?

I was 6 years old.

When you talk to parents of children with WS, what do you like to tell them?

That it's so important not to hold them back

In what ways?

In all ways. A person with ws should be looked at as a prison not as some one who can't do any thing.

I want propel to see what we are made of don't tell you child you can't do this tell them thy can.

ive had a very ruff life but at the same time ive learned a lot to a bout who i am what i am

So, how do you see yourself? How do you describe yourself?

i see my self as a strong woman with ws

can i ask you someing

Sure.

is it hard for you

Hard for me to be the parent of a child with WS?

yes

i dont get to talk with prants with child with ws i wish i could talk more to them

Hmmm. The hard parts for me are seeing the struggles that my son has and wishing things would be easier for him, hoping that he doesn't get teased for being different as he grows up and goes through school, and, in the beginning before we got his diagnosis, wondering why he was having so many physical difficulties and not knowing the answers. It can be difficult to keep up with all the therapy and doctor appointments and intentionally spend time with him teaching him how to do things that come naturally to other children, but he has also brought so much into our lives that we wouldn't have if we weren't on this journey. And, most importantly, God has been good in giving us the grace and mercy we need as we parent him-- and in that respect, it's not "hard" being his mother -- it's a joy.

amen. this may sound funny but i think if you put any kind of child with a hadicampped im a home it will chang lifes for ever

that is for sure -- it definitely starts you a journey that you didn't expect to be on.

true

So, which of the physical aspects of WS have you had to deal with? Any heart problems?

yes. when i was little. no heart surgeries. i been blessed with that.

Any other physical problems?

not that i know of.
mom says i didnt start walking tell i was a little older.

What kinds of things have you gotten involved with as an adult?

i been to 3 conffcers
i vontteer for our hospice

What do you do for hospice?

i help with a lot of diffent things we have a group that gos to nurseing homes and we read to them i back cookies and do other things

i al so vontter for our art museum
i greet peopel as they come in love it

Can you tell me about how you met and married your husband Mark?

 i was a gretter at a fast food restaurant he was a ranch hand he would come in and sit in the middel of the restaurant

he was so shy it was sweet

we dint talk to eachother much

you know when the right man come in to your life at the right tim

i was going to a singles group just to fime a friend

he walked in to one i was at i al most fell out of my chair
i was working for charch fried chiken
he looked at me and sied your the chiken lady
lol
we started to talk a bout diffent things
then my friend who drove me there was geting ready to leave i thought
if i dont talk more to this guy i want get to again
so i told her ill fine some one to take me home
guess who i asked to take me home lol
so he took me home
telling my mom that i was in love was hared for me
i dint know my own feelings for this guy was to be honst i was scared to deith
our frist deat was on one of the ranchs he worked on

im a city girl here i am in the boonies

with goats and other things i never saw be for

it took me a few moths to trust him

so after a few moth deating i knoew i was in love

i asked him to marry me

Wow!

then we heared my aunt was very sick had to go see her

you talk a bout god puting me throw a test

my aunt had cancer i dint know a bout it

my aunt is stll alive healed of cancer

here i am now 48 been married 20 years

To be continued . . .

Bribe attempts and blubbery

You know how before you get married/have kids, you say those "I'll never (fill in the blank)" phrases? And then, once you're married/have kids, invariably you realize that the "I'll never" statement was a bit brash and foolish? Yes, well, one of my "I'll never" statements was, "I want my children to eat healthful food without needing to be bribed with sweets or cajoled constantly."

And then Buddy was born.

From the time he was yanked out of my abdomen, we've struggled to get Buddy to eat well and consistently. The first few months of his life, he was labeled "failure to thrive," and we spent quite a bit of time with a GI nurse at our local children's hospital trying to figure out what was going on with him.

(This was before his diagnosis of Williams syndrome, which helped to explain the low muscle tone that caused eating difficulties, the reflux, the lack of weight gain, as well as the general difficulty in getting him to eat that is common among those with WS in the early years.)

Although he's now able to feed himself, for the most part, it's still an almost daily struggle to get him to put food in his mouth--even food that he likes . . . or has liked in the past. In general, I've tried to make sure that every calorie counts for him and have focused on giving him good foods that are packed with as much nutrition as possible. But, he has a few texture issues with some foods and still has low muscle tone in his mouth and lips, making it difficult for him to bite and chew certain things. And then there's his general disinterest in food.

However, somewhere along the way, Buddy discovered cheese puffs. And lately I've been realizing that if Buddy were (for some random reason) to be found along the side of the road with a sign, that sign would read, "Will eat for cheese puffs."

And I've decided to banish my "I'll never" statement and use cheese puffs to get him to eat. And it works (mostly). "Buddy, if you want some more cheese puffs, you need to eat your fruit."

Gobble, gobble, gobble.

"I want more cheese puffs, please."

I can't say that's it been a magic cure-all, but cheese puffs have defintely helped us through a few non-eating times, and I'm grateful for them and all their non-organicness. I figure the few bites of fruit/meat/healtful foods that he eats in order to get the puffs cancels out any potential bad effects he might get from the processed puff product itself (even though the packaging assures me they're "all natural").

So, tell me, what have your "I'll never" statements been?

Horse fail

One of the suggested helps for those with special needs is hippotherapy -- working with a therapist and using horses for therapy. It's something I've thought about for Buddy since he's been on a few smaller horses in the past and seemed to enjoy it.

I have the video to prove it.

Exhibit A. Riding a pony at a dairy farm we visited while in Florida over Christmas. No worries, right?

So I was understandably eager to find a nearby place that provides hippotherapy to get him started (he's still showing evidence of low muscle tone and lack of coordination in his movements--things which hippotherapy is supposed to address). I checked around and found a place not five minutes away (and believe me, there's not much that's just five minutes away from us).

A few Fridays ago, I took the boys to meet with the owner. Buddy was looking forward to "seeing some horses," but when we got there, we didn't get the chance to actually get close to the horses since it was a bit rainy. So, we made plans to go back on Monday and start. I talked about it with him over the weekend, explaining that we'd go see the horses and maybe ride one of them, trying to get him ready for what we'd be doing.

But when Monday rolled around and we rolled into the parking lot at the stables, something snapped in his brain and he decided horses weren't for him. He started crying (and I mean crying) when we got there and just wouldn't stop. He wasn't interested at all in seeing the horses or getting near them.

I really don't know what happened -- too much talking ahead of time? Anxiety is common among those with WS, so I'm wondering if somehow I made things worse by talking about it with him? I don't know. But it seems, for now, that hippotherapy will not be on the agenda for the summer.

So we'll move on to something else -- music therapy, I guess . . . .

Furthering the Obsession

The other day, we were playing with Lego-style building blocks, and I decided to further Buddy's interest in weedwackers (which he had talked about all day) by making something akin to a weedwacker for him to play with (until it fell apart, repeatedly).



He enjoyed it. A lot. (Note that I've never claimed to be artistic. I was actually quite proud of myself that it turned out looking like something in the neighborhood of a weedwacker. (And yes, our other son is playing with an empty box. Digging items out of the recycling bag is his idea of a good time.))

But then, my paltry attempt at a weed-wacking device was surpassed by something far, far better(there's probably a spiritual analogy in there somewhere, but I'm not going for it at the moment).

Buddy's aunt and uncle had ordered a play John Deere weedwacker for him (after reading the previous post on weedwackers) and it arrived later that afternoon.

He was beyond thrilled. And he couldn't wait to show his daddy when he got home from work.



He's been weedwacking my plants ever since.

(The play weedwacker actually makes a noise if you pull the string and push the button, but he doesn't like the noise it makes, so he continues to make his own weedwacker sounds as he mows down the houseplants.)

Buddy sends his most profuse thanks to his aunt and uncle!

That Child

So, you know how at any event showcasing young children, there's always that one child who can't be corralled, who isn't paying attention, who isn't participating nicely like the rest of the children?

Yes, well, that one is my child.

The other night, we went to a "graduation" party for Buddy's preschool class. It was mainly just the kids singing a few songs, saying the months and seasons of the year, going through the alphabet--you know, pre-K stuff. Most of which Buddy knows.

But he wasn't interested in participating. At all. You'll notice he's the only one not wearing a hat and not standing in line with the other kids.

He did, however, receive the "Best Hugger" award, which he then proceeded to demonstrate by giving out some more of his hugs. Can you count how many time he hugs someone in this two-minute clip (two of the people he didn't even know)? And can you see how uninterested he is in the whole thing?

 

(Have I mentioned that over-friendliness is byproduct of Williams syndrome? I'm really looking forward to the session on "Distinguishing Between Friends and Strangers" at the WS national conference we're attending in July . . . .)

At any rate, I really appreciate the patience and the genuine interest and caring his teachers have shown toward him this year. Mrs. Karla's twenty years of experience in working with kids and those with special needs have been invaluable in helping him--he definitely wouldn't be as far along as he is without the help and support he received through her. I'm so thankful the Lord let us to her little preschool, and I'm looking forward to having her continue to teach Buddy over the next few years.

Weedwackers

One of the characteristics of those with Williams syndrome is a tendency to perseverate on a topic. So I'm not sure if Buddy's current obsession with weedwackers is a byproduct of WS or if it's just him being a little boy with an avid interest in a certain item.
Whichever it is, weedwackers have become the thing he thinks about morning, noon, and night. For example, can you spot the weedwacker in the picture below?

He did. Immediately. As we were reading A is for Adam the other day, we came to this picture, and he said, "Look, a weedwacker." And we couldn't read any further because he needed to analyze the "weedwacker" Adam was holding. I didn't really have the heart to explain to him that what Adam used was not really the equivalent of the Husqvarna his daddy uses.

And, can you see the "weedwacker" in this picture?

He did. Actually, he vacillates between calling it a weedwacker and a vacuum. But weedwacker usually wins.

Weedwackers have also started showing up in the songs we sing. The other day, as Cubby and I were singing Old Macdonald had a ___, Buddy chimed in with weedwacker . . . with a zzzzzz here [he does a pretty good imitation of a weedwacker sound] and a zzzzzzz there. 

And weedwackers are also on the bus -- The weedwackers on the bus go zzzz, zzz, zzz.

I believe they were also in the Mother's Day song Husband tried to get him to sing on Sunday, Happy weedwacker to you, happy weedwacker to you, happy weedwacker, dear weedwacker, happy weedwacker to you.

As we were playing with Mat Man from Handwriting Without Tears, instead of making Mat Man, he wanted to make a weedwacker with the pieces.

And today, when I was listing the things I needed to get from the store, "Milk . . . bread . . .", he added, "Weedwacker."


The irony in all of this is that when he sees an actual weedwacker being used, he covers his ears and freaks out a bit. I guess it's more of a love-hate relationship.

So, what say you -- perseveration or just a boy being a boy?

I don't understand

A few weeks ago, my husband and I watched this video by a man whose son was born with multiple disabilities, including blindness. One of the points he made has really stuck with me. The Apostle Paul, in his letter to the Christians living in Corinth, writes about the unity we have in the body of Christ. While discussing how we all play different roles in the church, Paul says, "those parts of the body that seem to be weaker are indispensable" (1 Corinthians 12:22).

Think about that in relation to those with disabilities: those we consider "weak" are indispensable in the body of Christ. Paul, an amazingly intelligent and gifted man, considered those who are "weak" to be indispensable. Not just "a good part of the body that we're happy to have along," but indispensable. Meaning the Body of Christ can't function without them.

That's certainly a different mindset than what we hear from our culture today--a culture that teaches the disabled are burdens to be borne and frequently disposes of them while still in utero.

One of the ways those who are disabled contribute to the body of Christ is through what we can learn from them--compassion, kindness, patience. I've already seen this with Buddy. My friend Georgia tells me that she's talked to her daughter about Buddy and encouraged her to be compassionate toward him. This has carried over into the way her daughter treats other children in her life--she's reached out to a girl in her class with mental disabilities who needs a friend. Would we know what compassion was if we didn't have anyone on whom to show it?

I recently watched this video of Larissa and Ian. If you haven't already, take a few minutes and check it out.



Amazing video, isn't it? I appreciate their message of God's sovereignty and goodness in the face of such suffering and the way God has been glorified through their lives, but the video left me wondering why. Why would this girl give up so much to marry someone who could give, in return, so little humanly speaking? They weren't married -- or even engaged -- when Ian was in the car accident that caused his TBI, so why would she willingly choose to stay with him -- to marry him -- to pledge to be his wife for the rest of her life -- knowing what that would entail--when she didn't have to? He can't offer her what most men bring to the table -- the ability to provide for her, to be a strong protector . . . . And yet, she married him. . . . Why, indeed . . . .

And, I'm coming to realize, that this is where those with disabilities may offer us, as Christians, an even greater indispensable service. Those who are unable to do for themselves, who need help with the very basics of life, who can't contribute much if anything to a two-way conversation, offer us a glimpse of what we are like in the eyes of the God of the universe.

As I've been meditating on Ian and Larissa's story, feeling unsettled and wondering why, trying to make sense of their lives together, I've also been continually brought back to the realization this is the way Jesus has loved us. Me. I bring nothing to the salvation table -- the marriage beween Jesus and His church. Nothing. I am helpless, unable to produce any type of work in the sight of the Holy Creator that would make me acceptable to Him or worthy of His love. I can't provide anything that helps me along the narrow way to salvation. I have absolutely nothing to contribute to my salvation from sin.

 And yet . . .

When the kindness and the love of God our Savior toward man appeared,  not by works of righteousness which we have done, but according to His mercy He saved us, through the washing of regeneration and renewing of the Holy Spirit, whom He poured out on us abundantly through Jesus Christ our Savior, that having been justified by His grace we should become heirs according to the hope of eternal life. (Titus 3:4-7)

Larissa remembers the way Ian used to be -- before his accident -- and she longs to see him return to his former self and wants to be there along the way to help him. Because she loves him.

I suppose, in a way, this is a reflection of the way God is toward us. He remembers the way He originally created mankind -- innocent image-bearers full of His glory, full of life, full of love and peace. And He longs to see us return to that original state of perfect harmony with Him. And He has provided the way for us to do that through His Son. What love. What amazing, incomprehensible love. I don't understand it.

Thank God for His goodness in giving the indispensable weaker members to teach us of His great love toward us.

Wheels for Williams

This week (May 9) is Williams syndrome awareness week and there have been lots of events around the country this past weekend and today to raise awareness for WS and funds for the Williams Syndrome Association to help with research, educational opportunities, and scholarships for camps and conferences (among other things).
We went to an event today that was a bit different from the other events, which were mainly walks. We went to the first one two years ago, skipped last year (due to Cubby's arrival), and made it again this year. This event was a cruise-in (called "Wheels for Williams") with lots of older cars and things with wheels.

There was even a little hot-rod that Buddy tried out.

And Buddy and Daddy checked out the cars and the fire engines.

A fun time was had by all. We're looking forward to next year!

Time and Effort

When my sister and I were still in school, my mom went back to school to get her teaching degree accredited. For one of her assignments, she had to write and illustrate a children's story--she chose to base hers on my sister and me and called it, As Different as Night and Day. It was about a momma bear who loved each of her two cubs, even though they were each very unique and different. Sounds like a sweet story, doesn't it? I still think she should dig it up and get it published.
I've been reminded of that story with my own boys and the differences I've seen in them. I realize that no two typically developing siblings are alike but  there are more pronounced differences between a typically developing child and one with special needs. And the differences I've noticed between Buddy and Cubby can be summed with two words: time and effort. The time it takes to learn something and the amount of effort it takes to master a skill.

Those things that Cubby has learned to do, almost overnight, took Buddy much longer to learn:

Cubby was walking by nine months -- Buddy walked at 15 months
Cubby started "talking" when he was about 10 months -- Buddy said his first word at 27 months
Cubby started climbing stairs almost as soon as he started walking -- Buddy is still working on climbing up stairs without help
Cubby can throw a ball at at 11 months -- Buddy didn't really start throwing things until late into his twos
Cubby started using his pointer finger at about 8 months -- Buddy didn't learn to use his index finger to point until he was 13 months

 

Cubby is able to pick up new skills much more quickly than Buddy has. And he does it with much less effort. Cubby is, almost, self-taught in a lot of areas -- not because I'm not interested in helping him, but more because he decides he wants to learn something and doesn't wait for me to teach him. I came out into the kitchen one day and saw him standing on the top step of the small step stool we have for Buddy to climb on to watch us cook. He'd climbed those steps without my ever having shown him how.

When Buddy learned to climb, it was a much slower process of showing him, repeatedly, how to place his feet and where to put his hands. It was the same with walking. We continually stood him up on his feet, holding his hands, and encouraged him to walk between us. It was a months-long process that we worked on with his OT and in our time with him. We put a lot of effort into teaching him to walk and he put a lot of effort into learning the process himself.

When Cubby decided he wanted something, he pointed at it. He didn't have any trouble isolating his index finger. He just did it. With Buddy, we continually showed him how to close his hand and point with his finger. That, too, was a months-long process. He finally learned how to do it when he got a toy that played music by pushing a small button -- small enough that only one finger could work it. He wanted to hear the music badly enough that he eventually learned to push the button on his own, after we'd shown him over and over how to do it.

Cubby picks up two things -- one in each hand -- and bangs them together. We spent quite awhile showing Buddy how to clap two items together. How to transfer one item from one hand to another. How to stack blocks. Basic things that you wouldn't think would require much effort to do.

It was the same with talking. Cubby started babbling when typically developing babies do--without our help. He repeats most of the sounds we say to him without effort. When we were outside yesterday, he pointed to the neighbor's basketball, said "ba," and walked over to it, wanting to play with it.

Buddy never really babbled and coaxing any type of sound out of him was like pulling a cedar tree through the eye of a needle. With his speech therapist, each week, we'd talk about the sounds he'd made -- He said an s sound this week! I heard an F last Tuesday! He made an X sound yesterday! We checked off the letters in the alphabet one by one, except that he also wasn't putting them together into words. We put a lot of effort into teaching Buddy how to talk -- and, in fact, we're still doing it. He has speech therapy once a week throughout the school year, and we're still working with him on forming sentences, articulating what he wants and needs, and talking about life in general.

Having Cubby around has highlighted for me how much effort Buddy has needed -- and will continue to need throughout his life -- to learn and master new things. It has helped me see that I really do need to be much more purposeful in teaching Buddy things -- I can't expect him to just "get it" like Cubby does. Although, and here's the important point, I can (and should) expect him to "get it" eventually -- with much time and effort -- as he's already demonstrated by all the things he's already accomplished. (And this serves as an encouragement to me as we're in the middle of working with him on learning to write and draw.)

And, here's the other important point, even though there are vast differences between the amount of time and effort each takes to learn, we love both Buddy and Cubby very much and are so very glad the Lord has given both of them to us.

Not just a statistic

The God of the Bible is a God of order. He created the universe in an orderly fashion and endowed it with laws to follow (laws of life, laws of chemistry, laws of physics, laws of mathematics . . .) so that it all works together for His glory and our good. As His image-bearers, we reflect Him in our attempts to order and classify things. In the math problems we solve. In the probabilities and statistics that we put together.

One of the questions people often ask after hearing about Buddy's diagnosis of Williams syndrome is, "What are the chances that your next baby will be born with WS?"

The standard answer is, "Because WS occurs from a spontaneous mutation on one of the gametes (i.e., neither my husband nor I are "carriers" of the disorder), we have the same chance of having another baby with WS as we did with Buddy -- about 1 in 10,000."

We like to toss numbers like this around -- one in ten thousand babies are born with Williams syndrome, one in one hundred babies born to older women will be born with Down Syndrome. Or, to put it another way, Buddy is one of about 30,000 people in America living with WS today.

And yet, it can become easy to forget about the One who created so that 2+2 always equals 4 when we're in the middle of figuring out the answer to questions like these.

I was reminded of this when I read this testimony of a pastor who found out his son would be born with spina bifida. (If you haven't already, take the time to read his testimony or watch the video--you will be blessed. And you will need a tissue.) In his letter to his unborn son, Pastor Josh says, "You are not a statistic."

The reality is that each child is created by God just the way He wants him or her to be. As the Lord reminded Moses, “Who has made man’s mouth? Or who makes him mute or deaf, or seeing or blind? Is it not I, the LORD?" (Exodus 4:11)

And when Jesus answered His disciples' question about the reason a man was born blind, He didn't say, “It was neither that this man sinned, nor his parents; instead, he's just that one in a thousand [or whatever the "statistics" are] who are born blind." Instead, Jesus said the reason was "so that the works of God might be displayed in him." (John 9)

You are not a statistic. Buddy is not a statistic. Cubby is not a statistic of "healthy" children. My husband's youngest sister who was born with Down syndrome is not the one in one hundred statistic. They are each the result of the handiwork of God, who created them to bring glory to Himself and for our good. To display His good works.

It seems to me that there's a danger in relegating children with disabilities to being the result of a "statistic" in that we then go on to classify their lives according to statistics -- there's a high probability that he will have signficant learning disabilities, that life will be difficult for her, that he will live in pain for his whole life. And we no longer see each baby born as an invidual created by God with the potential to be full of His giftings.

And, I would think, the even greater danger with the "statistic mentality" is that it then becomes easier to take the lives of these "statistics" while they are still in the safest place possible for them -- their mother's womb. And we end up with even sadder statistics like this one: more than 90% of children with Down syndrome are killed before they are born. Because their parent didn't want a statistic.

So how should I answer when people ask the question above? Maybe something more along the lines of this . . . "Buddy is not a statistic. He is a blessing to us from God who created him just the way He wanted him to be. If God chose to give us another child with Williams syndrome, we would receive him or her with thanksgiving, just as we would a healthy child."

Made in His Image, part 11

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 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.

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 iswith men, and He will dwell with them, and they shall be His people. God Himself will be with them and betheir 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 Buddy. 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)

My husband’s youngest sister, Mimi, has Down syndrome and lives with his parents. When we recently visited with them, we went out to eat. 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 Buddy 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 is Randy Alcorn’s book If God Is Good. This is an amazingly comprehensive, yet easy to read book about God’s goodness in suffering, evil, disability.

And the second book is one that I wrote, Why Is Keiko Sick? It’s a book for children that addresses death and disease. I wrote it before Buddy was born so I don’t necessarily touch on the topic of disability, but it is relevant to what we’ve talked about today.

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).

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Made in His Image, part 10

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 difficult to watch your child suffer. And that the path through life with disabilities is difficult and hard.

But there is hope.

The same God who creates the blind and the deaf and those with genetic disorders also 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 Buddy’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. But 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 Buddy’s life, as well.

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

Photo from Wrestling with an Angel

In response to people saying “God won’t give you more than you can bear,” Greg, a father of a severely disabled child says:

“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.” (Wrestling with an Angel, p. 14)

And God promises comfort to us when we need it.

Blessed bethe 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)

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Made in His Image, part 9

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 pegnancies,” (ttp://abcnews.go.com/Health/w_ParentingResource/down-syndrome-births-drop-us-women-abort/story?id=8960803)

Nine out of ten babies 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?

It doesn’t take much to extend the ability to take the lives of those with disabilities outside the womb. In fact, two bioethicists recently 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, of course, why stop there? Listen to British journalist Virginia Ironside discuss how she would handle a suffering child—not a pre-born baby, not a post-born baby, but a child.

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.

 
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Made in His Image, part 8

The Naturalistic Alternative

I hope up to this point I hope I’ve encouraged you to embrace 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. We need to be careful about bringing Him down to our level and defining what is “good” based on how we feel or see the world.

“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 cursed, fallen world that we’ve brought upon ourselves.

Randy Alcorn points out in his book, If God Is Good, that our definition of goodness is nothing compared to God’s.

“We argue against God’s goodness in allowing suffering, not because our goodness exceeds God’s, but because it falls so far short of it.” (p 168)

Our youngest son is eleven months old. For whatever reason, he enjoys playing in the trash. He’ll reach his little fingers up and over the lid of the trash can and grab whatever he can. Or, he’ll drop something, on purpose in there. To him, the trash can is “good.” So he’s understandably upset when I tell him no, he may not play in the trash and take 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 does our definition of what is “good” look like trash in the eyes of the Almighty Sovereign Ruler of the Universe whose very essence is good?

And yet, 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. So who is to say that the way one set of chemicals combined is any better (or worse) than the way another set of chemicals combined? They have no ultimate standard by which to say that one combination is “good” while another combination is “bad." Therefore, they are unable to consistently 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.” (Provine, W.B., Origins Research 16(1), p.9, 1994.)

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 [and by "science" he means "molecules-to-man evolution" not operational 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.” (Interview with Steven Weinberg (PBS). http://www.counterbalance.net/transcript/wein-frame.html)

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.

Eugenics

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.

Dr. Purdom gives a presentation and has written a chapter for the New Answers Book 3 on this topic so I won’t go into too much detail but I do want to offer a few thoughts.

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?

 
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Made in His Image, part 7

The Glory of God in Disability and Suffering

I want to spend a few moments talking about what the glory of God looks like in disability and suffering. 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 does this look like in my situation?

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

If you’ve ever called to order something from Answers in Genesis, you may have had the privilege of speaking with Kevin, one of our customer service representatives. Kevin is an amazingly cheerful and friendly individual. He knows the AiG products inside and out and will quickly help you choose the products you need. But 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 Vuijicic. 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. To apply this to my particular situation, when I can encourage a newly diagnosed parent of a child with Williams syndrome in the Lord, I bring glory to God. When I can share with others how I view God in light of Buddy and Williams syndrome, and point them to the Creator and Savior, I bring glory to God.

The great preacher James Montgomery Boice was diagnosed with liver cancer in 2000. When he announced it to his congregation, this is what he said.

“Should you pray for a miracle? Well, you’re free to do that, of course. My general impression is that the God who is able to do miracles—and He certainly can—is also able to keep you from getting the problem in the first place. So although miracles do happen, they’re rare by definition. . . .

"Above all, I would say pray for the glory of God. If you think of God glorifying Himself in history and you say, where in all of history has God most glorified Himself? He did it at the cross of Jesus Christ, and it wasn’t by delivering Jesus from the cross, though He could have. . . . .

“God is in charge. When things like this come into our lives, they are not accidental. It’s not as if God somehow forgot what was going on, and something bad slipped by. . . . God is not only the one who is in charge; God is also good. Everything He does is good. . . . .

"If God does something in your life, would you change it? If you’d change it, you’d make it worse. It wouldn’t be as good.” Pastor James Montgomery Boice. http://www.freerepublic.com/focus/f-religion/1452178/posts, Sermon preached on May 7, 2000 at Tenth Presbyterian Church, Philadelphia, PA. Accessed March 29, 2012.

Eight weeks after he preached this sermon, he went to be with Jesus. How was God glorified through Dr. Boice’s cancer? He was glorified when Dr. Boice reminded people that God is always good and always sovereign. When he reminded people of who God is and encouraged them by his trust in the sovereign Creator. When, ten years later, we can still learn from and be blessed by his message on God’s sovereignty and goodness.

So let me ask you this: what does the glory of God look like in your life? In your disability? In your sufferings?

 
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