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.)

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 . . .

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.