Posted by: Kathryn Craig | April 18, 2009

Beach Glass

beachglassI love walking the beach for the calm it invites in my life, for the perspective it gives me and for the beauty and treasure found in simple detail. And I especially preserve delight in uncovering the quiet splendor in a shard of beach glass.

What is it about a forsaken fragment of what it was meant to be to be… cast off, useless, inconvenient and neglected, that time and abrasion transform it into a highly prized gem? It’s the scuffs and scrapes that develop this jewel, its imperfections that provide its individuality and beauty.

As I walked the abandoned beach last week, amidst the pebbles and smooth rocks I spied my first slice of beach glass of the season. Treasure! As I reached down to claim my jewel it suddenly suggested to me… Connor is my beach glass.

My dream and expectations for what he might have been has changed. But who am I to determine in my dreams what he should have been, what he could have been? I live with who he is. Beauty on a beach of pebbles. Blending in, but standing out. Glowing in his uniquely frosted patina… sometimes tossed, sometimes tumbled by life, but strengthened by the process.

It’s his individuality that shines in the sun.
I’m grateful for the treasure that resides in Connor.

…………………………………………………………………………

The Lord your God has chosen you out of all the peoples on the face of the earth, his treasured possession. The Lord did not set his affection on you and choose you because you were more numerous than other peoples, for you were the fewest of all peoples.  But it was because the Lord loved you. Deuteronomy 7.6-8

Posted by: Kathryn Craig | April 7, 2009

Funny Bones

The Talent Show

The Talent Show

Connor was created with funny bones.

Honest-to-goodness-laugh-til-your-belly-hurts funny bones. We’ve enjoyed one of life’s greatest little pleasures time and again when Connor manages to free our souls with laughter. And it pleases him even more than us when he intentionally triggers the kind of laughter that makes our eyes tear. He laughs along with us, steps around in an little dance and his face glazes with the satisfied look of a job well done. And he laughs til his bones shake.

His other funny bones.

He was born with some crazy funny bones… unbelievably flexible, bendable, Gumby-sort-of bones and joints that pretty much resemble rubber bands. (Except for the bones in his foot, which instead of bending, break… as demonstrated when Connor decided that “he ain’t heavy, he’s my brother” and attempted to give his big brother a piggy back ride, but I’ll save that for maybe another time.)

Connor’s funny bones presented a big problem early in life. Born with significant hypotonia, Connor kind of resembled a rag doll with his arms and legs hanging by his sides. The experts called him floppy. And he was.

Those funny bones and floppy muscles didn’t support him enough to walk until he was three-and-a-half, but when Connor’s one-year-old sister at that time began to walk, he willed his bones into gear and got moving.

And Conn’s been moving every since, in crazy funny ways. So, in making those bones work for him, he recently decided to tap into the two sides of his funny bones for a talent show at his school.

Rock on, Pretzel Boy

Rock on, Pretzel Boy

While the other students prepared song numbers to sing, jokes to tell, sports to demonstrate, Connor decided to use his bones to become what’s now renowned as, “PRETZEL BOY”. Yes, he thinks this is funny. Yes, he does it with ease. And yes, he is now famous for his talented funny bones.

That’s my guy. Turning weaknesses to assets, complications into talents, funny bones into lots of fun. Take a look at pretzel boy rolling around the platform. You might not be able to see his hands while he’s got his legs behind his head, but he’s giving his audience the “rock on” sign.

Rock on, pretzel boy.

Posted by: Kathryn Craig | February 12, 2009

All you need is love. And love. And love.

Valentine’s Day is approaching.

And love is in the air.

We went this week and picked out two small stuffed dogs to give to two girls at school. One dog had a heart that said, “Hug Me”, the other had a heart that said, “XOXO”, and those small items made Connor’s day. He happily brought them to school this morning: one for “Gabby” and one for “Danielle”.

Mid-day, I received an email from his teacher asking, what happened to “Sarah”? Seems Romeo’s been doing a lot of juggling lately.

Sarah is the girl who captured his heart last year when he moved to his new school. But Sarah moved on to an off-site program. He still sees her at some events, makes silly noises, flutters his eyes and grins goofy grins when he’s around her, but ultimately she’s not around too often.

Then, to his delight Gabby declared that she’s now his girlfriend. He was thrilled with that idea, until Danielle brought him a valentine for a double shot of flirting fun. Romeo’s been juggling.

Ultimately, Connor’s on a quest for his “perfect ten”. In the process, he’s invented certain criteria he’d like met. Well, really, his list encompasses his perfect “five”. All three of those little ladies meet some of the criteria, but no one in particular meets ALL the criteria.

Here’s the list:
* Must be a girl. “I’m not gay.”
* Must have extra chromosome eyes. (He’s a Down syndrome snob)
* Must be close to my age.
* Must care about her body like I do. “I don’t like flabby.”
* Must be prepared to marry me when I turn 30.

For now, Connor will be loving Sarah and Gabby and Danielle for the bullet points that they do in fact meet, but not give in to exclusivity because, well,  none match the full list of five. He doesn’t think it’s too much to ask.

Happy Valentine’s Day.

Posted by: Kathryn Craig | February 2, 2009

The phone: curse or blessing?

A little over a week ago Connor and I sat in his annual CSE (committee on special ed) review meeting. This is a meeting in which past goals are reviewed, evaluated and developed for the coming year. It’s something I’ve done since Connor was… hmmm, pretty much, since he was born. Through early intervention, preschool, elementary school and now at high school level, I’ve taken a very active role in communicating and defining goals to help Connor grow into an independent adult.

One of those goals, beginning when he was in first grade involved helping Connor use a telephone. I have specified year after year that the goal be included in his IEP (individualized education plan.) Every year it has been. And every year I ask to add it to the IEP. To date, Connor hates to use the phone. He’s phone-a-phobic!

I’ve tried to get to the bottom of his fears and believe what might be the case:  Connor’s receptive language skills are more developed than his expressive language skills. He understands a lot more than he’s able to get out in a timely manner. It takes his brain longer to process the words. Face-to-face, Connor is fine and takes the time he needs to get his message across, using eye contact and body language as “filler” in the small gaps of silence while he processes his words and sentences. But the phone gives him a gap of silence that seems awkward and uncomfortable. He has told me, “My brain doesn’t work that fast.”

Nonetheless, phone skills are critical to any level of independence, be it allowing Connor to stay home while I run out for an errand, or enabling him to come home to an empty house and let himself in after school, or eventually live on his own. Therefore, I push the phone skills. And push. And push.

Well I think there’s been a wind of change. Connor’s teacher has taken this goal as seriously has I have. So to help Connor master and conquer his phobia, she encouraged the students to exchange phone numbers and call Connor. Our phone has been ringing ever since.

Now, I’ve come to the realization that within a special ed classroom, there are students who hate the phone. And there are students who love the phone. I mean, LOVE the phone. And dial it ten, twenty, thirty times in a row, even after completing an hour-long conversation.

I’m not so sure we’ll have to include phone skills in next year’s goal.

Repetition and familiarity is rapidly zapping the fear out of Connor.

Repetition and familiarity is driving the rest of us nuts. Truth be told, I’m questioning what I prayed for!

Posted by: Kathryn Craig | January 30, 2009

Saturdays in Winter + Southwest Michigan = Oh Happy Day

buddies1Saturdays are a pretty special day of the week around here lately… Connor’s bowling league has begun. It’s not that bowling is the highlight of his week (although it’s pretty high up there), and it’s not the new bowling ball he got for his birthday (although that’s up there too), but it’s the opportunity to see his friends who moved to another program in his school, at a different location.

Connor misses them, but not on Saturdays. It completes his week.

Posted by: Kathryn Craig | January 22, 2009

“Fellow Americans, I am proud to be your new President”

Connor’s preparing to have the US lookin’ good! Here are the responses he brought home from school as part of a writing assignment, “If you were President, what problems would you want to fix? Pretend that you are going to make an inaugural address.”:

workin' out

workin' out

Fellow Americans, I am proud to be your new President. Over the next four years, I promise to: show people how to get a six-pack stomach.

I think this issue is important because: you should look good.

I will accomplish this goal by: teaching people to do sit-ups and pull-ups.

In conclusion, I would like to say: I am working on my own six-pack. Right now I have a four-pack.

Get fit America.

Posted by: Kathryn Craig | January 21, 2009

We’re created for relationships.

Relationships are important to Connor. And he loves the bonds that relationships bring.

He loves his family. Intensely.

And he loves friends, having friends, being friends, and he never forgets friends.

A move to Michigan two years ago from New York created a loss in his life when he had to say good-bye to friends. Friends with extra chromosomes, and friends without. It’s been a challenge to forge new friendships.

I’ve heard it takes two to three years to feel at home in a new environment. So we’re on the cusp of Michigan becoming “home”. And we’re starting to see some friendships forming in Connor’s life. They’re not yet the sleepover-and-play-day friendships he left behind, but we’re watching people rise to a new level of significance in Connor’s life.

That’s exciting. For him. For us.

Posted by: Kathryn Craig | January 7, 2009

Marly and Marly and Me

Connor, Hudson & Murph

Connor, Hudson & Murph

There’s a special relationship between a boy and his dog. Well, two dogs. And Connor loves his dogs.

To celebrate his birthday, it seemed fitting to take Conn to see the latest hit movie, “Marly & Me”. Except we didn’t realize how closely the many stages of Marly resembled our two dogs at home. The young and in-between Marlys possessed very similar characteristics of our 9-month-old golden retriever Hudson. And old Marly looked too much like our 12-1/2 year-old yellow lab Murphy. So when Marly in the movie grew old and the family said good-bye, it was difficult for Connor. He leaned over to me and asked if Murph-Murph was doing okay at home.

At the close of the movie, Connor wanted to get home quickly to make sure Murphy was fine. He was. And that increased the celebration.

His dogs were fine, his family surrounded him and those are the makings of a very special birthday. Yes, he loved opening a few presents, but what made Connor especially happy was that his entire family gathered for his favorite activity… the family dinner. I find it amazing that he tends to get it, when, in our busy-ness we rush through our meals and relationships and on to the next thing. But it being a quiet Sunday evening at the end of the holidays and his older brother home from college, Connor was gifted with his very favorite thing, a family dinner.

After Connor went to bed that night, my husband reminded me of a quote from the movie and the correlation between what the dog taught the owner and what Connor is teaching us. The main character (based on the author John Grogan and his now-famous column) went on to say that his dog touched their souls and taught them important lessons about their lives. John Grogan writes in his book, “Marley taught me about living each day with unbridled exuberance and joy, about seizing the moment and following your heart. He taught me to appreciate the simple things- a walk in the woods, a fresh snowfall, a nap in a shaft of winter sunlight. And as he grew old and achy, he taught me about optimism in the face of adversity. Mostly, he taught me about friendship and selflessness and, above all else, unwavering loyalty.”

And maybe that’s why Connor loves his dogs. They get it too. It’s the simple things that matter.

When we choose to make Connor’s day, it’s all about seizing the moment, following our hearts and unwavering loyalty. A walk in the woods, a fresh snowfall, a cuddled nap in winter sunlight (usually preceeded by enthusiastic giggles) and yes, the family dinner make him feel alive, whole and loved.

Very loved.

Brother is still home. I need to go figure out what to make for dinner.

Posted by: Kathryn Craig | January 5, 2009

Oh happy day!

The day has finally arrived. Connor turned 17 today.
And his first comment to me was, “Do you know that I will be a man in one year, mom?”
Oh my goodness. I’m not one for old cliches, but time really does fly.

And as I do on every one of Connor’s birthdays, I reflect on what the day of his arrival was like.
I wasted a lot of tears.

I looked into the eyes of my little guy that day and instead of seeing the extra-chromosome twinkle, I saw the word, “retarded”.

And then,
I saw my pride.
I saw hopelessness.
I saw isolation.
I saw severe respiratory illness.
I saw failure.
I saw impossible.

But soon after,
God showed me humility.
God filled me with faith.
God brought lots of friends into our lives.
God touched Connor with His healing hand.
God showed me a future filled with love and acceptance and patience.
God made it possible.

The experts told me he may never speak.
I asked Connor to please stop being so chatty this evening.

So to the young man I shed too many tears over… happy birthday.

You are loved, and I am crazy about you.
God is working in you and through you.

Posted by: Kathryn Craig | January 4, 2009

Is tomorrow the future?

“For I know the plans I have for you, declares the Lord. Plans to give you hope and a future.”

This is a promise from God that I shared with Connor about a year ago. He’s banking on it.

It started when he began to yearn for a girlfriend. Actually, obsessing about it. Constantly. But this girlfriend has to meet certain criteria. She has to have extra-chromosome eyes. And she has to care about her body as much as Connor does. (I confess, he actually declared, “I don’t want a flabby girlfriend.” Connor exercises daily, trying to develop the perfect 6-pack abs.) And she has to love the idea of being in love. Because Connor loves the idea of being in love. But quite frankly, the pool isn’t all that big where we live right now, and he hasn’t quite found this perfect woman. Yet.

I mused about taking out a classified ad: SWM, 16, looking for SWF, 16 with extra chromosome eyes for fun friendship and love.

But, naaah.

However, the obsession increased. So I took out my Bible and shared Jeremiah 29.11 with Connor, telling him that God will bring the perfect girl He hand-picks for him at just the right time in his life.

Hope and a future! It satisfied him.

But then he began obsessing about the future.

A lot.

And eventually, “future” became a synonym for “girlfriend”. So scripture may as well read, “For I know the plans I have for you, declares the Lord. Plans to give you hope and a girlfriend.” Because that’s how Connor has interpreted it. And we haven’t been able to change that.

The latter part of 2008 was filled with the recurring question, “Is the future in 2009, mom?” And of course I responded with the affirmative, the future would be coming in 2009.

But now the future is here.

Or is it the present?
Is tomorrow the future?
Will tomorrow be the present?
But isn’t it the future?

We went to church this evening.
It’s 2009, and God, with His wonderful sense of humor, had someone quote Jeremiah 29.11 in the service tonight.

“Future, mom. Future. They said future. God knows it’s 2009, and they’re talking about the future in church. In His house. God knows the future is in 2009. Mom, is the future tomorrow? I would like the future to be tomorrow because it’s my birthday.”

Well, the future is tomorrow. But tomorrow will be the present. I think we’ll focus on “birthday present”… it’ll distract him from the future.

Maybe.

Older Posts »

Categories