Monday, November 26, 2007

Our Wishes

"Hey, I call the wishbone!" Joseph announces-- before anyone takes their first bite of turkey.

And then a little more tentatively, "Is that okay?"

Everyone is smiling-- and no one objects.

"Sure," I tell him, "but only if I get a shot at it too."

"Mom," he says, eyes rolling, "you'll just wish for a cure for diabetes."

We all look at him.

"I can live with diabetes," he continues, laughing. "No. I'm wishing I have a good regionals on Saturday."

"Joseph-- a card tournament?"

"Oh, yeah," he says, beaming.

I pick up my wine glass, take a sip of Cabernet, and remember something that happened only two weeks before...

------------------------------------------------------------------------------

We'd just left his endo appointment-- our first in the new clinic building.

Though Joseph's A1c had gone down (from 8.1 to 8), I was really hoping it would have gone down further.

That we'd have gotten it below 8.

Standing in the elevator, I kept hearing his doctor's reassuring words:

"Yes, we want him in the 7s, but this is still good-- most kids we see in middle school move up into the 9s, sometimes higher. And Sandra, his growth is excellent."

His growth is excellent. His growth is excel-


"How about McDonald's?" Joseph broke in.

"Huh? For lunch? Ahhh... no."

For the next few minutes, we talked about food options while making our way down several long, shiny new corridors, on and off yet another elevator...

And that was when everything around us began to look less new-- and uncomfortably familiar.

We'd taken a wrong turn.

And just like that, we were standing in front of a fountain I hadn't seen in over three years.

A wall of large, rough-hewed stones-- water, pouring in ripples over the face of it.

And at its base-- a shallow pool, littered with coins.

We're back. In the hospital-- just outside the cafeteria.

The conversations with Ryan, the crying-- the desperate throwing of every piece of change I had into that pool.

The wishing.

The praying.

It all came back in waves.

For a moment, all I could do was look at the thing.

And then -- stubbornly -- I walked forward, shoved a hand into my right coat pocket, pulled out two coins-- and handed one to Joseph.

"Here you go, Bud-- make a wish."

He paused, holding the quarter for about two seconds while looking thoughtfully at the falling water-- and then dropped his coin into the pool.

"Your turn, Mom."

Just as I was about to release mine, Joseph grabbed my arm.

"Wait! Mom- you're not gonna wish for a cure for diabetes, are you?"

"You bet I am."

"C'mon, Mom-- there are a lot worse things. What about AIDS? People are dying of AIDS. Or cancer?" he said, almost pleading. "This isn't so bad-- I can deal with this. Please, Mom - don't waste your wish."

I turned away from him, tossed my quarter, and watched it bounce off two stones before landing at the bottom.

"So what did you wish for?"

"What do you think?"

"Oh, Mom..." he said, shaking his head.

But then, he wrapped his arms around me.

And I'm not sure if he was thanking me or trying to make me feel better...

---------------------------------------------------------------------------

"So really, Mom-- what are you gonna wish for if you get the wishbone?

Wine glass still raised, I look meaningfully into my son's large brown eyes.

"What do you think?"


Tuesday, November 20, 2007

A Meme... with a few old snaps

Amylia, Jamie, and Heidi tagged me for the meme that's spreading like wildfire throughout the OC.

To participate, one must:

  • Link to the person’s blog who tagged you.
  • Post these rules on your blog.
  • List seven random and/or weird facts about yourself
  • Tag seven random people at the end of your post and include links to their blogs.
  • Let each person know that they have been tagged by posting a comment on their blog.

Seven, huh?

Well, here we go...

#1. Recently, I made the rather shocking discovery that I am incapable of telling a joke.

Now, it's not that I'm not funny.

Oh, I'm funny.

I just can't tell a joke.

How do I know this?

Because my husband proved it to me after dinner one night last week when, despite much coaching on his part, I could not tell a simple joke.

It kept coming out like this:

"A guy walks into a bar with a duck on his head. Bartender says: 'Hey, what's that duck doing on your head?' Ughhhhh... Wait, wait-- let me try again. A guy walks into a bar with a duck on his head. Bartender says, 'Hey, why is that thing on your head?' GAH!"

And so on.

(Big-time kudos to whoever knows the name of the truly awesome movie this pathetically-rendered joke comes from.)

#2. I was a thumb sucker.

Until I was nearly 8-years old.

Always the right thumb.

When asked why not the other, I told people the left thumb tasted like pepper.

#3. I came darn close to dying after giving birth to Joseph.

Darn close.

Two days after a perfectly normal (albeit long), intervention-free labor and birth-- I was admitted to the hospital with sepsis (an infection in the blood).


Thankfully, Ryan and Joseph were allowed to stay with me.

It took a week in the hospital and two
weeks recovering at home before I could
finally take my boy outside for a walk.







#4.
I have a trick left thumb. Ryan thought it best not to include a photo.

Let's just say it's tricky.

#5. When I was very young, my mother's nickname for me was "Tilly Tippy Twinkle Toes."

#6. As kids, whenever my siblings and I watched the Wizard of Oz, we'd yell "I'm the ___!"-- and then call out the name of the character we wanted to "be" for the duration of the movie.

I always chose the Scarecrow.

#7. And finally, I will end this meme on a totally random note:

My 80s haircut.

Admittedly, not all that outrageous compared to some.

Ahhh-- but look at the inspiration:




And then, that inspiration fully (and finally) realized at an office Halloween party--
c. 1986.

Oh yeah.

Big 80s.



There you have it.

I realize that most folks have already been tagged, but I'm tagging nonetheless:

Tom, Scott Marvel, Val, Elizabeth, Jen, and Wil-- if you haven't shared your seven already and would like to join in the fun, consider yourself tagged!


Wednesday, November 14, 2007

World Diabetes Day

He cried, saying that he didn't want to have diabetes.

"Mom, I'm scared."

We held each other, having absolutely no idea what this all meant.


I have such mixed feelings today.

Excitement-- about all of the attention WORLDWIDE that will be given the disease that invaded my son's body over three years ago.

And sadness-- over the fact that Joseph (and so many others) have to live with something that requires this much attention.

But still.

This is pretty damn amazing.

And really, really important.

Because think about it:

Every year approximately 70,000 children (nearly 200 a day) are diagnosed with type 1 diabetes-- a disease that, in the absence of insulin and careful monitoring every single day for the rest of their lives, would be a death sentence.

And even with insulin and careful monitoring, there is always the immediate danger of life threatening low-blood sugars; the specter of long-term complications.

Every. Single. Day.

Now, you might assume that most people have at least a basic understanding of this disease.

One that affects so many-- with such devastating consequences.

A disease for which there is no cure.

But, they don't.

In fact, according to a recent nationwide survey, "nearly 80% of the American public does not know the difference between type 1 and type 2 diabetes."

Worse, almost 70% believe a cure exists for type 1 diabetes.

So, people-- today is big.

Very big.

Because today is all about awareness.

About education and understanding-- and hopefully, motivation to act.

Please take a moment and think about how you can take part.

Maybe it's as simple as taking a walk.

Or gathering with others to witness (and be inspired by) a symbol of hope.

Or maybe it's giving time or money to an organization that supports diabetes research, education, and advocacy; or one that gets diabetes supplies to those who don't have access to the medication and education they need to survive.

Whatever you decide, just please let it be something.

For my son.

For all of the children and adults living with this disease.

And for those of us who love them.


Friday, November 09, 2007

Getting Back Up



Last Sunday.

On an unseasonably warm afternoon, I agree to take Joseph and his two new friends (12-year old "G"and his 9-year old brother "R") to an outdoor skateboarding park about 20 minutes from our house.

Sure, I've got a boatload of laundry to do, a garden to clear, groceries to buy...

But man, it is one beautiful day.

So I head out to the backyard to tell Ryan the plan-- and to see if he's all right with it.

You see, he's been out there raking for almost half an hour, and I'm feeling a bit sheepish about taking off like this.

But once I tell him, Ryan leans on his rake, smiles and says:

"Bring some coffee, a book, and a chair-- it'll be fun. And don't forget your sunglasses."

"But what about Evan?"

"You don't want to be following her around while the boys are skating-- and besides," he says, grinning broadly and pointing at the massive pile of crisp, golden leaves in front of him, "she's gonna want to jump in these."

A few minutes later, I'm driving three loud, giddy boys to a skate park.

The whole way there, they talk enthusiastically about "kick flips," "pop shove-its" and "dropping in," while I half listen-- and at the same time, do some preemptive thinking.

Okay, so he
had a late breakfast-- we'll just check his blood sugar before he starts skating, give him a snack, then go have lunch about an hour later.

His sugars were in a nice range this morning so we should be good.


Pulling into the parking lot, I see the skate park some distance away-- all concrete, peppered with several large ramps, platforms and metal rails, and surrounded by a chain link fence.

Immediately after I turn off the engine, Joseph and his buddies scramble out of the van, grab skateboards and helmets, and make for the park.

"Wait! Joseph, come here-- I want you to check your sugar before you skate."

R is already halfway to the park, but G rides his board back to the van with Joseph.

He watches carefully as Joseph pricks his finger, touches it to the end of a loaded test trip-- and then (as always) covers the meter's display with one hand until he hears the beep.

125

More calculations.

No insulin on board... he's gonna be pretty active...

"Bud, how 'bout you eat this chocolate chip-peanut butter granola bar?"

"Sure," he says grabbing the bar from my outstretched hand. Immediately, he tears the thing open and takes a huge bite.

"How about you, G-- would you like one, too?"

"Yeah-- thanks," he says, eyes lighting up.

Five minutes later, the boys are riding up and down ramps, doing tricks... and I'm settled in on my lawn chair just outside the park's open gate-- sun on my face; a thermos full of warm coffee in one hand, a book about XHTML (I kid you not) in the other.

Ten minutes later, Joseph falls.

Hard.

"Bud, are you all right?" I call out, stifling a gasp.

"Yeah," he says, but he's slow to get up. He'd been coming down a high ramp when his board flew out from under him.

G skates over to him, but Joseph waves his friend off and is soon back on his board.

I close my book.

That was a tough one-- but he got right back up... awesome.

At that moment, while marveling at my son's resilience, I see him skate awkwardly over to another ramp, and then stumble off his board.

"Bud, are you- "

"I'm fine," he says.

But he's not. I know he's not.

And about 30 seconds later-- he knows it, too.

"Mom, I'm feeling kinda hungry," he says-- and then he walks slowly over to where I'm sitting, with G and his brother following right behind.

"Bud, you just had that granola bar, and I left the wipes in the car-- I'll be back in less than a minute, and then you can do a check." Turning away from him and his friends, I sprint toward the van.

But Joseph doesn't wait-- before I get far, he's calling me back.

"I'm 42!" he yells.

He was 125 less than 15 minutes ago... and he didn't even wash his hands...

I spin around, run back to where he's standing, and for about a second, am struck by how pale he looks.

How it happened so fast.

"Take five tabs, Bud."

Joseph shoves several large glucose tablets into his mouth, while his friends stand on either side of him-- both wearing the same concerned expression.

They haven't known him long -- maybe three weeks. And this is the first time they've seen him low.

After eating the tabs, Joseph insists on going back in the park with his friends-- and sitting at the top of a ramp several yards away while he waits for the glucose to start working.

"It'd be better if you stayed he- " I start to say, but the words fall away.

Full of fear, I watch him climb that ramp, and then I can only see his legs-- another platform obstructs my view.

It's hard, not going after him.

But he wants to be in there, with his friends-- even if he can only sit and wait.

A long 15 minutes later, he's back up to 89.

And after quickly eating a bag of cheese crackers, he's back up on his board.

That was a tough one-- but (thank God) he got right back up...

And again, I marvel at my son's resilience, as I watch him skate fast and sure over concrete-- to the top of yet another ramp.


Monday, November 05, 2007

Didn't See This One Coming



Pulling away from the school, I check the rear view for cars-- and for a glimpse of Joseph's face.

He's looking out the window-- his expression, a blank.

"Honey, so you'll probably have to wear braces-- but it won't be forever. Maybe a year or two-- tops."

"I really don't want braces, Mom."

"I know, Bud-- but if you need them, we gotta do it. Hey-- remember how that orthodontist we saw a couple of years ago told us you had a 'subtle underbite'? He thought you'd need to wear head gear, and then braces."

"Yeah, I know," Joseph says in a resigned tone.

"Well, he also said we could wait a while-- so listen, I'm going to ask this guy about the timing for all of this. And if we can wait a year, then I think we'll probably do that... but Honey, if this orthodontist says we need to do something soon, then you'll likely get braces this year."

Though I really hope we can wait. It's a lot of money...

Twenty minutes later, Joseph is lying back in a fully-reclined exam chair-- his new orthodontist bending over him.

I take a seat several feet away, and watch gloved fingers move swiftly over my son's teeth and jaw.

"Hmmm... " the orthodontist says, fingers still moving, "the spaces between his top front teeth have kept those teeth out in front of the lower ones."

"What?"

"You see, if we look at his profile, it's perfectly normal, nothing like, say, Jay Leno's-- but if we look at the rear molars, he definitely has an underbite. And a tricky one, at that."

Immediately, I'm out of my chair and peering into my son's mouth.

"Oh, yes-- have a look... right over here," the orthodontist says, pointing a gloved finger at Joseph's left rear molars.

"See how that second-to-the-last top molar is hitting the the last bottom molar? Well, it's not supposed to do that. And I'm afraid it's much more pronounced here than on the other side. This asymmetry is what makes it tricky."

"Oh."

"Let me show you with a model."

He walks over to his desk and picks up a pair of false teeth. Joseph climbs out of the exam chair and joins us, looking fascinated -- and a little nauseous -- as the orthodontist demonstrates how his bite is off, how his jaw is moving forward.

And how, over time, it will probably get a whole lot worse.

"All right then," I say, "what's the treatment plan-- and when can we start?"

"Now, Joseph is going to do a lot of growing over the next number of years, " the orthodontist begins slowly, "and because of this, we'll need to wait until he's done growing before trying to correct the issue."

"Excuse me?" I ask, staring at the man-- shocked.

"I'm sorry," he responds, an unmistakable note of sadness in his voice, "but you see, as Joseph grows, his lower jaw will likely continue to move forward... and well, trying to correct the misalignment before he's finished growing won't permanently correct the problem."

"And how do you correct the problem?"

"I'm afraid that he'll likely need surgery on his jaw-- at around age 20."

At first I don't say anything-- I can't.

Joseph steps away from the orthodontist's desk, goes to a corner of the room and sinks down onto several over-sized, stuffed animals lying there.

He leans back into soft fur, then turns his head away from us.

"Wait, wait- " I sputter, "the other orthodontist talked about head gear, about braces- I don't understand- "

"Head gear would be used to move the top jaw out-- Joseph doesn't have that issue. And braces won't affect the growth of his jaw. This is something that shows up in about 3 to 5 percent of the population
and- "

"Is there anything we can do now?"

"Well, we can take full x-rays to get a baseline-- so that we can monitor the issue- "

"But, is it possible that this won't be an issue-- that it won't get any worse?"

"Yes, that's possible," he responds, "but highly unlikely. It's more likely that the lower jaw will continue to grow forward-- more so when he goes through periods of rapid growth."

"I see."

Before leaving, we set up an appointment for x-rays in a few weeks-- and a follow-up consultation in January.

"No rush," the orthodontist tells the young woman who sets up these appointments.

No rush.

In the car, I tell Joseph that we'll do the follow-up, get a second opinion, and go from there.

"It's gonna be fine, Bud-- just fine."

After bringing him back to school, I try telling myself the same thing over and over.

But I'm furious.

Why does he have to worry about this, too?


I get home -- where Ryan is waiting -- and break down.

Then I go to the laptop, google "child with an underbite," and find out that this orthodontist's "wait-until-he's-done-growing-and-see" approach is the standard of care for this thing.

And then I see photos of older teens and adults who have waited and seen.

I also discover that the cost of the eventual corrective surgery is approximately $25,000-- and that insurance often doesn't cover it.

Damn it!

My son is dealt yet another blow-- and again, I'm helpless to stop it.