My Big Weekend

"What if Evan wanders away while you're coaching on the field? Or Joseph's pump gets left behind in the dugout-- you know, that almost happened at the last game. He'd picked up his glove and bats and was leaving when I saw his bag was still there. And he was still disconnected. If we lose that pump, they won't replace it."

The panic behind these words was palpable.

"Stop. STOP!" Ryan said, taking firm hold of my shoulders. "Now listen-- I am a responsible person. And I love my children. They're gonna be just fine. I won't lose Evan. And I won't lose Joseph's pump. His blood sugars will go up and down-- but they always do that. He will be fine.

"Just, please go and relax. Enjoy being with your sisters. And HAVE FUN! Okay?"

I nodded my head. Still stunned at the very idea of leaving my husband and kids for three days.

You see, I've never been away from Evan for more than a few hours. In fact, the only time I'd ever gone on an overnight without Joseph was when he was three. And even then, it was just one night.

And of course, it was before he became diabetic.

Three. Days.

As the weekend grew closer, fears about leaving put my stomach in knots-- until I sort of spewed them all over Ryan just before I left.

Astoundingly (to me anyway) his calm reassurances were incredibly effective-- I drove to Chicago on Friday and spent three wonderful days and nights exploring that city with my two younger sisters.





We walked, talked, laughed and just plain hung out.



It was more grand than I could ever describe here.

So how did things go back home?

Well, Ryan and the kids played mini golf, saw Over the Hedge, and went out for ice cream. At night, they watched old movies (Dr. No, The Crimson Pirate). They even had lunch at McDonald's-- a rarity here -- resulting in major points for dad. (By the way, Evan lobbied hard for lunch at McDonald's today... uh no.)

Of course Ryan was right about everything he'd said before I left-- he didn't lose the kids or the pump. And yes, Joseph's bgs were all over the place.

And we were all just fine.

Youth Ambassador

Joseph's experience at the Tour de Cure was fantastic-- as wonderful as those who commented on my earlier post said it would be.



He addressed participants as they prepared to start-- telling them about his pump, about how he liked going to diabetes camp because he got to meet a lot of new people (I noted that he didn't say "people with diabetes").

Oh, and he also mentioned how much he liked getting to "meet girls."

Hmmm.



Then, Joseph and the other two youth ambassadors sent off the riders... they would do this three times-- for the 100, 50 and 10k.



He sang "Mustang Sally" with one of several bands that performed on Saturday.



And even volunteered to help out pro mountain biker, Chris Clark, do a stunt demo.



Later that evening, Joseph appeared on the local CBS news in a segment describing him as "a boy with Type 1 Diabetes who struggles to be like other kids at school."

There he was-- on camera, telling a reporter that:

"It just takes away... it takes time.

Like-- at school when I check my blood sugar, I could be just eating my snack. But no, I have to check my blood sugar, call my mom, do a bolus... "

As I watched my son say these things, I hoped that anyone who met him that day-- who saw him on television at that moment-- came away with just a little more understanding of what it means to live with diabetes.

And what did Joseph think?

"Mom, this was just the BEST day. Let's do it again next year!"

Opening Day

Ten days ago, Joseph kicked off his second season playing little league baseball.



Another almost three months of afternoons and evenings at the ball park...

It'll be great-- but it's also gonna be really long.

Don't get me wrong. We all LOVE baseball. And it was a lot of fun last year.

But last year, Joseph was taking in a lot less insulin (8-9 units/day vs. the 15-19 units/day he takes now). What this means is that being disconnected from his pump -- which is what we did while he played last season -- may have a much greater impact on his blood sugars.

In the course of an hour and 45-minute game, he could go high-- very, very high.

Now, we could just have him wear his pump.

But this year he's playing at a level where kids pitch-- no more pitching machine. Thus, you tend to see many more kids getting hit by pitches. Also, because he's being active, we thought that bg checks and reconnecting for small corrections halfway through each game would work well. It did last year.

And you know, he really liked having that break from wearing the pump.

So how did we do on Opening Day?

Game time was 5:30 p.m.

An hour before, Joseph's bg was 199-- high, but not bad considering he hadn't eaten in awhile and he'd soon be active. Also, we planned to eat dinner later in order to avoid higher sugars during the game.

Ryan (who is the assistant coach this year) went to the park with Joseph, while I got Evan set to go. On arrival, Evan and I took a seat in the first row of the bleachers, right behind the first base line-- and about ten feet from our team's dugout. The boys crowded around the head coach to hear the lineup, as I called out to Ryan:

"Did he do a check?"

"Yeah, he was 86."

"What?!"

"He had two glucose tabs."

Immediately, my heart is beating fast.

86... 86... He was 199 an hour ago. That's over a hundred point drop...

"He's got to eat more. Give him some peanut butter crackers," I say, feeling incredibly helpless.

Ryan nods, and heads straight over to Joseph.

While his teammates gather their gloves, my son eats his snack.

Please let those crackers be enough.

Turns out, the head coach is putting Joseph in left field for the first two innings.

Good.

Though he loves to play catcher, (and will get his shot in the last two innings), he shouldn't be running around much out in left.

But it's so far away.

My heart aches as I watch him take the field.

Slow down... don't run so fast.

Over the next 45 minutes, the sun sits low in the sky-- as a result, I watch my son in the outfield with the side of my hand virtually glued to my forehead in a sort of desperate salute.

When Joseph finally comes up for his first at-bat, he draws a walk.

Thank you.

At 6:30 his bg has risen to 175, and the knot in my stomach finally begins to loosen. I relax and enjoy the rest of the game.

Sure, they lost-- and by the end, Joseph's bg was 200.

But by bedtime, he was 138.

So in my mind, we won.

We Did It!

Health Care Coverage Protected for Millions of Americans with Diabetes

ALEXANDRIA, VA (May 11, 2006) L. Hunter Limbaugh, Chair of the National Advocacy Committee of the American Diabetes Association, issued the following statement in response to today’s defeat of “The Health Insurance Marketplace Modernization Act” (S.1955), which would have resulted in the loss of critical health care coverage guarantees for over 85 million Americans, including millions of Americans with diabetes. On Thursday, the U.S. Senate, on a 55-43 cloture vote, failed to keep the bill viable for future consideration.

“Today, millions of Americans with diabetes dodged a bullet. Because of the vote in the U.S. Senate, state health coverage for diabetes has been protected. We are proud of the dedication and passion of tens of thousands of diabetes advocates who, for several months, have contacted their elected officials to express their strong opposition to this legislation. We thank all Senators who took the time to hear those concerns.

“This bill was fundamentally flawed, as it would have jeopardized the health care coverage that millions of Americans with diabetes rely upon daily to manage their disease and prevent its serious and costly complications. S.1955 would have enabled health insurers to bypass existing state health protections, including coverage in 46 states and the District of Columbia, for life-saving diabetes supplies, medication, education, and treatment. Moving forward, ADA is eager to work with legislators from both parties to expand affordable, adequate and accessible health insurance to small businesses and other Americans who are uninsured and underinsured.”

Statement of the American Diabetes Association on Today’s Cloture Vote on S.1955, the “Health Insurance Marketplace Modernization Act”
Taken from the ADA Advocacy website

I'm cutting and pasting and crying right now as I think about what the defeat of this bill means for my son and for everyone else with diabetes.

Thank God.

Mistakes

"Zack and Michael are gonna see Ice Age: The Meltdown tonight . . . and, well, they invited me to come
too . . . "

A pause.

" . . . so can I go with them?"

"What time does the movie start?" I ask with a smile.

The look on Joseph's face is priceless.

"It's at six-- does this mean you'll let me go?"

"Yup," I say with a nod. "Hey, is anyone else going?"

I'm hoping he says Zack's mom will be with them. While Michael is a really nice guy and a terrific dad, his wife is a nurse.

"No-- just me and Zack. But Michael will have his cell phone, and I'll have the black bag."

"Sounds good, bud."

At quarter to five, Michael calls to tell me that he's leaving with Zack in a few minutes to grab a quick dinner before the show.

"Joseph is welcome to join us. We're going to Delitalia."

With that, my heart sinks because we've never eaten at this place. And I know Michael wants to go right from the restaurant to the movie.

I ask him to call me back in five minutes.

A quick internet search yields the restaurant's website, a menu-- but no nutritional info.

Damn . . . well, we're just gonna have to wing it.

When he calls back, I tell Michael that Joseph can join them (which prompts some major arm pumping by my son)-- just call me from the restaurant and we'll figure out the carbs.

Thankfully, Joseph eats a sub sandwich and a bag of chips-- no problem there. But then there's the movie popcorn.

Michael waits patiently on the other end of the phone as I figure out the total carbs for Joseph's bolus.

"Okay, here's what I want him to do-- we're gonna bolus 60 grams for the sandwich and chips, then add another 20 for the popcorn. I'm going real conservative on the popcorn because he had a low earlier, and was pretty active this afternoon. So tell Joseph-- 80 grams, 1 to 20. And it's a combo bolus-- 60/40 over three hours."

I can hear the boys horsing around in the background as Michael writes this down, and then says "Great, we're all set."

And just like that, Evan and I are back filling containers with potting soil and flowers, while my son -- just like any other 10-year-old kid -- is off to dinner and a movie with a friend.

It's after eight when a silver CRV pulls into our driveway. Joseph steps out, looking at the ground, his small black backpack slung over one shoulder. I open the front door, wave to Michael as he backs out, and suddenly find my son's arms around my waist-- his head buried in my chest.

"Honey, what's wrong? Are you okay?"

I take his face in my hands, and am startled by the miserable expression I see there.

"Mom, I'm so sorry" he cries, tears rolling down his cheeks.

"What is it?"

Now I'm scared.

"I just bolused for the popcorn, in the car on the way home. For 35 grams. And I was saying it out loud, and I said a unit and a half, and then I did it. Then, like a few minutes later Michael said I already bolused for the popcorn at the restaurant."

Oh no.

"Calm down, honey. It's gonna be fine. Let's just check your sugar, and we'll deal with it. It's okay. Really."

"Mom, I told Michael, I said 'you should have told me before I bolused-- I just gave myself insulin.' But he didn't say anything. He didn't even care."

"Well, he doesn't really know as much about this stuff," I say -- while fighting back a flash of anger at Michael for being so callous, but then:

I should have made sure he knew more.

Still crying, Joseph checks his sugar. He's 344. No surprise given how upset he is, the usual rebound from an earlier low, and the fact that it's so soon after he ate dinner and all that popcorn. And his meal bolus is still active.

Still active . . .

"Wait a minute! Honey, we did a combo."

"I know. I cancelled it in the car."

"You did?"

"And I suspended my pump for the rest of the ride home."

Now I'm crying too.

"Honey." I say, his face again in my hands.

"You are brilliant. You did all the right things. What happened was a mistake. People make them. But, my God, you knew just what to do. And you realized it faster than I did."

"Mom, I was so afraid to tell you. I thought you'd be really upset with me."

I was stunned.

How much pressure must this boy be under? And how much of it comes from me?

"No, no, no," I say gently, wiping the tears from his cheeks.

"Please don't ever be afraid to tell me anything-- no matter what. You're gonna make mistakes-- and so am I. We wouldn't be human if we didn't."

And then, for a long time we say nothing.

I just hold him close.

He's Come A Long Way

Later this month, when the ADA's Tour de Cure takes place just 25 minutes from our house, our family will be there-- volunteering at a diabetes fundraiser for the very first time.



Ryan and I will be working the registration table-- signing in riders, collecting donations.

Meanwhile, Joseph will stand on a stage, microphone in hand-- talking about what it's like living with diabetes; sharing stories about his experiences at the ADA's summer camp last year; and sending off the riders.

He will be one of the ADA's Youth Ambassadors-- representing both the organization and the disease.

Wow.

To understand just how huge this is, you need to read this post from last spring.

Because of what happened back then, I was a bit hesitant when the ADA's local coordinator had asked if Joseph would be willing to be one of the "faces of diabetes" at the Tour. She'd read the blog, you see, and thought Joseph would be a real inspiration for the riders.

But I didn't want this event to negatively impact my son-- to make him think about or fear the worst-case scenarios of the disease. Also, I worried about how he would feel talking about the role diabetes plays in his life. Would doing this make him feel the weight of it any more than he already does?

Well, we had a sort of test run last week when we attended the volunteer orientation. It was held in a large boardroom-- there were maybe 50 people in the room when we arrived. At first we stood in the back, listening to the opening remarks-- while Evan looked greedily at the many balloons scattered festively on all of the tables, and Joseph looked nervously at the crowd.

As we scanned the room, looking for a place to sit, the ADA coordinator came over and asked if Joseph would mind coming to the front and speaking to the volunteers. Another Youth Ambassador-- an 11-year-old girl named Becky -- would be joining him.

"Yeah, okay," Joseph said, still looking nervous.

Ryan and I sat down with Evan at a table near the front, as the coordinator introduced Joseph and Becky.

"Now Joseph, why don't you tell everyone what you liked best about diabetes camp."

He looked down a moment, as if he might find the words on the floor in front of him.

My heart was in my throat.

Why did I put him in this position? Here he is, in front of a crowd, no preparation, having to talk about this damn disease! What was I thinking?

But then he began to speak, at first tentatively--

"Well, it was really cool that you could go out on the lake alone . . . without any counselors . . . well, uh . . . we weren't completely alone . . . there were nurses in boats-- Oh!" he said suddenly, with enthusiasm, "I really liked that we could go fishing on our own!"

A pause.

And then, looking a bit sheepish, " . . . though I never caught anything."

Everyone laughed. And that was all he needed to hear.

When asked about his pump, Joseph pulled it out, explained how it worked, and lifted his shirt to show his site. He told them all how he'd decided to go back to shots after going to camp because "so many kids at camp did their own shots, they did it all" and he wanted to try it, too. But then, he said with a huge smile "after being back on shots for a day, I really wanted my pump back!"

And when the ADA coordinator asked about the camp's "mud pit," Joseph responded, gesturing with his hands outstretched:

"They didn't let us go in the mud pit. They told us we were too young!

We were Nine. Years. Old.

And it's mud- MUD! We were too young to play in mud!?"

Again, everyone laughed.

Throughout the remainder of the evening, people came over to speak with Joseph. They told him he did a terrific job. They asked him about his pump, about how he deals with diabetes.

He answered all of their questions with a level of ease that just blew me away.

As the meeting came to a close, Joseph asked the ADA coordinator if he could be a Youth Ambassador next year.

And then, he asked me if we could actually ride next year.

Wow.

So it's all good . . . well, almost. You see, the one thing about Joseph's role that still troubles me is the idea of my son being (in essence) a "poster child" for a disease.

I never wanted that for him.

But at the same time, I couldn't be more proud of him for doing it.

Emotions I need to reconcile before the event, I guess.

Still Here

Sorry for the long gap between posts, but it's been really busy over here... to give you an idea:

I've been outside. A lot.

Marveling at my spring blooms...











So mostly, a whole bunch of weeding, mulching, and just playing outside with the kids-- which, quite frankly, has been very good for all of us.

Now, when I have been inside, I've wanted to blog.

Honest.

But Evan has kept me busy...



Who could resist playing with all of those Polly Pockets when she's set them out so nicely?

And, of course, Bat Wing Girl (complete with light saber) refuses to go on any mission without her sidekick, Super Girl (that would be me) and a host of villains (again, me).



Thus, the blog has suffered... and well, so has the house (with all this spring fever and pretend play going on, there hasn't been a whole lot of cleaning happening either).

Now, I realize I haven't written much in this post. And man, there really is a lot to write-- especially about Joseph ( i.e., a really scary incident at school -- don't worry, he's okay-- and his upcoming adventure as a representative for the ADA and diabetes at the Tour de Cure).

Rain is in the forecast for a good deal of this week, so maybe I'll have time to share.

Unless of course, I'm too busy trying to save/take over the world.