Joseph's Meeting

"Hey bud, how'd you like to come with me to the next JDRF meeting?"

It had been several months since he'd gone to one.

"I don't know, Mom. It's not as much fun for me there as it is for you. There's hardly ever anyone my age at those meetings."

"Wait-- remember that boy I told you about? The one who got the Guardian? Well, he's gonna be there."

Pause.

"How old is he, again?" Joseph asked, giving me a sideways glance.

I smiled and said, "Ten."

"Okay. Then I'm definitely going."

"And bud, this is a good opportunity for you to find out what it's really like to wear the Guardian. So don't be shy about asking questions."

Joseph just gave me a look that said, "Since when have I ever been shy?"

It was settled.

Last night, as we entered the lobby where all the kids hang out (while the parents meet in a nearby conference room), we saw two boys with blond hair sitting opposite one another at a small table.

They were playing chess.

Joseph walked right up and looked at them for a split second, then pulled up a chair.

Immediately, I recognized the younger of the two boys as Tommy.

Before long, the three boys were joined by several girls varying in age from four to thirteen.

One had brought a soccer ball.

Throughout the remainder of my time at the meeting, I heard loud shouts coming from the lobby. I reluctantly stepped out of the conference room a couple of times to check on the kids (Joseph's voice was among the loudest-- though maybe only to me).

They were having a blast-- girls taunting boys, boys chatting it up, playing chess . . .

After the meeting, as Joseph and I walked together out to the car, he asked if Tommy and his older brother (Andy) would be there next month.

"Well, they have to drive an hour and a half to get here, so I'm not sure."

"Oh." He was very quiet for a couple of minutes.

However, once we were out on the highway, he was off to the races.

"Mom," he began with a laugh, "You know what Andy said to me? He said, 'You're a 53-year-old man trapped in the body of a 10-year-old.' Isn't that funny?"

He paused a moment, then:

"I'm taking that as a compliment. I mean, he said he couldn't believe I was in the 4th grade."

"Honey-- definitely a compliment," I said, smiling broadly.

"So Tommy kept calling me 'Jamie.' He said I looked more like a Jamie. And there's a skateboarder named Jamie, so that might be why. Anyway, I started calling him 'Bam' because he was wearing an Element t-shirt and-- you know who Bam Margera is, right? The skateboarder?"

"Yes, I do."

"Well, I wanted to call him something else, too."

Another pause.

"You know, he's a really nice kid," then Joseph spoke as if he'd just had a wonderful realization, "and hey, I have another 'pump buddy' now-- that's what I like to call them. Pump buddies."

This was the first time Joseph mentioned anything having to do with diabetes, so I took it as an opening.

"So did you ask Tommy about the Guardian at all?"

"Heck no!" I could see his eyes rolling back in the rearview.

"Mom, do you think we want to talk about diabetes? We have to deal with that stuff every day. Why would we want to talk about that?"

"So what did you guys talk about?"

"Just stuff. Oh, and Andy beat me in chess--I really thought I could beat him. Maybe next time . . . "

His voice trailed off, and then:

"Mom, it was a really good meeting. You know?"

"Yes," I said, smiling. "I know."

A Dangerous Bill

This week, while listening to diabeticfeed, I discovered the status of a truly frightening piece of legislation:

The "Health Insurance Marketplace Modernization and Affordability Act" or "S. 1955."

It wasn't the first time I'd heard of this bill. Back in November, I'd read a disturbing article that outlined some of the devastating consequences of S. 1955-- a bill that supporters believe will help more Americans gain access to health insurance.

In reality, should this bill become law, it would jeopardize health insurance coverage for diabetes medicine, supplies, screening tests...

In other words, everything my son needs to stay alive and healthy.

Needless to say, I worried about this thing for weeks-- imagining what would happen if my son's pump, test strips, insulin were no longer covered by insurance.

If regular visits with the endocrinologist, annual eye exams, tests for thyroid, celiac, kidney dysfunction-- were all no longer covered.

But wait, under this new legislation surely there would be some kind of health insurance that would cover all of these things?

There had to be.

Yes, in fact there would be (in some cases) options--but options with high deductibles and no premium restrictions.

God knows what we'd be paying for insurance if this bill became law. What my son would be forced to pay-- if in fact, he could afford it-- down the road.

And what if he had nothing?

Yeah, this bill scared the hell out of me.

So what did I do about it?

I forced the damn thing right out of my mind, because there was just no way something that reprehensible could pass in this country.

Maybe S. 1955 could pass in 1955.

But not in 2006.

Well, last week, S. 1955 passed by an 11-9 vote in the Senate Health, Education, Labor and Pensions (HELP) Committee.

What this means is that S. 1955 (unlike so many bills that never make it out of committee) will be voted on by the full Senate.

And what happens if this piece of legislation makes it to the White House?

Do you think President Bush will veto it? A bill that will dramatically cut costs for health insurers? For business owners? Corporations?

Pointless questions, I know.

So, we've got to do something.

Today, I found an excellent post on this very issue that outlines ways in which we can all act. Please go and check it out.

And call or email your Senator.

Or go to the ADA website , or call the American Diabetes Association at 1-800-DIABETES (1-800-342-2383) to find out other ways in which you can make your voice heard.

If you're a blogger, post about this thing. Help make more people aware of what's at stake.

And for those of you reading who do not have diabetes, who don't have a child with the disease, please consider this:

It's not just my son's future we're talking about here. Not just the millions of Americans who struggle with diabetes each and every day.

S. 1955 would affect, not only diabetics, but everyone.

Please read the following letter as it gives a sense of how this bill will impact you and your family:

March 7, 2006

Dear Senator:

The undersigned organizations are writing in opposition to the Health Insurance Marketplace Modernization and Affordability Act of 2005, S. 1955. This controversial legislation would preempt state insurance laws, not just in the small group market (as is done by Association Health Plan legislation), but also in the individual and large group markets. S. 1955 would thwart years of state efforts to make sure that consumers have adequate health coverage.

S. 1955 would take away the states’ autonomy to regulate health insurance. The bill preempts state benefit, service and provider laws that states have enacted to ensure that consumers have adequate health coverage. Cancer screenings and treatment, diabetes supplies and education, mental health, preventive care, rehabilitation, well-child care and immunizations, maternity care, and other vital benefits and protections would be lost. S. 1955 also exempts Small Business Health Plans (SBHPs, also known as AHPs) from state benefit, service and provider access laws.

Insurance companies, instead of state-elected legislators, would now decide the benefits that consumers should have when they purchase health care. States would have no recourse to protect their own residents and they would lose their incentives to enact laws in the future and be laboratories for healthcare innovation.

An insurer would only need to meet one requirement in order to bypass a state’s protections: offer a second plan that resembles one offered to state employees in one of the five most populous states, a requirement that allows an insurer to choose a high deductible/HSA plan that can require a family to pay as much as $5000 out-of-pocket (after paying premiums), before coverage kicks in. Again, a state has no recourse if the plan does not meet the needs of its residents.

S. 1955 also would preempt stronger state laws that limit the ability of insurers to vary premiums based on health status, age, gender and geography. For many older, sicker Americans and those with complex health needs and disabilities, this would price them out of the health insurance market, undermining the stated purpose of the legislation. The bill imposes on all the states an outdated model law created by the National Association of Insurance Commissioners (NAIC), rather than using the NAIC’s current model standard that is more protective.

A bill that preempts over 1000 state laws should warrant review before it is moved quickly through the Health Education, Labor and Pensions (HELP) Committee and considered on the Senate floor. There is no evidence that this bill will lead to more affordable coverage or increase the number of Americans with adequate health insurance. As we have found through analysis of the federal AHP legislation, a proposal that purports to provide more affordable and expanded coverage sometimes can fail to do what it claims and even make existing access and cost problems worse.

While the sponsors of S. 1955 have made a sincere effort to address shortcomings of the AHP legislation, their solution makes things worse by endangering the quality of health care for the 68 million Americans in state-regulated group health plans and 16.5 million with individual coverage. We urge your opposition to this legislation.

Sincerely,

American Academy of Child & Adolescent Psychiatry
American Academy of Pediatrics
American Academy of Physician Assistants
American Association of People with Disabilities
American Diabetes Association
American Federation of State, County and Municipal Employees
American Chiropractic Association
American Federation of Teachers
American Nurses Association
American Pediatric Society
American Podiatric Medical Association
American Psychological Association
Arc of the United States
Association of Medical School Pediatric Department Chairs
Bazelon Center for Mental Health Law
Brain Injury Association of America
Communications Workers of America
Department for Professional Employees, AFL-CIO
Families USA
Guttmacher Institute
International Association of Machinists & Aerospace Workers
International Brotherhood of Electrical Workers
International Longshore & Warehouse Union
International Union of Painters and Allied Trades
National Association of Social Workers
National Disability Rights Network
National Family Planning and Reproductive Health Association
National Mental Health Association
National Spinal Cord Injury Association
National Partnership for Women & Families
National Women's Law Center
Planned Parenthood Federation of America
Small Business Majority
Society for Pediatric Research
United Cerebral Palsy
United Steelworkers International Union (USW)

[Emph. added]

March Madness

Joseph has been watching the NCAA tournament with amazing interest— despite having shown almost no interest in the basketball hoop that sits dismantled on our back patio, waiting for the snow to melt from our driveway. For spring to take hold.

But he's caught up, and he doesn't want to watch alone.

"Mom, who should I root for? Wichita or Tennessee?"

I stepped into the living room to answer my son, who remained sitting on the floor, eyes glued to the TV, waiting for my response.

"Umm... ahh... I'm thinkin' Wichita because they're a midwestern team. Are they the underdog?"

"Yeah, they're ranked 7th and Tennessee is ranked 2nd. "

"Then definitely Wichita."

"Cool."

He was in. No doubt about it.

But not me. I hadn't followed basketball in many, many years. And never college ball.

It was always the NBA for me.

Beginning over 20 years ago, when I lived just outside of Boston. When the Celtics of my youth and young adulthood -- Dennis "DJ" Johnson, Danny Ainge, Robert "Chief" Parrish, Kevin McHale, and (she takes a breath) Larry Bird -- dominated the game.

That was when there was no "Fleet Center," only the Boston Garden.

Or rather, "The Gahden."

Yeah, I'd been there. More than once. Saw Bird and the rest of that fantastic five play. And if I couldn't be at The Gahden, I watched the boys on TV. And if I couldn't watch, I listened to the gravelly voice of Johnny Most call the game from my car radio. Hanging on every word.

Then, at age 26, I moved to Chicago.

And saw Larry Bird & Company take on Michael Jordan and the Bulls at the Chicago Stadium.

My. God.

Eventually, one by one, those Celtics retired. And the team was just never the same.

Living so far from Boston, and not having cable TV, I rarely saw the Celts anymore.

And bigger things started to happen in my life. I didn't have the time or energy to become emotionally vested in a basketball team (The Red Sox and the Cubs took up about all of the sports love I had left to give.)

So here we are, in the midst of March Madness. Joseph had caught the fever, but really, I had no interest.

Quite frankly, I was a bit annoyed that all of this basketball was pre-empting Survivor for three weeks.

And then something happened. I sat down and watched the rest of that Wichita game with Joseph. My God, those kids could play. And Wichita pulled it out, in amazing fashion. Then we watched the Fighting Illini lose a thrilling game to the Washington Huskies.

Wow.

But, was I in?

Well, almost.

You see, the next game was Indiana vs Gonzaga (Who?).

No interest.

Though many of you will already know the significance of this game, I was clueless.

As I was leaving the living room, Joseph said:

"Mom, I think I'm goin' for Gonzaga. I know they're not the underdog, but dad doesn't like Indiana, and I like the way these guys are playing."

"Go for it Buddy."

Then I turned to the computer. Figured I'd check in on some blogs. That's when I came across this post.

And caught a breath.

What? Adam Morrison. The star player for Gonzaga. Hailed as possibly "the next Larry Bird."

That alone would be enough. But then...

He has Type 1 Diabetes.

And this young man has had it since he was 14.

The Madness had most certainly taken hold.

And when I shared Morrison's story with Joseph as we watched Gonzaga beat Indiana, he smiled at the fact that both he and this basketball star enjoyed reading, and wore their hair a bit long.

I now had a team (and a player) for whom I could really cheer.

And Joseph? Well, he already had the Madness. But now he had yet another reason to believe he could accomplish anything.

He also had the desire to go outside and shoot hoops.

Something Cool

So how exactly does one attempt to pull oneself out of a funk?

Strategy #1:

Seek the support of those who understand exactly what you're going through.

Check.

And thank you.

Strategy #2:

Do something really cool with your kids during your son's "spring" break.

Well, a trip out of town just wasn't a good option (aside from the whole paying for said trip, it's snowing like bejeezus outside).

There was always indoor mini-golf, bowling, games of chess, checkers...

Fun? Yes, absolutely.

But-- Really Cool?

Uh... no.

We had to do something, because I did not want the visit with the endo to be the highlight of Joseph's vacation. Sure, we spent the rest of that afternoon at a bookstore.

But come on.

Soooo, here's what I came up with:

Take the kids to a local bar to see a rock concert (now that's something we've never done before).

At 11:30 in the morning.

Some might wonder who would play at a small club at such an early hour.

And really, who would Evan enjoy seeing (besides the Wiggles)?

Heck, who would Joseph like to see at his very first rock concert (besides Green Day or The All American Rejects or Fallout Boy)?

Bo Bice, that's who.



All right. Yes, I admit it. I watch that damn TV show.

For the last two seasons I've been totally sucked in. Though never satisfied with who "America" picks.

Yeah, I wanted Bo to win it. Probably best he didn't though, because then he'd likely never play a venue as small as the one we visited today.

Of course, the kids love the show. You should see Evan cheering on her favorites (Bo last year, this year it's Chris-- man, she just loves those rockers).

Anyhow, the kids were ecstatic when I proposed the outing. And happily, the bar was only 15 minutes from our house, thus the journey through all that snow was not bad at all.

The only tough part was wondering if we'd get in.

Waiting in the bar's vestibule, hoping to be lucky enough to get a seat inside.



And yes, we were very lucky-- bar stools above the dance floor less than 30 feet from center stage. How cool is that?



(Note the "cheese curds" on the "Bo Bice Lunch Menu"-- a nice Wisconsin touch. And no, we did not partake.)



So, how was Mr. Bice?

Well, the man was all right (she types with a smile). Just a really fun show. A very tight band. And yes, this guy can sing.



I only wish I could have gotten snaps of the kids rockin' out, but I was too busy rockin' out right along with them...

I ask you, does it get any better than a wad of gum and your first concert t-shirt?



Postscript: To the many Bo Bice Fans who've found this entry.

Thought ya'll might like to know that fame has not gone to the man's head.

Before the show yesterday, in the midst of a snowstorm, Mr. Bice stepped off his tour bus (wearing a short leather jacket and a knit hat) with his dog, and traipsed across the club's snow-covered parking lot.

For several minutes he stood out there, just waiting for his dog to do his business.

Didn't send a roadie to do the job. Did it himself.

Year Two

Yesterday was the one-year anniversary of this blog.

It was such a busy day, what with Joseph home for spring break (weird, because you know, it's not even spring yet... and we're expecting a snow storm here tonight... sigh). And Evan has been sick with a fever and a nasty, wet cough since Sunday night.

You get the picture. The day went by, and here I am this afternoon, posting my first entry for Year Two.

Wow.

So, where to begin?

How about if I give you the low-down on Monday's endo appointment?

We arrived for Joseph's visit exactly on time-- an amazing feat given our more typical difficulty just getting out of the house. Despite Evan's reluctance to leave the warm couch, and the warm glow of the television-- PBS Kids beckoning -- we made it out the door in record time.

And, before we could take a seat in the waiting room, a nurse with long gray hair, a broad smile, large clipboard in hand, called out:

"Joseph?"

"Yes."

"Don't sit down."

Immediately, she brought us to the "pre-" examining room. The room where his finger is pricked for the A1c. The room where height, weight, and blood pressure measurements are taken. Where I'm always craning to see the numbers on the scale. Only to be frustrated by those damn kilograms; I can never figure out the conversion.

Too nervous, I guess.

Then, off to the examining room. Where we waited for nearly 45 minutes.

Given last month's visit, you can understand my anxiety as we sat there-- Joseph reading Eragon; Evan insisting that I help her come up with names for the characters in her latest story.

And all the time, my mind racing.

I just couldn't relax. Because, despite knowing that all of those extra tests his endo ordered last time came back negative, I was afraid that again, he might not have grown.

That really, I was screwing up here. Because the only other explanation for a failure to thrive would be poor blood sugar control.

Well, I needn't have worried.

The very first thing Joseph's doctor said when she walked in (smiling, mind you), was:

"Wonderful to see you all again. Joseph's growth is beautiful, just beautiful. He's between the 50th and 75th percentile in weight and about 75th percentile in height. Back on his normal curve. "

Upon hearing these wonderful, wonderful words, a tremendous wave of relief swept over me.

Until, that is, I remembered the A1c.

"Well, it's gone up slightly-- from 7.3 to 7.5. After looking at his logs, I think an increase in his basal rate from 8 am to 10 am should smooth out that spike he seems to experience between 10 and 11 am. That should help bring his A1c down to 7, which is really our target for high school kids. Joseph is actually right where we want him to be for elementary kids."

Hmmm.

"Well," I began, "I'm not sure that changing the basal rate during those hours is such a good idea." Then I pulled out the logs, flipping to the Saturday and Sunday entries.

"If you look here, there's no spike on the weekends-- when Joseph sleeps in. His bg stays steady, in the low 100s, all the way until as late as 11am. If we increase the basal in the morning, he's bound to go low."

The doc agreed.

Instead, we're going to give him more insulin for his breakfast bolus, and actually lower his basal between 10 and noon (to try to prevent the lows he's experienced when we've increased his food boluses in the past). We'll see...

So, it's all pretty good.

But still, I'm exhausted. Thinking about the never-ending bg checks, site changes, endo visits.

The endless worrying.

I'm just in a funk about all of it right now.

Maybe it's because we're seven months into Year Two with diabetes, and I'm surprised by the fact that our ability to integrate this condition so well into our lives makes me both proud and more than a little sad.

Maybe because I'm still fighting this new reality of ours.

Maybe because really, I just can't accept it.

A Lighter Note

Have you ever had one of those days when you were feeling really overwhelmed, and then (as if by magic) something happened that made you just shake your head and laugh?



Just yesterday I found my three-year old daughter sitting on the floor making several small objects "talk" and act out a story she had created.

She was so animated, using different voices for each character, that I just had to bend down for a closer look.

One of the characters was a used test strip.

"Honey, what are you doing with that?" I asked, slightly taken aback.

"Mommy, this is the little boy," she said, holding out the test strip in her cupped right hand, "He's lost and he's trying to find his mommy."

"But honey, that's not really a little boy."

Some eye rolling, and then "I know, this is Joseph's test strip for his blood sugar. But he's all done with it. So I'm using it now."

Thus, in the interest of family harmony (both real and imagined), the "little boy" was allowed to reunite with his "mommy" (a piece of blue chalk).

And I'm still laughing, and shaking my head.

Already Lost?

Spoiler alert: If you're looking for uplifting, this isn't the post...

Last week, I stumbled on a blog by a talented, intelligent writer.

A wife.

A mother of a child with a genetic syndrome.

A "tax-sucking civil servant leach" (her description, not mine).

A Canadian.

A woman who has had Type 1 diabetes for 13 years.

Though her blog has almost nothing to do with diabetes, I haven't been able to stop thinking about it. About her outlook on the disease:

That is the worst part of being diabetic, at least in the stage I'm in (what I sometimes refer to as "pre-disabled," since something like 90% of type 1s will eventually have complications). That you do everything right, you measure and say no and count and shoot and test and record, and it just doesn't work. That this "manageable" disease, this disease that can be "controlled," will not be controlled after all, no matter how hard you work. Like that woman I knew when I was pregnant, who despite excellent blood sugar control, still almost went blind while she was pregnant.

And on the effectiveness of an insulin pump:

At least having a pump is like having a slightly better weapon and a get-away car; I still know I'm going to lose someday, but hopefully a bit farther off and with less effort in the meantime.

But in some ways, I am already losing, and I know it.

I can't get this out of my head. I look at my son, and the thought that we've already lost.... yes, I know this is just one person's thoughts, but still.

Are we simply winning battles here, with no hope (short of a cure) of winning the war?

He's my child, and I cannot stop thinking about these words.



We can't be losing. We just can't.