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...

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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...

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"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?"

Amazing

I've been a very bad blogger of late.

Which is kind of sad because there's been plenty of grist.

In fact, I'd love to just let loose right now.

But in this moment, I can't stop thinking about Brazil.


Earlier tonight my phone rang-- a very excited friend informed me that a piece about type 1 diabetes was on the NBC Nightly News.

I tuned in just in time to see a young girl give herself an insulin injection in the abdomen. And then we were back in the studio.

Okay.

So I turned off the TV and booted up the laptop.

And there it was.

This amazing story about 13 people with type 1 diabetes in Brazil who no longer needed to take insulin.

Nor did they need to take any other kind of medication.

How could this be?

In a nutshell, these 13 study participants received treatment to stimulate stem cell growth, had those cells extracted from their blood, and then had their immune systems essentially shut down via "several days of high-dose chemotherapy." (Thus stopping their immune system's attack on their remaining beta cells.)

Their own stem cells were then injected back into their bodies in order to "build a new healthier immune system" that would no longer attack the insulin-producing cells in their pancreas.

The length of time since each participant received the treatment varied-- as a result, some have been "cured" for several months; some for as long as three years.

Wow.

I know that it's early, and this protocol is not without risks.

But man.

A Quiet Talk

I didn't expect it to happen this soon-- I just thought that when the opportunity came along again, we'd have that talk.

So much has been written here and elsewhere -- so many sleepless nights spent thinking and worrying about it -- that I'd become more and more convinced that he needed to know.

To really understand.

I didn't want him hurt down the road.

But damn.

I didn't want to hurt him now.

On Sunday, Joseph planned to go to a neighborhood park to skateboard with his friend, Sam. Katherine (Sam's mom) visited for a few minutes, before leaving her son at our house. She sat on the couch next to Sam, and opposite Joseph.

"So I think we're all set," I said, walking into the room. "The boys'll head over to the park (4 blocks away) in about half an hour. Joseph will have his supplies and my cell phone."

"You know, Sandra, that Joseph is just soooo responsible-- he really knows how to take care of himself," Katherine says, all the time smiling and looking at Joseph.

He doesn't say anything-- just sits, head down. I know he wants to go skate, and really doesn't want to talk about this stuff now.

"I'm a nurse," Katherine continues, "and I see a lot of people with diabetes. And there are two kinds. Someday, Joseph," she says, with a knowing look, "I'll tell you about them."

"What do you mean?" Joseph asks, suddenly looking a bit interested.

"Well," she begins, "there are those like you-- who take care of themselves -- and then there are the other ones."

And now my stomach is beginning to feel a little sick, and before I can say anything, Katherine continues:

"The noncompliant ones -- ughhhh -- we don't ever want you to become one of those-- do we, Sam?"

"No, Mom," her son replies, shaking his head and looking slightly scared-- like maybe his mom had already given him the low-down on "the noncompliant ones."

Joseph looks down again.

"I think I'd better get these guys ready to go," I quickly say.

After Katherine leaves, Joseph asks me to walk to the park with him and Sam, saying:

"You can take Evan to the playground, while Sam and I skate."

"Sure, bud."

Then he goes out in the backyard and sits alone on our big, old wooden swing-- while Sam plays with Evan inside, and I run around gathering what I'll need for the outing.

When I'm finally ready to go, I look out the back window and see Joseph still out there, looking like he's deep in thought. I walk outside and take a seat next to him on the swing.

It's sunny and quiet-- with the exception of a lawn mower humming from a distant neighbor's yard.

"Are you okay, bud?"

"Yeah," he says, while looking down at the ground.

"Listen, I don't want you to get all worried about what Katherine said-- and look, I don't want you to think there's just two kinds of people with diabetes. It's a lot more complicated than that."

"Well, I won't have to worry about that when I'm cured," he says, half-heartedly.

I take a deep breath.

"Honey, I know we've talked about this. And yes, I do still believe that a cure for diabetes will happen-- it's just that . . . well, it may be a while."

I pause, to look at his face -- to see how he's doing -- then, go on:

"If we spend time assuming that you'll be cured soon -- always waiting for it to happen -- we might miss out on just living, ya' know what I mean?"

"Shut up, shut up, shut up," he says, laughing a little and plugging his ears.

I put my arm around him.

"Joseph, I'm serious."

He stops laughing.

"But Mom, I really want to be cured while I'm still a kid."

"I know-- I want that too. But we don't know when it's gonna happen . . . it might be a very long time.

And honey, I don't want to promise you it will happen soon, because" -- and this was really, really hard to tell my son -- "I can't control it."

"Yeah, I know that."

"You have diabetes, but you're also this incredible kid who can do so many things-- who is gonna do even more amazing things."

He's looking down, but still listening.

"Yes, diabetes is a part of you-- but a small part of who you are. I'm not giving up hope for a cure, but I don't want you to think: 'Once I'm cured, I can do this or that thing.' Let's just figure out how you can do "this or that thing" right now."

"Mom, I still want to eat all those glucose tabs-- even if I"m old," he says, sounding a little sad.

"Me, too."

For a moment I look away, trying to stop the tears-- to hold it together for just a few more minutes.

When I turn toward him again, Joseph's head snaps up, as if he just remembered something-- "Hey- can I go skate, now?"

Minutes later, we're walking to a park on a beautiful, sunny day-- talking the whole way about the park's "awesome ramps" and how Joseph is going to jump them.

Down (But Not Out)

Man.

This is the first moment in a week that I've been able to sit down and try to write something.

I'd like to say it's because we've been so busy that I haven't been able to carve out the time.

And that would be partly true.

But mostly, it's because it was just too hard.

The thought that my son might have to live with this thing for the rest of his life is unbearable (and probably the reason the previous post didn't make it to the blog immediately after I wrote it).

The way I cope is by trying to stay hopeful that a cure will come, but mostly by working hard to tamp down that horrible, aching fear that he won't see a cure in his lifetime.

After writing that entry -- opening this dialogue -- the tamping down has not been going well.

I just so desperately want to sit down with Joseph and Nicole -- with every last one of you -- and eat those damn tabs.

And then never, ever open another jar.

Two Big Jars of Glucose Tabs

I wrote this entry late one night during the week before Joseph went to diabetes camp.

Because I was so stressed out preoccupied at the time, it just sat on my computer until I discovered it this morning.

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"Mom, why can't I go to the pool with Zack and Michael?" Joseph cries, as we sit together at the kitchen counter.

It's hot as bejeezus outside, and telling him "no" is just making me sick.

"Honey, we need to see how these new basal rates are working-- if you go swimming you'll be disconnected from your pump. And listen bud, we've got to do this now-- before you leave for camp on Sunday."

"So, great-- I get to have fun at camp next week, but this week has to be crummy."

"Joseph, that's not true. You have had fun this week, and you'll have more the rest of the week. It's just that right now we can't have you do something that'll make it hard for us to know how your insulin doses are working."

"I hate this! I hate having diabetes! I just want to be able to go do things like everyone else."

"But you can- "

"No, Mom. I can't," he says firmly. "I'm sick of not being able to just do what I want."

He looks down at the counter, and pauses before going on.

"I'm gonna be glad when I'm grown up and don't have to do this anymore."

"But honey, you might still have diabetes."

Immediately I want to take back those awful words.

"NO! Don't say that!" he shouts-- then gasping through tears, "I can't still have diabetes when I'm grown up! I can't!"

Now he's crying hard, and I'm suddenly aware of how absolutely sure this boy is that he will be cured before he's grown.

And at the same time, I see how little faith I've had recently that this will come to pass.

I reach over and pull him close. For a while, he just cries.

I cry too.

"Joseph, I was wrong to say that," the words catch. "There will be a cure-- you're not gonna have to live with diabetes the rest of your life. I just read an article in Diabetes Forecast the other day that talked about all the reasons why there'll be a cure in the next 5-10 years. And we've talked about Denise Faustman and what she's doing.

It's just that, well, I want to keep you healthy now until that time. I know we're not always gonna be perfect, you're gonna go high, low-- heck, we're gonna make mistakes -- we're human. But honey, if you think it's okay to not do things like basal testing because a cure is coming- "

"No Mom. It's not like that. I'm not gonna be careless. I'm gonna take care of myself." He says these things with so much resolve that I feel ashamed for having implied otherwise.

"I'm sorry. The next time I say anything about there not being a cure, you just slap me upside the head, okay?"

He smiles, but we're both still shaken from this conversation.

Two nights later, we're standing in the kitchen trying to figure out what Joseph should have for a dessert. He's lobbying hard for a "Gramma cookie," but we always seem to have trouble figuring out the carbs. We finally settle on a couple of Girl Scout Lemon Cremes.

"Hey Mom-- when I'm cured, ya know what I wanna to do?"

"What's that, bud?"

"Eat two big jars of glucose tabs-- will you join me?"

"You bet, and we'll wash it down with one big 'ol bottle of soda-- sugar soda," I say, as I wrap my arms around him.

"Mom," he says looking up at me with watery eyes, "I really hope I get cured before I get out of puberty-- 'cause then I'll still be a kid and I'll really want to do that-- you know? Have all those sweets with you like that."

"I hope so too, bud. I hope so too . . . "

Trying To Keep The Faith

Just last night, as I kissed my son goodnight and turned to walk out of his room, he stopped me.

"Mom, you know there's probably gonna be a cure before I'm Hartley's age, right? I mean, before I'm in middle school, don'tcha think?"

"Well, I know they're working really hard to make that happen, honey."

"But definitely before high school," Joseph said quietly, as he pulled his comforter up to his chin.

And as he closed his eyes, he said -- almost to himself, really -- "definitely by then."

"You bet, bud," I responded, the words catching in my throat.

Closing his door, I stood in the empty hallway, and let myself imagine for just a moment:
my son in high school without diabetes.

Without the pump, the finger pricks. The highs. And God, the lows.

No more fear of potential complications.

It really is almost unthinkable.

Damn!

I wondered if suddenly I had become one of those individuals I'd met early on-- diabetics and parents of diabetics who seemed to have given up hope that a cure would come in their lifetime.

I remember telling these people, enthusiastically, of Denise Faustman, and how she'd cured Type 1 in mice. And too often, the response would be a half smile, a "well, I was told 10 years ago that a cure was just around the corner." Looks that said "just wait, you'll see, you're just so new at this."

These exchanges always left me confused, frustrated, and, well, angry.

But there I was last night, feeling my own faith slipping -- faith that a cure might be found in time for my son. I can barely type the words without choking back tears.

That was last night, though-- when my son's life seemed as if it would be an unending string of blood sugar highs and lows.... with complications always looming.

When diabetes appeared to be an unbeatable foe-- a multi-billion dollar industry that pharmaceutical companies will never willingly surrender.

Yeah, last night really sucked.

But today, I woke up and thought again of Faustman, and of the countless others who walk, climb, and ride to raise money for a cure.

And I am hopeful, yet again.

Today, I will read many posts by diabetes bloggers -- posts that will no doubt make me laugh, cry, and, as always, sit in awe of the boundless strength of these people. And I will be reminded that my son will never be alone.

That, until a cure is found, he too will persevere.