Friday, August 25, 2006

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 . . . "

27 comments:

Kerri. said...

Bears. Sharks. Airplanes. That sound that balloons make when they pop.

I list what I’m scared of in my bio. There’s a comical element to being afraid of bears.



But deep, deep in the darkest corners of my heart, my real fears are tucked neatly in the shadows. Reading about plans to down a few bottles of glucose tabs and then chase it with regular soda … something about that made me burst into tears. I said those same words myself when I was seven.

I remember having a similar conversation with my mother when I was a very little kid. Five more years… and then five turned into ten. Ten into Fifteen. And on the 11th of next month, it will be Twenty.

Twenty years.

A childhood without diabetes. Adolescence without diabetes. College without diabetes. Adult life without diabetes. I wanted it just as badly as Joseph. I have never known anything without diabetes.

I wish I could say that I launch my message of hope from the rooftops, but I can’t. I have a wonderful life, a supportive circle of friends, a fantastic family, and a man who loves me. I am fulfilled by my job and I love my stupid cats and I even don’t mind my constantly broken Jetta. I am living with diabetes. It makes my heart ache too much to anticipate otherwise. I can’t plan on a pregnancy without diabetes. I fully intend to fold my pump into my wedding dress.

I don’t plan on a cure. I do what I can to support my fellow diabetics, through the blogs and emails and dLife and writing and everything else. I want to contribute to the betterment of the lives of people who have diabetes.

But that hope… that hope I used to have as a child, I keep that close against the fear in my heart. That cold place that I’m afraid to acknowledge because it makes me just so damn sad. That there won’t be a cure.

My biggest hope now is that I’m wrong. Oh please let me be wrong.

Beanie Baby said...

I don't know.

I know how you feel, I know how JOseph feels--but--I am still angry at the doctors who told me I'd be cured in five years. ANGRY. Like Kerri, I can't think about a cure. It's too hard.

I don't know how I would have felt about this at his age. I do know that when I turned 22 and had it for five years, I felt furious and betrayed. How dare they tell me I was going to be cured? They didn't know that. No one knows when it's going to happen.

I know you love him and you want to spare him pain. I don't know him. All I can say is, it didn't spare me any pain to be told I was going to be cured. In the short term, yes; in the long term, I think it just made it worse.

Shannon said...

The most painful part of dealing with my child's diabetes is to physically hear his thoughts on how he feels about his diabetes.

The current findings of Dr's Faustman and Nadler only cause me to believe that a cure is possible. It's right at the tips of their fingers.

This wasn't so 10+ yrs ago.

Times have changed.

Val said...

I too feel that they seem a lot closer to a real cure now than in the past. So I try to live day to day like there will never be one, and don't set a limit like "in ten years", but maintain the secret hope/conviction that I won't be dealing with keeping my basal rates adjusted in the nursing home. (Having been lucky enough not to deal with it as a child, adolescent, bride or expectant mother).

Maybe you and Joseph could set up an annual "holiday" where you let him have the hard-to-guess cookies and sugar soda and all? I mean, you'd still try to get the insulin right and all, but just figure that one or two days a year in the grand scheme of things may be worth it for the non-physical advantages. It would depend, of course on what you are comfortable with. I have found on the days when I say "My BG has been crappy all day anyway, I'm at a wedding and I'm just going to eat whatever I want and make wild guesses as to the carbs," things tend to go a lot smoother than some of the days where I'm really trying.

And who knows, maybe you'll figure out how may carbs in Grandma's cookies.

Jennifer said...

Wow, am I glad that both of my girls are at school right now because I just sat here with tears streaming down my face. Your post and the comments really hit home.

I have to believe that there will be a cure in my daughter's life time - she's only 7 for goodness sake. But yet I know that many people, for many, many years have been waiting for that cure. When my daughter was diagnosed a year ago, the nurses said they truly believed that there would be a cure in my daughter's lifetime. They said they didn't necessarily feel that they would live to see the cure, but that it's coming. Sometime. My daughter and I have talked about this. She knows that there are people out there working everyday trying to figure it out and that hopefully someday she'll be able to say "I used to have diabetes..."

I have to believe. I have to.

Nicole P said...

God damn this disease. How much does it suck for a kid Joseph's age to have to know that - in spite of being able to do most things as well as, if not better than everyone else - there are some things he CAN'T do if he wants to get the very best control of his disease?

And how strong is your child to maintain hope against odds that surely, at his age, he's coming to understand.

I wish I could be as hopeful, and as confident in my belief about a cure as Joseph is.

Twenty-five years into this disease, with no major complications - I have faith that I'm doing most things right - but I'm still not convinced that a cure will happen in my lifetime. And that makes me angrier than anything else in my life.

Sandra, when you have that party with the tabs and the soda - I hope I'll be around to come (and I hope you'll invite me). If I'm not, though, I'd appreciate your having a tab and some soda for me. :)

Scott K. Johnson said...

Oy. What do I say.

These emotions are, I think, normal for you both to have. That doesn't make them any easier to deal with.

There is a lot happening with diabetes - but I think there is an unfair emphasis on TOOLS for trying to MANAGE things, rather than a cure.

However, there are a lot of people working on a cure, and I really do believe that one day someone will succeed.

Just think, 85 years ago we would all be dead, or starving to death, because there was no insulin. Diabetes is still a relatively young disease.

20 years ago I was trying to make therapy adjustments based on glucose levels in my urine. How one can possibly make any adjustments on inaccurate and outdated (hours old) information, is beyond me. But, here I am!

And for a long time, not much more was really even investigated. Everyone was pretty happy and content with having insulin to treat the condition.

That picture is changing rapidly though. People are seeing that insulin, while a great tool, is just a band-aid - it's not the cure. Those same people are digging into the problem. It's only a matter of time before something big happens.

I am excited too about the next stage of management we are about to enter, with the continuous sensors. That will be a big step.

I guess what I'm saying, is that until a cure is found, however long that may take, we enjoy the tools that make our lives easier, and put up with the (many) things that make our lives difficult.

Realistically, I do believe in a cure, sometime. But us long timers are all a bit jaded because we have all been told "another 5 years" for a very long time. Much longer than those 5 years.

Maybe it would be best to not even mention a time frame? Realistic expectations and all that stuff.

Felix Kasza said...

There actually is a cure -- a pancreas transplant. It's just that the _cost_ (_major_ surgery, immunosuppression and all its nasty side effects) is so high.

I, for one, do not believe that a cure without immunosuppressants is even on the horizon.

In the next 15 or 20 years, we _may_ be able to prevent DM1 from developing; we _may_ even find ways to nip the auto-immune reaction while there are still enough beta-cells left to suffice.

But a cure for those of us who have C-peptide values of 0.0? Not in my lifetime. And I hope to live yet another 41 years.

Sorry,
Felix.

Shannon said...

I think Scott brought up a good point. Diabetes is a relatively young disease as far as advancements go.

It takes decades for things to change and changes have been made relatively rapidly in the scheme of things.

How long did it take to find the cure for the black plague, polio, etc...hundreds of years.

We're a microwave society...we want every done seconds ago (I include myself in that comment).

Anonymous said...

I'm sorry for such a painful day.

Going out on a limb though, I think his going to the pool that day was far more important than trying to figure out the basals for camp.

I am jaded, I don't necessarily think there will be a cure anytime soon. Instead, we try to focus on making life as comfortable as possible with the diabetes today, while we raise money and awareness for a need to cure diabetes.

Francine

Sarah said...

Yet again, I'm in tears and amazement at what an old soul Joseph is. He has a maturity far beyond my almost 30 yrs.

I'm crying because I don't think I've ever allowed myself to think about a cure. I didn't believe it 13 yrs ago and I still don't. Maybe because I was dx'd at close to 17. Maybe I had already lost theh blind conviction of childhood. I wish I could find it.

Jamie said...

My heart broke reading this post.

A lot of people who have already commented have said what I want to say. I have to believe there will be a cure one day, but will there be?? Should we get our hopes up? Are we doing it all for nothing? What do we say to our kids? What do I say to my daughter when she's old enough to ask me if there will be a cure? I don't even know what I'll say .... I want to say YES - YES, YES, YES there WILL be a cure and one day you will no longer have to live with this disease! ... but would I be setting her up for disappointment??

I really, really hate this disease.

Andrea said...

Sandra, wow, I wouldn't even know what to say to a child in Joseph's position. I mean, how do you respond to a child who can't bear the thought of growing up and becomingan adult with Diabetes? I think honesty is important, but I think it's also important to remember that there is always hope...

I have to echo what others have said. I truly hate this disease- I feel that it has taken a lot of the carefree nature that life can have, at times, away and, for me, has only added additional stress and frustration.


What makes me feel even worse is knowing that kids, like Joseph, have to deal with this all. Childhood shouldn't be a time to worry about a chronic health condition of any kind. It definitely saddens me to know that many children have to struggle with it.

But I think that in many ways, it makes us stronger. Dealing with a chronic disease that requires so much self- management and monitoring I think it forces us to be more responsible for our actions, etc...

Anyway, I know it's heartbreaking to have to have that conversation... but it does sound like you handled it well... And with a little hope (ok, a lot of hope) maybe one day we can say good-bye to this disease for good.

Best wishes.

Penny said...

Oh my, that post got to me.

Riley tells me that when he's cured he's going to eat all the sugar he wants.

He's sure he's going to be cured. And, because of that, so am I.
I couldn't stand to live any other way.

I hope that Joseph will keep this outlook and not get discouraged if the cure doesn't come as soon as he thinks. And, I hope that cure comes sooner than he expects.

Sandra Miller said...

Wow.

It's taken me until now to even attempt to answer your comments.

Broke down too many times.

Kerri-

The thought of this never going away is really what frightens me most.

Sometimes it paralyzes me.

When I look at my son (or imagine the seven-year-old Kerri you describe here), I feel deeply that this is not a fear a child should have to live with every day.

It's just too much.

But I know that the challenges of this disease will make a child strong enough to face that fear-- to live with it -- when they're older.

As you demonstrate every day.

Beanie Baby-

God, I know.

Sometimes, when I tell Joseph the things I told him in this post, I truly believe the words.

In fact, I feel guilty for having doubted them.

Other times, it feels like I'm hiding something from him.

Something awful.

And even during those times-- for now -- I still believe I'm doing the right thing.

Because what if they do cure the thing?

And if he never believed they would, how much of his childhood would he have wasted fearing (or worse, dreading) a future living with a disease which frustrates, angers and at times, frightens him?

All on its own.

Would it make things any easier for him in the long run, if he has no hope as a child?

If he has to struggle with the disease so young-- right alongside the pain of knowing that it's never going away?

I don't know.

But I think I'm going to have to continue responding to comments a little later today.

Summer said...

Oh, I cried when I read this post because I feel his pain. I was diagnosed when I was 6 (which I think is easier than being diagnosed in the teens)and still have those feelings 25 years later. I am sorry for you both, but over the years I realize that when a new major diabetes "product" is announced, it usually takes at least 10 or more years to actually come to fruition-if at all. My suggestion is to help him deal with diabetes being a lifelong disease. Until you both do that, it kind of seems as though you might be in denial. I do not mean to sound harsh or sour, but denial comes in all forms and lengths of time. Again I am sorry for you and your family and hope everything works out for the best.

Allison said...

Sandra,

I had to write an entire post in response to what you wrote. It was initially inspired by something that another girl wrote, then again by Scott, and it was finally all tied together by your son.

I hope it bring some comfort to both you and Joseph.

J said...

WOW tear jerker here, I had conversations like this with my mom and I Threw needles and got mad and ate candy in front of them just to make them feel bad cuz of this damn deseases looking back on it I did not mean to hurt them.. Mom held me too when we both watched on TV that there was going to be a cure in 10 years that would make me 20 oh how I could not wait to be 20 ... I do think they are closer than ever though now. I feel joseph's heart aching and hoping that evertime he says there is a cure it will happen oh how I hope there is ... hugs to him and you thru these trying times wow I am at a loss for words

Kelsey said...

Sandra,

Man, this sucks!

As I've blogged about before, I have always thought of my diabetes as a permanent thing. Maybe it's my defense mechanism, not wanting to get my hopes up, I don't know.

The cure has always been this mysterious concept to me. I've chosen to think of it as a bonus to my life, not something I need to live a full and content life.

It's daunting to think of FOREVER with diabetes. However, diabetes today looks very different than 10 years ago and completely different than 20 or 30 years ago. When Joseph is an adult, even if there's not a cure, the management will be a lot better. Our tools will be much better.

I agree with Scott that the focus on tools instead of a cure is unfortunate. However, I'll take some better tools over nothing at all. (There's an irony that I'm saying this while still doing MDI... but that could be changing!)

You're doing an awesome job supporting your son and helping him live a healthy and full life. I think "the cure" will change in his own mind as the years go by. I think your balance of hope and realism is very appropriate at this stage.

Take care!!

mary ellen said...

I don't know you, of course, but I feel closer to you and your situation to most people with whom I have daily contact.
What a great son you have.
I have one too.
My son is 5 and he told me the other day that wen he grows up he wants to be a scientist so he can get the cure for diabetes.
Wouldn't that be something.

Gina said...

Sandra,

You are so strong for your son, I really admire you. I cry with my mom about the same things and I am 30. We all feel helpless at one time or another and we all wish for that cure, and I dont know if I would down glucose tablets with soda, but I would eat a chocolate chocolate chip muffin and down it with a nestle chocolate quick hahaha...
You are the best mom ever!

Nichole Tautz said...

Dear Sandra:
WOW - Your story made me tear up! I have Sawyer, our son who is 12 years old and was diagnosed 2-15-06. I have LIVED your experience. Thank you for sharing it!! THANK YOU!
I have been looking for a site like this. I've bookmarked your blog page. Thanks you!! He has just been approved for a pump and we're all thrilled. Blessings to you
Nichole - Denver, CO

MileMasterSarah said...

Wow. I can’t believe that this post actually brought tears to my eyes. I was dx’d at age 13, and I can’t say that I have ever believed or even considered that there might be a cure one day. It is like I accepted from day one that diabetes is my new reality and always would be. When I read this, I felt like I missed the bus on that hope……I felt like Ive been missing out on something great. It would be nice to see a cure that can help and heal all of us soon…..and maybe it is the believers like you and your son that are going to help make that happen….

Estelle said...

Oh Joseph... what a kid you have there. I think I may be the only non diabetic person without a diabetic child that reads your blog. I don't know where I found it, but I started reading back a bit before he went off to camp this time. I've just never commented before.
Diabetes sucks.
I have a high health needs child too, imagining him living his life like that is scary. But it's become part of our reality, and part of his. He doesn't know any better.
Hopefully one day, being sick won't be normal for any child.

Jenny said...

Wow. I'm a little weepy over here now.

Thank you so much for sharing this!

In Search Of Balance said...

Thank you for sharing your story. I hope Joseph will know the day when he "used to have" diabetes.

L Stinnett said...

Well like many others have said, this story hit home. My daughter, now 5, was dx at 19 months. She doesn't remember a time without diabetes. But she is now becoming aware of what it all implies and it is so heartbreaking. I used to be the only one (or so I thought) to have those quiet little cries at night. The times when I thanked god, or whoever, for keeping my child safe another day and being truly thankful yet so afraid and sad. Diabetes came into our world on the heels of her new life and it is beyond words to think (admit?) that it may always be. So, yes we have hope. Then there was the other night when she asked if she would die from too much sugar is she ever snuck a cookie? Another night of not so silent tears. I hate this disease.

Laura