Sunday, September 03, 2006

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.

12 comments:

Nicole P said...

Tabs all around. Thank you - and Joseph - for keeping a little glimmer of hope alive in me. - Sending you both hugs.

art-sweet said...

Sandra -

I never commented on the previous post because I couldn't find the right words. I still can't but I'll try.

When I was Joseph's age, I wish I had known people who had had this disease for years and still led productive, fulfilling, satisfying lives so that I knew it was possible.

I wish I had known that my life as an adult could be so full and wonderful, even with diabetes, that I'm not sure I would trade it in for a non-diabetic life if it meant giving up what I have now. (If I could keep everything and jettison the diabetes, of course I would).

I wish my parents had focused less on controlling the variables of my diabetes control and more on the fact that one of those variables was a ten-year old girl who wanted to be normal.

And yes, I wish no one had promised me a cure in five years. Because, as I'm sure you've told Joseph at some point in his life, you shouldn't make promises you can't keep. Promise that you'll work for one. Promise that his life will still be wonderful even if there isn't one - because it will. Promise that you'll let him stuff his face and guesstimate the carbs every once in a while so he feels like everyone else - if it means he can keep up the hard work the rest of the time.

But don't promise him a cure.

much love,

art-sweet

Beanie Baby said...

art-sweet is wise. The only diabetics I knew as a kid were my grandparents, both type 2, both products of the one-shot-a-day regime, both of who died painfully. It was and is traumatic to have those as my two main diabetic role models. (I'm glad to be able to at least get to know others now.)

If there's one thing I've learned from this motherhood gig, it's that there are a thousand different ways to do it right, as long as you love your kids. It's obvious you love Joseph and that you're doing everything you do to give him the best shot possible, and that's the most important thing, I really believe that. It's true that being promised a cure in ten years was, for me, much worse than being told to get used to it. But that's me. I'm not Joseph. And you are in the unenviable position of trying to decide what's best for him; I won't second-guess your decisions.

What Joseph has that I never did is two parents who love him and who are committed to working on this with him. No matter how you tackle this cure thing, that's a huge advantage. He's a lucky kid.

Sandra Miller said...

Nicole-

We'll gladly take those hugs.

Art-Sweet-

Some days I have to believe a cure will come if I'm going to make it through.

And while telling my son that a cure might not happen cuts deep, I want him to be prepared for that possibility.

Problem is I need to be better prepared for that possibility myself, I think, if I ever hope to help him.

One thing I am sure of is that Joseph will have a full and wonderful life-- with or without diabetes.

If I had any doubts before, connecting with all of you amazing people has made me sure of it.

And yes, you did find the right words-- thank you so much for sharing them here.

Beanie baby-

Ah, so many tears for a Monday morning.

Frances is a very lucky girl.

Vivian said...

Sandra,
We will, all of us together, work very hard to make that cure happen. Please, as hard as I know it is, remember that you are not alone. Not for one moment.
If, heaven forbid, a cure does not come...we will, all of together, support each other with whatever complications may arise and will continue to "atta boy" all of the wonderful accomplishments that come along as well.
Big Hugs and Lotsa Love
Vivian

maryellen said...

I have bben thinking of you and Joseph since last week. The blog helped me face some demons of my own. I worry. About Tom's future, about what all those 'highs' are doing to his little body, if he will ever be able to take care of himself and his diabetes care; I worry about others giving him insulin.

Do you worry about Joseph when he is in school?

Anonymous said...

I shall blaspheme and declare my belief that there will never be a cure. The pharmaseutical(sp?)industry can't and won't allow it. But the $ we raise for a cure will advance technology to produce tighter, easier control and less complications. I've stopped the "until a cure dance" and when my daughter with diabetes mentions it, I hmmmmmmmm, we'll see. and I'm sad, too.

Shannon said...

After reading Art's comment, I finally get where she and other PWD's are coming from.

I do still hope for a cure, but when Brendon asks if there will ever be a cure, I am careful to just tell him that I HOPE there will be one. I don't want to promise him something that I'm not sure will ever happen in his lifetime.

At the same time, I do strongly believe that a cure will happen...I just don't know when.

So in the meantime, the best I can do for Brendon is to integrate optimal management with a "normal" lifestyle. Letting him be as carefree as possible is the best I can do short of a cure :)

Sandra Miller said...

Vivian-

Thanks so much for those very comforting words-- many hugs and lots of love to you, too.

Maryellen-

Funny you should say that my previous post helped you "face some demons." Writing that entry and reading all of the responses to it did exactly the same for me.

And yes, I do worry about Joseph at school-- but not nearly as much as I used to. We've got a good relationship with the nurses there, and Joseph has just gotten so darn good at troubleshooting when bgs are funky.

It also helps that his teacher this year had gestational diabetes (so she knows the significance of those highs and lows) and the student teacher in his classroom has a 4-year old nephew with type 1.

And, I met these two teachers last week and really just like them.

Now, Joseph does still call me at lunch time for a "bolus consult" and during the day if he's having a low. And usually we do exactly what he suggests-- I just want him to always know I'm here if he needs me.

Quite frankly, I'm far more anxious right now thinking about next year when he starts middle school-- new school, teachers, nurses...

Anon-

Not blasphemous in the least. A nagging fear for me is that the frighteningly powerful pharmaceutical industry will somehow suppress a cure-- but I can't stop hoping (and sometimes, really believing) that there are enough of us out there to stop them from succeeding.

Shannon-

I absolutely agree-- we need to let our children be kids, first and foremost.

There are times when we let Joseph "stuff his face and guesstimate the carbs" (as Art-Sweet mentions above) -- probably a bit more often than we should.

And "Gramma cookies" are not off limits-- they're just not the best choice when it's late and his bgs are running high.

And finally, just this Wednesday, my boy did get to go to the pool with his buddy, Zack and his family.

Basal testing prevented him from accepting the invitation that prompted the previous post (we had to test that day as camp was less than a week away; he had brand new basal rates that were causing some scary lows prior to our testing and adjusting; and he had other activities the remainder of the week that made basal testing another day impossible).

Thankfully, this kind of testing is rare for him.

So how did this outing go?

Well, his set came out just an hour into his time at the pool.

But he had plenty of insulin on board; checked himself every hour; checked out many girls in bikinis; built castles in a giant sand pit; and dove into the deep end of the pool.

All without me.

His bg when he came home-- 143.

Even if it had been 300, the day would have been worth it.

MileMasterSarah said...

There is life with diabetes. I would love for their to be a cure, but life with diabetes can be wonderful....I can imagine how hard it would be to get your mind around though, as you are just embarking on this life. For everyone, I hope there is a cure, and I think you are doing fabulously with your son, and he is doing fabulously as well! Thanks for your wonderful look into your life!

Shannon said...

Oh yes, diabetes certainly gets in the way of being carefree at times. No way to get around that especially when testing basal rates.

In Search Of Balance said...

Hope is a wonderful, essential, breathtaking privilege, and as a new diabetic (3+years), I know how important it is. It keeps us going, provides momentum for change and advancement. I love that you and Joseph are so positive, and I love that you both are looking forward.

I look forward as well, and I am very hopeful. But I also remind myself every day that my life is now, and I am diabetic, and in order to live fully, I must embrace that, as well.

Best wishes to you and your son,
Beth