Thursday, March 31, 2011

The ONLY Day-In-The-Life He Knows

It is 3:30 am.

I am up.

I am up for the day.

Sometimes my urge to write something down is so strong that I cannot go back to sleep after the 3am blood sugar check. This occurrence is relatively frequent, hence the "diarrhea" of my fingers.

The posted photo...the one that looks like a "great-now-I-gotta-make-up-the-grams-of-that-jelly-smeared-all-over-his-face" photo was what had me up and shuffling through a heap of old pictures that I have shoved half-haphazardly in a box. It is perfect for today's post on so many levels. It was taken "pre-diabetes", so no worries on the "carb-making-up". It was toast and jelly; the same thing Joe was munching on yesterday when he stated without emotion ... when he stated, matter-of-factly, that he hated diabetes. He continued on, void of emotion, that he hated everything about it. This picture represents a time before "D". Joe was two. Joe does not remember this picture. Joe does not remember a life where that jelly would not have to be "made-up" for in carb grams.

I help organize our JDRF Walk Kick-Off Luncheon each year.

This year, during the luncheon, we are going to be sharing how our "stories" are powerful tools in raising awareness about type 1 diabetes and ultimately, through the telling of our stories, the importance of a less laborious and rigorous treatment regimen and the need for a cure will be appreciated by the general public.

I asked Joe if he would like to talk at the luncheon about his life with diabetes.

His answer was, "What would I say? ..... I don't know what it is like."

I followed up with, "What do you mean Joe? How do you not know what living with diabetes is like? You have had it for four and a half years..."


"Mom, I know no different..."


*my spawn is "deep"*

My response was something like, "So, you don't feel like you can talk about life with diabetes because you don't know how it differs from a life without diabetes ... you don't remember what it is like to not have it?"

"Yes, exactly..." in a lightly kissed, lisp-y, nasally Joe voice.

Well, fuck-stix. (Is that a sentence? noun (x), finite verb (x) complete thought (x)).

I have thought about this very topic over the years. At diagnosis, people were even so bold as to state "... blah...blah...blahbitty...blah.... at least he will know no different". Yes, true. He won't...He knows no different. He does not know what it is like to sit down with a box of crackers or a sleeve of cookies. He does not know what it is like to eat a meal without piercing his finger with a needle beforehand. He does not know what it is like to play a sport without frequent blood sugar monitoring. He does not know what it is like to not fear a low. The list is infinite. The list is life-encompassing. The list is somewhat sad.

Not sure how I feel about all of this... yet.

A day-in-the-life of knowing nothing else for his day-in-the-life.


Penny said...

Ugh. I am sorry Reyna. Maybe he can just talk about his life, as it is. It stinks that our children grow up before their time.

Sandy said...

That is exactly how my hubby is. He has no idea what a non diabetic life is like. If it makes you feel better, it is probably a good thing. My hubby is glad it happened that was because he never has to think, "I miss not having this" he fully accepts it because he knows nothing different. You have one deep little guy over there :)

meanderings said...

Such a wise young man... I think I'd be awake at 3am, too...

Scully said...

It's hard to say which one is better. Being diagnosed without ever knowing any different or being diagnosed old enough to remember. No matter which way you slice it, it all sucks. I am bitter because I remember life before. Joe may be bitter because he never got to experience life without it.
it all really sucks :(

Fiona said...

Both situations rate very high on the suck-0-meter.

Fae-Mom said...

Ugh. My son was diagnosed when he was 12 months old. I still hear the "he doesn't know any different" speech. While this is true, he certainly notices that other children don't live this life. I have to confess that I use the sentence once in a while. When somebody has nothing better to ask than, "How does he handle having diabetes?" I respond with, "It's all he knows. It's part of him so he just deals with it."

tara said...

Wow!! That kid is a thinker. He really does give some serious thought to things. I imagine him just standing up there and saying I can't tell you what this is like because I know no different would bring the room to tears and have a powerful impact. This disease is horrible, I hate it for him and for you and for your whole family. On one bright note, I think the work you are doing with this blog to raise awareness...well it is nothing short or extrodinary. YOU MAKE A DIFFERENCE!

Cindy said...

Big, big hugs, Reyna! For you and for Joe. That picture of him is the cutest thing ever. Adorable! Joe is an amazing kid and when he grows up, I think he's going to be one fantastic human being!

Shannon@ The New Normal Life said...

Okay girl you needed to post a disclaimer about needing a tissue your post left me balling like a baby this am. Joshua as you know was only 11 months and people say all the time at least he wont know any different and I think to my self how horriable that is. he will always know what it feels like to be different to be worried to be older then he really is. Sorry dont mean to go off on a tangent but it really hits close. I AM SO sorry Joe had a hard time with that. if I can offer any encouragement to him it is that people like Joshua need people like Joe. We need him to tell his story about how life wiht D doesnt hold him back. How he is a great sports player and while he may be different then the other kids he can do the same things. his story is powerful and amazing and I hope you will tell him there is a little 2 year old in VA who will be looking up to him!!!

Julie said...

I love that you two can talk about D so much. I mean, beyond the logistics, but the emotions behind it.

Heidi =) said...

Your post gave me a lump in my throat and then Shannon's comment made the tears fall. Joe is an amazing kid, with an amazing mama! ((hugs)) to you both.

sysy said...

Oh my he IS deep...:)

My sister feels like that since she got it at 3...she doesn't talk about it much but I can tell it bums her out to not have experienced much of life without diabetes. I tell her about what she was like before diabetes and she's like, "hey that's how I am now". Of course, she doesn't know what the living without it is like...but I guess there was this fear about it having changed her or something. There was a sense of relief in her to find out she acted the same.

This just popped in my head Reyna, and you've got the right sennse of humor to take it...I know what life without diabetes is like...BUT...having been diagnosed at 11, I do wonder what sex with my hubby would be like without diabetes. Hmm. lol.

Jen said...

I am always thinking about that. Whenever those words come out of my mouth "at least he won't know anything different" just does not seem comforting somehow! What Scully said about sums it up..either way you slice it..D sucks!

Hallie Addington said...

Wow. I'm impressed at his being able ton express that.

I've posted about it before. She knows no different. She does not remember life before. Is that better? Maybe. But I think it's sad, too. Sad that she doesn't know. Sad that this is her life. I try not to be sad... But sometimes I just am.

Joanne said...

Sigh... tears here too. I hate the "not knowing anything different" comment too and haven't yet come up with THE perfect snarky reply.

Sarah said...

darn you Reyna for making me cry this early in the AM. damn it diabetes sucks the big fat turd.
I know this horrid statement that others say and sadly every so often it gives me comfort that Isaac will just accept this as part of him rather than some teenagers whom are newly diagnosed and live in a bit of denial and refuse to test or take their insulin. Sometimes that thought just crosses my mind.
Lately Isaac's been telling me he hates his pump. "I ATE IT MAMA!" Finally he told me it's because Ethan doesn't have to have one and daddy just has shots. Where do you go from there?
These are definitely the hard parts with d - where our kids are more deeply affected than we'd hoped and they share, which we want, but there isn't a lot we can do to "fix" it.
Could you give Joe an extra fist bump from his friends here in WA?!

my sweet girl said...

Same with Skyler. She was 3 1/2 when she was diagnosed. Sometimes I am grateful that she didn't have to adjust to diabetes after living carefree. Usually it pisses me off that she has never known care free. I can cry just thinking of that! Yvette

Tracy1918 said...

Matthew told me just this week....out of the blue.... That he doesn't remember what life was like without diabetes.

What?! He was diagnosed one year ago!!

I think it is just so much for our kiddos. ...

Catheirne said...

I do a 3am blood sugar check on Rasmus too, so I will think of you when I'm up! Of course, we may be in different time zones. (I'm in MN.) Rasmus also says things like what Joe has been saying lately. Oh...this is the first time I've posted here. Thanks for writing your blog! :) ...and I got the food scale you raved about, and it's awesome!

Heidi / D-Tales said...

Two-year-old Joe was a cutie!!!

Since he's passionate about hockey, perhaps he could talk about what it's like to play competitive hockey when you're a kid with T1.

Sometimes the things our kids say just bowls me over!

Alexis Nicole said...

I am in tears. I dont know which is better.
Justice was dxed 3 days after turning 6, and he remembers life before.

He cries for it somedays. He talks about it all the time. It breaks my heart. But not to remember it seems sad too.

The whole thing is bullshit.

Hes one deep kiddo is right.

Holly said...

It is so sad that WE know about life both ways. WE know what they are missing out on, even if they don't. Maybe he could just tell what his day is like? It's certainly different from non-D! Sorry, I know it's hard, and it does suck.

Jules said...

I think Joe will be a special mentor to many. We too got that line about not knowing any better. Seriously , thats sad and true.

Karen said...

I think about this often. I was 11 when I was diagnosed so I do remember some of the before. But honestly, after 31 years with diabetes, the before has still faded away quite a bit. The thing is, though, when I think about those diagnosed as adults, I think it must be harder on them. I had my parents in it with me, sharing the burden and helping me live as normal as possible. To be an adult and suddenly have this disease dumped on you and you alone must be so overwhelming. Basically, it sucks either way, but I know Joe is okay because he has you to help him and take on as much of the burden as you can so he can enjoy his childhood. {{hugs}}