Tuesday, October 26, 2010

Hypocrite?

Before Nate was diagnosed with type 1 diabetes I knew nothing of it -
I remember my dad telling me adults have type 2 and children have type 1.  That's it - end of story.  I never gave it a second thought. Ever.

Then on September 17, 2009 Nate was diagnosed with type 1 diabetes and now I can tell you just about anything and everything you want (or do not want) to know about it. I wonder often if when I get so frustrated with my friends and family for not understanding what I go through on a daily basis if it makes me a hypocrite?

My cousin was diagnosed with type 1 diabetes 10 years ago --- he was very private about it but I never took the time to understand what he had or how to help.  I hate to admit it but I actually remember feeling frustrated with him one Christmas (I was hosting our VERY large family for Christmas day) when he asked me if I had Splenda for his tea.  What?  Hello - can't you see I'm busy here.  NO - I don't have any stupid Splenda for your tea.  Ok - hopefully he's not reading this because I'm pretty sure he never knew I felt that way.  I was a little overwhelmed by my ENTIRE family being in my house, preparing a meal (ok, an entree or two), having my kids running around and all of the usual stresses that come with the holidays.  No Excuse.  If I had known then what I know now I would have had Splenda and whatever else he needed to make things easier for him. Carb counts - heck yes! Splenda - yep!  I would have done more.

Here we are 1-year after diagnosis and I am so frustrated that people still don't get it.  Although just a few years ago I didn't get it.

I am trying to educate, advocate, share our story, and teach my friends and family.
My frustration comes when I see that now not just 1 but 2 family members have Type 1 and my family still doesn't 'get it'.

We count carbohydrates - not just occasionally but every single gram that goes in Nate's mouth.  It doesn't matter if it is "sugar free", "diabetic friendly", or "reduced sugar" -- we still count every gram of carbs that go into his mouth.  Insulin keeps Nate alive.  Insulin can kill Nate.  A high bg make his tummy hurt and makes him very grumpy.  A low bg makes him sweaty, shaky, weak and lethargic.  Nate has a very important schedule.  We still eat at around the same time every. single day.  A schedule is important (in my opinion) for any child but it is even more important for a type 1 child.  Nate doesn't get to eat whenever and whatever he wants AND there are times when he really shouldn't eat.  It's hard - it's complicated but it is our life.

All of these things are important.  They are important to me, to Jim and to our family.  These things help us keep Nate safe and healthy.  Clearly, unless you live this life you don't get it and it doesn't mean much to you.

We plan everything.  We do not expect our extended family to revolve around Nate or our family but assistance with accommodating our schedule is always appreciated.  We do not have the luxury of being all willy nilly with our plans.  Keeping our son alive is our priority.  What happens during his day directly effects what happens during his night and what happens during his night directly effects what happens during his day. It is non-stop.

I really do not think anyone outside of this life understands.  I have no idea who in my family reads my blog but am sure if they are reading this one I will catch all kinds of grief.  This is my place!  This is my blog.  This is where I let loose.  So, if you are reading this and are offended -- please don't be.  Or stop reading now before it gets worse. :)

This weekend we are having a family get together which we do every year to celebrate Halloween.  It is always in the late afternoon/evening.  We grill hot dogs, make chili, bob for apples - - - it's a lot of fun and the kids LOVE IT.  This year we were told that we would need to move the time up to 2p because there was a chance that the Rangers would be in the World Series (Woot-Woot!!).  Ummmm - yea - I'm super happy about the Rangers this year too but I'm sorry - my family doesn't have the luxury of planning events around a baseball game.  It's just not that easy for us.  We compromised on 3p which is still early for Nate's schedule but we don't want to be a major pain.

Hey - guess what??  The Rangers are in the World Series and it was mentioned that it would be better if we could move the time back up to 2p which we cannot do.  Not even possible for us.  Nate naps at that time and if it is at 2p --- what time would we eat?  How would that effect his bg?  How would the rest of the night go?  What if he's high - what if he's low? See - everything is about diabetes in our world and although it is the most important thing to us --- it clearly is not even on the radar of others.  It's such a hard balance.  I'm totally stressed because I know I come off as looking like a hard ass that won't budge but it's just not that easy.

Now I'm consumed with Thanksgiving and Christmas and what those days will hold with family.  What time will we eat, how will we control Nate's diabetes those days?  Should I just ease up and let him have an off day?  One day won't hurt him ---- or will it?  I just don't know and it is not worth the chance.  I work so hard to keep him healthy, his numbers in range and am always thinking about how each and every number effects his little body.  I find it very difficult to just relax and roll with it when it comes to Nate's health.

Don't get me wrong Nate's OmniPod makes life much easier than it was when he was on MDI but he still naps and is very grumpy if he doesn't and we still need to stay on a schedule so that I can keep my sanity.  :)
What's left of it anyway?!?!!?

How do you balance it and make everyone happy?

I'm such a hypocrite.  Two years ago I didn't give a flip. Why should I expect the others around me to care when  not so long ago ---- I was one of the others?!?!

7 comments:

Denise said...

First off, don't be so hard on yourself. Most of us didn't know the complexities of diabetes and what a pain it is to care for a child with it (especially one as young as Nate) I know I didn't! You are doing such an awesome job. Do what you feel is best for your child and (excuse me) screw everyone else.

Personally, I got Bryce on a pump so he could just be a kid. I let him eat whatever I let my non-D kids eat (which is less than most parents let their kids eat but still enough of a treat) If he is high at the time, I cringe and just bolus him like crazy. I have talked to my endo and a couple CDEs and others that basically told me to not stress the occasional highs, let him have treats.

Should you ease up? Maybe. but you know your son and what you can handle better than anyone else. Whatever choice you make will be the right one because you love Nate.

Reyna said...

Laura, you are not a hypocrite at all. I was a freakin' nurse in a Pediatric ICU for the love of Pete and I had NO IDEA what really went into managing type 1 diabetes.

When Joe was 3 and 4...our schedule saved us. I felt Joe's numbers were "more reliable" with set meal and snack times AND with set carb grams. It made the gluco-coaster less dramatic, if you will.

Now that Joe is older, I find that we can loosen up a bit on the schedule. Can he just snack willy-nilly - heck no! But, I have found that the schedule doesn't have to be so strict to accomodate stable numbers. I think it comes with age. For the next few years I think, unfortunately, the schedule will need to be in place for your sanity and for Nates wellbeing.

I love you and all that you do to care for your most gorgeous Nate The Great!!! MUAHHHHH

Heather said...

I agree with Denise, don't be so hard on yourself. A couple days won't hurt. I tend to be a little more laid back about it on Thanksgiving and Christmas. Mostly because I have to be or I'll go crazy. The Holidays are crazy enough with my family and add D to that and I pretty much go insane. I only wish that our families would be more accommodating to our eating schedule, but they aren't.

I should have pushed the issue when Lovebug was first diagnosed, but I didn't. I didn't want to offend anyone. I tried to work around things. Now I wish I hadn't been so nice about it. Maybe they would understand more if I would have pushed the issue. Then again maybe not.

You do what is right for you and your family and shame on them if they don't try to understand.

Leigh said...

Thank you, Laura. You could not have pegged more how I feel. We are just about 2.5 months into this and we for sure don't have it all figured out, but still, it is just getting all over me that people don't get it! I mean, no it isn't ok that my mother-in-law got chocolate milk and thought it was ok because it was skim. Hell-ooo? it is 26 grams of carbs FOR. A. DRINK. How hard is it to understand you have to look at the CARBS, not the sugar... not the calories... the CARBS! And good grief, did they always have so many cookies and donuts at Sunday School or do I just notice it now that I would really prefer that Aiden didn't have it. And why did my health nut of a five year old daughter, Emma (non-D) suddenly decide that she HAD to have said cookies when she never wanted them before! Ugh!!But I just feel terrible because my Dad has had type 2 for a while and I just busted out the full sugar desserts in front of him like I was Paula Deen. :( How mean was that? And then there is the issue about me wanting people to see Aiden as just the precious litte 3 year old that he is and that he is "just like everyone else" and it makes me furious when people say that he can't have this or that and I want to yell at them that he can. But at the same time, I want everyone to know the seriousness of the disease and how it is HARD and we do need to do everything we can to find a CURE! So... all that to say... Thank you. It helps so much to know that others have the same thoughts and feelings that I do. :)

Alexis of Justices Misbehaving Pancreas said...

I dont think yourE a hypocrite at all. Why? Because no one took the time to educate you but youre taking the time to educate them. We dont have family in vegas which is where we have been living since J got dxed but my moms coming to visit today with my brothers who are 7 and 10 and I let her know. We have a schedule, when Js high NO ONE eats. We have protein and wait for the carbs till hes at a reasonable number to eat, if hes low NO ONE plays we all sit down and relax till he comes up. Im with you. Ppl dont get the effort we put into keeping our kids safe, and healthy. I dont think you should have to let him have an off day but thats just me. We know how shitty highs feel for them and if ketones join the party well then fuck! Then they will all feel your wrath and regret it anyway. So long story short do what you feel is right for you and yours, dont concern yourself with whats best for them. YOURE AN AWESOME MOM AND PANCREAS DONT YOU FORGET IT!!! LOVE YA!

Hallie said...

Oh geez... well, if you're a hypocrite then so am I! I so get this. THings are better now with the pump... but on shots it was awful. It's still hard. To be at a bday party and need to eat dinner... and cake... at the same time. We can't wait an hour. She'll crash if we double bolus like that. Time... oh yes. If we are getting together at 6 for dinner... then we need to be ready to eat at 6. They don't get it. And you feel like an ass for getting uptight about it. But you know what it does to their bodies. I feel your pain. I finally just was like - I'm doing what's right for my girl and the rest of you be damned. If you don't like it - kiss my grits! That's why to this day it haunts me the way I handled students with D. I didnt get it.
Hang in there, lady. Do what's right for you and keep on educating and advocating. Some people won't get it. Ever. Some will. Know that you are an awesome possum! No matter what!

sfincham said...

He's still very young and won't know the difference...if this schedule doesn't work for you and the D...well it just doesn't. I didn't send Ellie to pre school today because 1) I really don't have her costume ready for her (costume day at school) and 2) We went on a road trip last weekend and she was high most of the 4 days we were gone...Pre school was going to be nothing but candy and cake and quite frankly she has no idea she missed anything. This will be the last year I can probably get away with her not participating in an event like this and I took full advantage of the fact that I could get away with her missing and me not having to battle a nasty high and arguing over how much candy she can eat...I feel like a big ol' piece of crap, don't get me wrong. But you do what is right for you and your family and let everyone else decide what they will ('cause they are gonna anyway). Show up late if you have to, do it with grace and know that you did it because it was important for you and yours...they'll never truly get it of course, but they may try harder next year and your schedule may be different next year so it won't matter anyway?! Remember, Halloween isn't necessary...ever. Cook your own little event up at home and enjoy without stress! (you don't even have to tell anyone you all did that!) Bobbbbb in your own backyard bbbbaby!