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?!?!