What's Normal?

It's such a fine line between normal and different.

As much as I remember being told Trey will lead a 'normal' life.  I can't help but to think this isn't normal.  It's different. 

As much as we don't want Trey to be 'different', the truth is, that he is.

I was recently out of town and I dropped Trey off with my step-dad for a bit.  I wanted Trey to have a snack before I left and Grandpa suggested an orange.  "It's healthy".  Yes, it is healthy, but it's not something Trey should really have for a snack without getting insulin for it.  Is that normal for every person?  No.

Trey was at 4x4 hockey on Sunday and had been on the ice for a long time. I could tell he was exhausted and needed a break, but do you think he would go to the bench to ask to sit? Hell no.  Momma Bear went to the bench, called him over and told him to sit.  His sugar was going up and he said, "I don't feel right.  I'm sort of dizzy and I'm really tired."  Normal? 

Grocery shopping with Trey requires label checking.  He sees something he wants, grabs it off the shelf, reads the carbs aloud, looks at me and either puts it in the cart or back on the shelf.  Normal for a 7 year old? 

Normal for a kid to know when he needs some protein to balance out his carbs in a snack/meal? 

Being woke up in the night - sometimes more than once - to eat Skittles or drink a juicebox isn't normal.

Asking a child to poke his finger 9 times a day, to remember to take his kit with him everywhere he goes, to having to ask mom/dad for a snack before eating and always having to have a diet soda instead of fruit juice isn't normal.  Unless you're T1. 

But he plays hockey, he eats pizza and McDonalds, he goes to birthday parties and eats a cupcake/cake.  Normal! 

Truth is he isn't normal - this life we live isn't normal.  It's different, and it's harder than hell.  We put on a brave face and plow our way through every 24 hours and if you didn't know our situation, you'd assume everything is well.  Truth is we don't get enough sleep; truth is we have diabetes on the brain 24/7/365.  Truth is every food item I look at, a number is associated with it.  (Example: I once saw a kid eat an applesauce pouch, a Slo-Poke candy, a Dilly Bar and a pack of fruit snacks all in the course of one hockey game.  Want to know what popped into my head?  10, 35, 24, 20.  In that order.  Carb counts for everything that child ate.) It's not because I'm trying to - it's because for the last 2 years that's how I've had to look at food and it's just how my brain works now.  Truth is T1 has put a strain on our family.  Truth is, Jordan and I don't go anywhere or do anything with friends because the question looms "Who's going to watch Trey?"  Truth is, it's also unfair to Delanie. 

Look, I'm not trying to have everyone say "Poor Natalie".  Read it how you want, but this life isn't for the weak.  It's a daily struggle and hell, sometimes it's an hourly struggle.  Jordan and I are in control of keeping our child alive and making the right decisions at the spur of the moment.  Even his school nurse verifies with me different things.  It's exhausting!  But here we are - living the life we were handed.  We don't know if we are doing it right, we don't know if we could be better, we are just doing the best we can.

There are still days I go through the grieving process.  There are days I feel so totally defeated by this disease, I cry for hours.  Some days we nail it and we smile and give high-fives.  Some days I'm so pissed off about it, that I wonder what we did to deserve this battle.  Sometimes I am thankful that it's not worse (such a touchy phase.  Please don't ever, ever say this to a T1 family).  We miss the easy life ... the life where Trey ate anything he wanted and we got to sleep 8 solid hours.  The life where anyone could watch Trey for 3 hours so mom and go to Lagers. . The life where we didn't even know what a normal blood sugar was or how disgusting the smell of insulin is.

But it's not our life.  Our life is complicated.  It's not normal - it's different. So many people don't understand it; and truthfully until you live it you can't fully wrap your head around it either.  But friends and even family just don't understand how much effort and thought it takes to make sure Trey is OK.  From extra CGM and pump sites, to making sure there is the correct foods/drinks for him, to monitor his activity level, to having someone 'watch' him. 
You can't just take Trey to an event without him having his kit, a snack and a bottle of water.  You can't allow him to eat foods without having to give him insulin.  If his sugar is high you don't feed him more carbs, therefore you must know the carb counts for foods and know he needs protein to go with it. Just because a food is healthy - it's not always safe for Trey's blood sugar.  Banana??? No way. EVERY DETAIL OF OUR LIVES revolves around Trey.  Everything. Normal??? Not for most, but I guess for us, it is.