Justin's Story

Tuesday, March 19, 2013

4 Months into this lifelong journey, honeymoon is over....

Today marks 4 months since Justin was diagnosed.  Since diagnosis he has had approximately 360 insulin injections.  And has poked his finger to check his blood sugar about 720 times.  This is what 4 months of injections looks like:
4 months of insulin injections

I think I can say that the honeymoon is over.....he has had a lot of high numbers lately.  It's beyond frustrating.  The Dr. has already increased his morning dose, he's still eating the exact same breakfast, and still needs his sliding scale at lunch time at school.  He really hasn't had to get too many shots at school yet.  Now it's pretty much everyday.

He is still handling everything good.  I just pray for him to have strength when he needs it most.  I know there will hard days in his life when he's "managing" it all on his own.  The other day Chris asked if we should start trying to get him to do his own shots, my response was that he'll do it when he's ready, he has his whole life to do it himself.  I'm in no rush to have him do everything, I'm trying to keep his carefree innocence as long as I can.  He's already grown up so much in the last 4 months, just dealing with everything.

Me on the other hand, not as good.  Some days are great, others not so much. I keep things bottled up until I have a breakdown, not good at all.  I guess I need to give into having a good hard cry more often.  I'm so tired of living by the clock, the weekends are the toughest since we can't just stop to eat whenever, it's gotta be by a certain time or else he may have a low.  It just gets to me after a while.  I'm tired of the anger, sadness and guilt, it just sucks.  I put on my happy face most days even if all I wanna do is cry.  I know I have to be strong for Justin, but it's not as easy as people think.  I try my hardest not to let him see me cry, though he catches me sometimes.  The other night, I told him again how proud I am of him, and that he's an amazing, brave boy and I love him............his response was "Mom, if you think I'm so brave and amazing with everything how come you still cry?"   WOW!  I didn't know what to say to that one! 

One of the hardest things to deal with is the ridiculous comments people make.  4 months in, I'm pretty sure I've heard it all LOL!  Ok well maybe not all.....but people say really ridiculous things!

Here's a list of some I can think of right now:
  • It's juvenile diabetes right, so he'll grow out of it......umm NO!
  • If he eats an apple right before a meal that'll stabilize his sugars...again NO, just add more carbs to count!
  • I could never give my child a shot.....Yes actually you could if their life depended on it!
  • Its because he ate so much sugar?......Actually it has NOTHING to do with that!
  • Well at least it's "manageable".........sure, if that's what you wanna call it!
  • It could be worse.....Yes, yes it could.  We all have things to deal with in this life, I'm thankful there is insulin.  That isn't a cure, but just life support.  But please don't undermine what we have to deal with on a daily basis.
I always try to explain things to people when they say dumb stuff, but sometimes I wanna just let them have it!  It certainly doesn't make things any easier!    I hate that all day at work people will ask how my "big boy" is......I say he's great with a smile on my face, and he really is great....but sometimes I just wanna scream,  he's freaking insulin dependent for the rest of his damn life, has to deal with hypo's & hyper's, and it just sucks!  But it's just easier to smile...............

Some days are really good:

Some days are just hard:

And others are just lousy:

But we keep fighting, and "managing" since that the only option.  I keep praying for strength, sometimes I feel as if I have none left at all.   It is encouraging to read others stories, and talk with those who know what were dealing with. 

    Tuesday, March 5, 2013

    The end of the honeymoon?? Maybe........

    This past weekend was our first JDRF Walk to cure diabetes.  Our whole team had a lot of fun, and Justin was happy his friends were there supporting him.  There was stuff for the kids to play around with, and plenty of different companies there showing off their products and handing out goodies.  We got Disney cookbooks, books, a BG meter, I also was checking out some of the pumps.  Not sure if Justin will want to do that, I'm sure eventually he will, just not yet. Dr. said it would be 6 months to a year before we even discuss that.   I thought the omnipod looked really neat.  No tubing! We'll see.

    I feel like diabetes is a huge game.....of keep the sugar down.  He has been having some higher than normal numbers, and for no reason.  Had a few numbers over 300! Yikes!!  Of course it's came down and no ketones, but darn it's frustrating! I really think this is the end of the honeymoon, I will give it a few more days, that way they'll be a high pattern she can see, and email the numbers to the Dr. so she can let us know what to adjust with the insulin.  Today at school he was borderline where he needs insulin for his sliding scale, so I had them give him 1 unit since he's been running high. Then he ended up a little low around 75.....FRUSTRATING!!  

    Tonight while helping him with a shower, I noticed little bruises on his arms and legs from injections...that made me tear up, just a reminder of what he has to deal with for the rest of his life.  He never complains about it, he is so brave.  He makes me so proud how he's dealing with all of this.  He tells people that he is a type 1 diabetic, and what that means.  He really is amazing! 

    I've already learned that there will always be people that just don't "get it".  I've already heard plenty of ridiculous comments, that I just have a let roll off or I may go nutsThey think he'll grow out of it, or its because he ate too much sugar.  My mission is to make sure people know the difference between type 1 and 2.  Every chance I get, I will explain that :)  

    Here's some pictures from the walk last Saturday, Thanks again to Product Advance for sponsoring our awesome shirts!! 

    My Family :)

    And were off!

    Walking for a cure!

    Justin with one of his nurses from his hospital stay

    Justin and his Endocrinologist Dr. Damian