Justin's Story

Monday, May 13, 2013

Share & Don't Share - Diabetes Blog Week Day 1

Topic for today:

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?(Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.)




May 19th will be 6 months since Justins diagnosis.  I have loved his endocrinologist since the first time we met in the hospital!  She has the most easygoing, sweet way about her.  One of the first things she said to me was "He's still your little boy, and he can still do anything" She gets along with Justin so well, when were there she always wants a hug from him, she says he's so sweet.  Justin makes her laugh the whole time, he just chats with her about everything!  We always have had more than 15 minutes with her, she will answer questions, and just get to know us better.  

If there was one thing I wish she could see it would be the simple things like, when we are leaving church and each kid gets to pick a piece of candy on the way out, he can still take one, but has to wait for the right time to eat it, while the other kids are eating it on the way out and he's begging me to eat it now.  Or at school when the kids bring in cookies or cupcakes for a birthday and he has to go check his sugar first, and then we decide if its ok for him to have.  (Most of the time it is fine, and we take the frosting off the cupcakes, he doesn't like it anyway)  But just the sound of disappointment in his voice at times makes me so sad. Just the daily struggle with trying to let him still enjoy things other kids can just eat whenever, and keeping the BG numbers in check.  

The one thing I wouldn't want her to see is that I have complete emotional breakdowns.  I can't do anything but cry. When we've been at her office, she's always is telling me how well we are all handling everything, and for the most part we are.  We are going through the motions really, we have no choice if we want our son to be healthy.  We put on our happy faces and deal with it.  But every so often it gets the best of me, and I feel like I just can't deal with it anymore. I get tired of living by the clock, and making sure he eats at certain times, instead of when he's ready to eat, and begging him at times to eat a snack even though he's not hungry.  But I don't want him to go low, and he doesn't completely understand that yet.  
Basically I'd like her to see how hard we try, and how hard it is to be perfect at this.  Not too much to ask is it? :)
This is Justin with his awesome endo Dr. Damian @ our local JDRF Walk
You'll have to excuse the koolaid(crystal light) mustache LOL







2 comments:

  1. The emotional breakdowns... I so remember those. I think we all go through a long period of time where we just go through the motions. What choice do we have but to get up and keep moving forward.

    I use to hate when people said "it will get better". I was mad and I really didn't believe it, but it did. And now I find myself telling people the very thing that I use to roll my eyes at. lol Go figure :/

    Not sure if its come up, but the pump helps with those "extra treats" at school. It also helps you not set your clock to meal times(That stuff can just make your brain hurt). I'll be honest, it took me a year and a half to agree to try it, I didn't want this "thing" attached to him. Making him look different. Making his diabetes obvious. But it was the best thing we did. Unless Justin pulls his shirt up, you can't see it and most important, Justin loves it because it gives him that sense of normalcy when his class is eating that cupcake or the kids at church are cracking open those candies. My only regret is that we waited so long.

    I am sure Dr. Damian know how hard you try. I am sure you and Justin make her proud. I am also sure she doesn't expect you to be perfect. D has no manual for us to follow...it waits for us to find that perfect play and it changes the game.

    We slip. We screw up. We forget an injection on a crazy morning(no really we do)and we walk out the door, to go to dinner, without our meters. It's okay. I promise!

    You've got this :)

    ReplyDelete
    Replies
    1. I can't wait for it "to get better", Its been a while since a good cry, so its getting farther apart.

      The pump has not come up yet, she did tell us it would be 6 months-a year before we discuss that. When I ask Justin about it, he's not very interested right now LOL.....but he's the one that has to wear it, so I won't make him do something he's not ready for yet.

      That last paragraph totally makes me feel good.....We have left the house to go to dinner and forgot the meter (of course I freaked out and we went back to get it LOL) Lord help me the day I get to work and realize I didn't give him his injection! haha!!

      Thank you so much for the kind words, it really helps so much talking to others going through the same thing!

      Delete