I just read a blog over at the D-Mom Blog about post pump change highs and while I was reading it I thought, “I’ve said all of this to myself about a thousand times”. You should go read it but in a nutshell, some people experience significant highs after a pump change that seem unexplainable and they are difficult to resolve.
I found myself asking Arden’s NP about this a few visits ago after I tried everything that I could think of. We’ve tried, bolusing from the old site before changing, bolusing right after a change, getting Arden’s BG on the low side before a change, avoiding food an hour before and after and on and on. Sometimes it’s worked and sometimes not, results that were not exactly anything to go on...
Our NP thought about my question and answered, “maybe it’s stress”.
I initially ignored the NP’s thought that the highs could be stress related because Arden handles the change process like a champ but last night she said something to me while we were changing her OmniPod that made me rethink things.
“My friends are lucky”, she said. “They don’t have diabetes and they don’t have to do all of this”. Then for a moment she looked really sad. We talked about other people and the trials that they face, I ended the conversation by talking about a few people that we know who are autistic and I asked her which she’d rather be. She thought and said, “autistic, because at least they can’t die from that, I could die”. We hugged and finished the change as I brought the conversation back to a good place - and then like a brave little girl, she was off to play.
For ten minutes last night Arden had to think about her health, her mortality and life in a way that most small children never do and you know what, it is stressful.
So here’s my new thought. A lot of us take solace in the fact that our kids are so brave but maybe that thought is more for us then it is for them. Maybe, while they are sitting there with that brave face and hardly flinching as we poke them, maybe they are thinking on a level that we aren’t aware of. Let me change that... they are thinking about serious personal issues on a level that we as parents are trying to pretend don’t exist. Pretending, perhaps because there is already too much to think about, too much to stress about.
I’m going to share this with my wife and suggest that we spend more time talking about type I with Arden then we do now. Right now it’s all management and getting through a day but I think that probably isn’t enough. Arden doesn’t just need a good daily outcome, she needs a good life-long outcome.
Thanks to Leighann for writing something that made me confront what I saw last night, I may have pushed it down otherwise.
That’s it. Something to ponder.
The following are archived comments from this post. You can post new comments below.
Thank you so much for writing this post, Scott. You're so right about the 'pretending' we do. Our daughter might be unable to verbalize these thoughts the way Arden did, but I know she is processing it in a similar way, in her 4 yr old mind. Thank you for reminding me to always keep that in my T1 Mommy mind. Thank you so much for sharing this.
Wednesday, May 18, 2011 - 11:37 AM
Your post just brought me to tears, but that's ok...I needed that. My son was just diagnosed in Dec (he's 3), so we are still pretty "new" at this, but I have found myself MANY times telling him that he is my hero, that he is so brave and telling people that he seems unaffected by this new life and bragging about how well he's handled this change in his life. You are so right though...maybe they are just putting that face/attitude on for us parents because they feel they have to or feel that WE need it. Thanks for this...it was an eye opener.
Wednesday, May 18, 2011 - 04:05 PM
My son is turning 17 on Monday....he has been T1 for a year and a half. The amount he has matured since diagnosis is tremendous.... it forced him to grow up and think about life in ways he might not have been if he didn't have this.... He actually has said... "Any day I wake up.....is a good day." So.. yes... they become mature...beyond their years.
Wednesday, May 18, 2011 - 10:03 PM
Yes, your post brought me to tears. I think I do a lot of fooling myself. She has a cousin that is autistic, and as a teacher, I see many children with learning disabilities. I am always quick to think that I am lucky it is only T1. Your daughter is right though. None of those things will kill her. That is the underlying threat a person with T1 lives with every minute of every day. I am thankful I have a happy, loving daughter who is socially and mentally well-developed, but if I am honest with myself, there is a part of me way down deep inside that is very resentful that diabetes has insinuated itself into my family. Will I continue to fool myself? Absolutely! This challenge will not defeat me or my daughter. I refuse to let any type of defeatest ideas camp out in my head. Those thoughts are not welcome. They can introduce themselves and be recognized, but they are not given a seat and allowed to become comfortable. My daughter is not really old enough to truly comprehend the seriousness of her disease, and I don't use scare tactics to make her compliant (If you don't take your shots you could die or if you don't eat enough you could die....). I wish I would never have to witness the day she understands her own mortality. I do not want to see that innocence lost and the look in her eyes at that moment.
Thursday, May 26, 2011 - 03:54 PM
Thanks for all of your responses, they add so much to my original thought and I'm so happy that you took the time to post them!
I'm sorry that I made you cry... :(
Wednesday, June 1, 2011 - 09:23 AM