Bravery
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.
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Tonya
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
Katszr
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
Susan
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
Scott
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
Diabetes Blog Week year 2, day 3
This topic is easy to write about because there are so many moments to choose from... and of all the crazy stuff that has happened since type I has been in our lives, this singular moment has all of the elements of a classic blooper. It has horror, the element of surprise, uncertainty, humor and something to clean up at the end - the only thing missing is that no one got hit in the nuts with a fungo bat...
This moment happens at 1:20 am the evening that the photo above was taken and includes a blooper that pays off with comedy three times! We were packing up our stuff in a Disney hotel room to make the transfer early the next morning to a Disney cruise ship. We had just finished our last day of the park side of our park/cruise vacation - our first since Arden’s diagnosis.
When I think back on the events that led to this ‘blooper’ I identify two main factors in it’s creation. One - this was our first effort in administering insulin in a significantly hot climate and two, Arden saw a little boy with a giant popsicle on our way back to the hotel around 10 pm. Now understand, this popsicle was legendary, a foot long and twisted like a taunt, fat shoe lace and rainbow colored to boot. Arden begged for one of those popsicles and we got her one. She ate it, we injected (pre OmniPod days) and went upon our merry way.
Fast-forward to 1:20 am. Kids are sleeping in the other room and Kelly, myself and my brother Brian are stuffing our clothes into luggage, sharing old stories, fond memories and laughing the night away. It was a great few hours right up until...
The grunting screams bellowed from the other room. Now I have to give Kelly and I a bit of credit because we had already weathered a seizure from too much insulin a month or so after Arden’s diagnosis and so we immediately recognized the grunting and we leapt into action. One of us went and got Arden (Kelly if I remember) and the other got out the fast acting glucose gel.
Now I know what you’re thinking, “When the hell does this get funny?”. The answer to that question is right now.
I don’t know how many of you have navigated a low BG seizure but it’s a daunting few minutes and while I believe that you’d all be fine handling one, hind-sight may show that you weren’t exactly at your best in the moment. For me, I forgot to pull of the tab pictured on the left before I attempted to squeeze the gel from the tube. When the gel didn’t come out I didn’t do the reasonable thing and look to see why, instead I just squeezed harder. That’s when the opposite corner of the tube popped a toothpick sized hole in it’s corner.
Blooper moment number one happens as we finally notice that the corner had blown open, figuring it out when we saw the sugary gel collecting on my hand. Kelly and I made the “WTF” face at each other and then without missing a beat I flipped the tube over and used that corner to get the gel into Arden’s cheek. Had Arden not been seizing I’m 100% positive that we would have cracked up in this moment. Kelly held Arden during all of this, (she is such a rock star mom) the seizure subsided and we got Arden stable and put her back to bed. Blooper two happens moments after the seizure stopped, we turned to see my brother looking like a crazy cat caught in a trap. He was freaked out, bug eyed and spinning in what he would describe to us the next day as a, “useless circle”.
As quick as this disaster began, it ended. There was a tension in the room and it would be relived when we saw the lightning bolt esq lines of glucose gel squirted all over the hotel walls and door. I had been squeezing so hard that the gel was flying from the small hole like a laser... we laughed like a room full of mental patients upon seeing the gel on the walls and then we cleaned it up and finished packing. It’s the hardest anything diabetes related has ever made us laugh and I hope that you got a laugh from it too.
One final thought. They should make the corners of the tube out of the stuff that the tab glue is made of... and you should follow me on Twitter @ArdensDay. And while you’re here why not check out the rest of the site (I hear my post fromyesterday is quite good :)
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You're going to make me blush...
Diabetes Blog Week year 2, day 2
What should I write about and should it be funny or serious? Usually I know what I’m going to write about before I sit down but tonight for day two of diabetes blog week, I’m going to decide with the keys. Today’s topic is an invitation to write a letter to something or some one.
The recipient possibilities are nearly endless. I could easily write to Arden and say so much, to my son Cole for putting up with all of this as well as he does. My lovely wife Kelly definitely deserves to be told how amazing she is...
I could thank Arden’s OmniPod, DexCom 7+ or the diligent school nurses that we are so lucky to have. hmmmm... I could rant about a number of things but... wait, I’ve got it.
Dear Grief, Perspective and Exhaustion,
You three are kind of the ghosts of diabetes to me. I grew up fairly meagerly, my parents divorced when I was thirteen, we never had any money and generally things didn’t seem to go our way but I was never a sad person. I’d say that my parents getting divorced was the single worst thing that happened to me in my formidable years. With the exception of the passing of my Grandmother, who I was very close to, I didn’t have very much experience with grief.
Finding out that your child has a disease that is not curable, demands twenty-four hour attention, can cause death if not properly managed and may likely shorten and or impede her life even if we follow every step correctly, well, that’s about the most succinct example of grief that I can imagine. Arden’s diagnosis felt much like you’ve heard other terrible things described. That is grief, when you arrived I felt as if a truck had been parked on my chest much like the time I realized that my first love stopped loving me, except this was a million times more intense and it lasted much, much longer. You made me cry, and stare into space more then I care to remember. For a time, I thought that I beat you and for all intents and purposes I did. You don’t loom over my days anymore and I am able to ignore the fact that you lurk around every corner and that one day I fear that you’ll return to show me that I haven’t seen anything yet. Still, I’m a better person for having met and tussled with you. I’ll thank you for that and for introducing me to your partner perspective. I want you to know that in the time between now and when we meet again I’m going to be preparing because I don’t want you to land the first punch again.
I won’t bore you perspective with another note as I’ve mentioned you before here on this site. You’re an interesting fellow perspective, a master of disguise really. You appear different to each person that you introduce yourself to and your gift is back handed isn’t it? You have life’s ultimate lesson to impart but the recipient can’t be taught the entire truth without being shown the darkest depths of their own fear. The real irony is that the enlightenment you gave me came at a price that I wasn’t interested in paying. I detest that you chose us and at the same time, I thank you for your gift. Without the knowledge that comes from knowing that our dear child may pass at any time for the want of a cookie... Well, we wouldn’t feel the peace that comes from knowing how truly unimportant most things really are. I walk this life with a calm that only you could have given me - though I much preferred my former ignorance to this and would gladly trade it back if you are interested.
The knowledge that there is only one thing in the world that is worse then living everyday with diabetes is oddly freeing. The calm that accompanies having, what I believe is the widest perspective allowed by nature has centered me in a way that I’d have never imagined possible. Sadly, the pursuit of these truths and the daily practice of them leads to one place - exhaustion.
The constant state of needing a nap that Kelly and I now exist with is the byproduct of grief and perspective’s lessons. I am winning the battle against exhaustion, having trained myself to live rather well on a few hours of broken sleep. I know that there are days that I function better then others but what frightens me is the concern that I can only keep this up for a finite amount of time and while I don’t worry about what may one day happen to me, I do worry that I won’t be able to keep this up for the amount of time that Arden requires.
I loath what the three of you have done to Arden and our family. I shudder when I think of all the turbulence that you’ve needlessly added to our lives and yet I can’t imagine understanding the world and this life as clearly as I do without your uninvited presence. You three are my metaphorical ghosts of past, present and future.
Scott
You can follow me on Twitter @ArdensDay
See my day three post about diabetes bloopers here.
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I can't wait to read tomorrows blog!
Diabetes Blog Week year 2, day 1
The list of things that I am not good at is extensive, it’s embarrassing really and it includes writing for Diabetes Blog Week. Here’s the honest thing... I don’t read other people’s blogs very often and these topics always have to do with other people. I wish that I did read more of what is out there but I don’t and for many good reasons. They are:
I don’t have time... I don’t like to read... I’m afraid that my grammar is atrocious and that I’ll figure out just how bad it is when I see good writing. But mainly...
I want my blog to be as unique as I can make it and I’m afraid that I’ll be too influenced by all of your amazing writing and begin to lose my voice. Goofy? Maybe. High-minded and over-thought, perhaps but I promise not in a uppity way and it is a real fear.
Don’t get me wrong. If I follow you or you follow me I’ve read your stuff and there are a number of blogs that I make my way back to rather frequently. I think of it like when a therapist goes to a therapist. You have all helped me in so many ways that I could never properly say thank you. That said and I know how strange this will sound but when I started Arden’s Day I had never seen a diabetes blog, forum or even spoken to another parent of a T1 child. I was all like, “look at my honest blog about parenting type I kids, why hasn’t someone else already thought of this? I’m going to make a YouTube video... Look out Chris Columbus coming through!”, or something like that. Then I realized that you were all out there and I felt like I left England to find the New World but it was 1974.
I almost stopped blogging once I realized how many people were out there. I thought that this world that I “discovered” didn’t need another voice. I was especially worried that I seemed to be the only father in a rather large group of wonderful Moms and I felt out of place. So I began to just use the blog to hock people for Arden’s JDRF walk. Then one day I got the first of what now is countless emails thanking me for writing about Arden’s day. People were being helped by my want to be transparent about diabetes. The first email I ever got said, “your website saved my life in the first months of my son’s diagnosis” - you can bet that made me cry. So I stayed. I worked on my writing and I found enough courage to be even more transparent.
Now back to Diabetes Blog Week. What a great idea and thanks to Karen at http://www.bittersweetdiabetes.com for making it happen again this year! Don’t be like me, head over and check out the other writing... all promises to be better than this contrived crap I just spewed out.
My post has nothing to do with the topic again. I can’t write from a prompt, my brain just doesn’t work like that. So, okay that’s the difference that I admire in all of you. Ugh, I’m being too literal with the topic aren’t I?
Let’s end like this... there are a ton of thoughtful people out in the world living with some really terrible shit, a hand full of them write about it on the internet, something that I do and have a great amount of respect for. I’ve seen blogs come and go, this August will be my fourth anniversary and I hope that you all keep it up and that others continue in this tradition. You never know when you might write something that will save another person from losing their grip - funny thing is it helps you as much as it helps them. Good stuff!
Follow me on Twitter @ArdensDay. If you do I promise that I’ll do better on Day 2 of Blog Week. It’s letter writing day, free form baby... I can do that!
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You should give yourself some more credit, you have a voice, and it needs to be heard! :)
What lies beyond tired
Just past tired and around the bend from exhausted lies a magical place called delirious and I am writing to you from there.
Monday night began my journey to this place where my head floats, my thoughts make less sense and no one is on time for school. Arden played in a softball game Monday evening, then she ate, we bolused and around midnight her BG unexpectedly fell. It wasn’t one of those crazy double arrow down (for you CGM users) and still a long time to go until the bolus is gone declines. It was the slow fall, so slow that the CGM can’t even report an arrow, you just watch the number slowly drop. I was able to stop the fall at 60 by turning off her basal but with no food it was going to hang there until around 3:30 am. So I sat up in bed playing games on my iPad, listening to music and trying not to wake Kelly. Arden BG began to climb and I went to sleep at about 3:15.
Tuesday night added insult to that injury as Arden began to rise unexpectedly after she went to bed and I didn’t have the courage to bolus as much as I should have. I ended up chipping at the BG over the next few hours trying to get her down. That was a mistake because at 1 am I finally had to give a large bolus and then I didn’t want to sleep until that insulin had run it’s course - I looked at the clock as my eyes finally closed, it was 4:40 am.
Last night hunger was my fickle foe. Arden was hungry at bedtime and I let her eat. We had just changed her CGM sensor so I didn’t have an arrow to tell me what was happening. She had a small snack and I waited 15 minutes to bolus for the food incase she was dropping (hunger for her at that time of night usually indicates an upcoming fall). As my bad luck would have it there was no drop... she was just hungry and so I had to bolus late at night again but I did get to bed at a respectable 2:30 am, a bedtime that wouldn’t have been bad if the prior two nights weren’t so tough.
All of this has left me very tired. I have what I think is called brain fog, my neck is also stiff and my stomach a bit out of sorts - I haven’t had the energy to do half of the things that I had planned on doing this week and I wasn’t able to get Arden to school on time the other day. Why am I telling you this, am I complaining or looking for a virtual pat on the back? No, I’m telling you because of a tweet that I read the other morning.
Every night I put Arden to bed I think the same thing. It’s not a particularly uplifting thought and it isn’t a conscious one but it’s come into my mind every night since she was diagnosed. I tuck her in, sometimes we read a book and always before I leave the room I give her one last kiss good night - then I think, “please don’t die”.
I was exhausted the other morning until I read that tweet and then I pulled myself right together. “This is just a few days of being tired”, I thought. It’s not the end of my world and it certainly isn’t equivalent to my daughter not being here anymore. I want to say that I’m in no way indicating that the parents of typeI children that have passed away in their sleep did anything neglectful. There are nights when everything looks perfect and the situation could and has changed the moment I’ve gone to sleep. I’m not in control of any of this and I know it but I am going to be as vigilante as my body will allow me. When I can’t do it anymore I always ask my wife Kelly if she can take a night and she jumps right in even though she works such long and stressful hours at her job.
Anyway, I imagine that I can’t be the only one who has this thought at bed time and I wanted you to know that you’re not alone. That I am standing in a hallway just like you. Wondering if I’ve handle the day properly, if the insulin decisions that I made are going to come back to bite me at 2 am. The truth is we are all standing in that hall, at a bed side or sitting on the sofa pretending to watch TV while we go over the day in our minds. I just thought that if you knew how exhausted I was right now and that I wasn’t giving in to it, well... I thought that maybe you could feed off of that if you were having a similar couple of days.
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As Penny said, I feel your sameness too. It has improved significantly having DexCom though. I don't find myself staying awake quite as much as just waking up. Maybe I'm kidding myself??
If my kids aren't awake by 8am I often panic that something deadful has happened. So I suppose this makes me more aggressive with their management.
My heart goes out to that family. They must have so many questions which I suspect they will never get answers too.