No way!!!! It is not possible that it has been three months since I last posted on here....
Well, for those of you that thought I had fallen off the face of the earth - it ain't so. My mind may have, but I have been here all along.
So... being 10 minutes past my bedtime I'll do the super-duper coles notes (x18 = cliff notes) on the last 92 days.
Had a beautiful day for Jonathan's Journey's Second Annual Carwash and netted a nice take for JDRF
Walk day was awesome. Sunny, not too hot, great turn out and best walk day total in local JDRF history.
Jonathan's A1c at his July check-up was down to 7.7% (clinic's target for his age is 8.0%)
The mentor program is off the ground and the outreach group is retooling for a September relaunch.
I finished tonight my first draft for the school policies talk at the Back To School event on the 31st.
Ok, I'll admit it. I got in a real funk in the spring. I don't know exactly why, but it was almost worse the the months post-Dx. Whatever the cause though, the fog seems to have lifted somewhat. Almost 2 years under our belts and some new changes coming up, maybe I cleared that hump. Who knows. Anyhoo, things are pretty good and for the most part really routine. In the case of T1D though... I'll take boring any day!!!
"Normal is what everyone else is and you are not." Dr. Soran - ST:Generations
I was told shortly after Jonathan was first diagnosed that we would "find a new normal". At the time, I thought that meant that we would integrate Diabetes into our lives and eventually the wound it opened would heal around it and it would just become a part of us. In a way I guess that's kind of what happened, but I think it went a little beyond that.
Yesterday, as I was approaching the verge of a mini-mental collapse over a bunch of BS at work, I sat down with someone to talk and they were surprised about how stressed out I was over the matters at hand. They said, "well, I'm sure things at home aren't helping either." I knew they were referring to dealing with my son's Type 1 and at first I was about to dismiss the notion that it could be a major contributor, but then it suddenly hit me - my little boy's life hangs in the balance of decisions I make every day, he's basically on life support and that which keeps him alive could kill him. We've barely had a solid night's sleep in 20 months and there are many more nights to come... And then it smacked me like a ton of bricks, somehow, some way, this had become "OK". And I thought to myself "WTF!?!?!?!" This is NOT OK. This is not what a 5yr old should have to live with, this is not how a family is supposed to be managing their lives, this is totally wrong.
I think what happened is (and I don't want to give it up, but I think I'll have to change my approach) in all my efforts to make life an normal as possible for Jonathan and the rest of the family, and trying to assure people that things are under control and all is well, I somehow tricked myself into downplaying just how perilous and damning this thing can be.
Then, just last night, after a day of phenomenal numbers (like non-diabetic numbers), Jonathan was a little high at 10pm (13.5 / 243), so I pushed his buttons and didn't really give it a second thought. At 2:30 this morning I did my nightly shuffle into his room to find 2.9 (52). Oh $#!^! 3/4 of a cup of milk and 40 minutes later he was 5.9 (106) - 5.7 at 6am, and 5.9 at breakfast. So what the heck would have happened if I hadn't done my nightly rounds? I shudder to think, especially after a Princess' recent horror. I've never questioned a 13.5 before, that's not totally unusual, and normally a wonky reading is over 20 and that needs to be re-checked.
This morning I got another one. Part of my morning routine is to check the mail, weather, and updates on my phone before moving on to get ready, and there it was on the top of my news feed:
"In my house the "medicine" that could save you, could kill you. In my house juice boxes save lives. In my house parents never sleep. In my house our days are measured in numbers. In my house my child must be an adult. In my house we dread bedtime. In my house blood is shed every day. In my house this is the norm. Type 1 lives in my house."
So despite my self-administered delusion, the fact of the matter is, there's aren't seven days a week - there are 3 days in a set. A 2am walk to the washroom isn't something that will happen after 40 - it will be routine for the next 20. As surely as there are 365 days in a year (occasionally 366) - there will be 3300+ bloody fingers, 122+ set changes, 4+ clinics / A1c tests, and 31,536,000+ chances to do it wrong.
I guess "normal" is we make it, but the truth is my head has been in the sand lately, and while ignorance can be bliss it can become hell. While living life somewhere in between I'm reminded that it's important to keep the truth in mind.
Jonathan and I had the opportunity to do something pretty cool recently - we met John Chick of the NFL's Indianapolis Colts. John is a defensive end who, with the CFL's Saskatchewan Roughriders,won the 2009 Grey Cup championship and was named the CFL's Most Outstanding Defensive Player for that same year. It takes a lot of hard work and dedication to become a professional athlete, but it's all the sweeter when Type 1 Diabetes doesn't stop you.
John was diagnosed at the age of 14 while already playing football in eighth grade. In an instant it seemed to most like that was the end of his dreams of becoming a professional football player - not to John though. Managing his diabetes with multiple daily injections, he continued playing and received a scholarship to Utah State University.
In his freshman year his blood sugar dipped too low while driving after a practice and he rear-ended a stopped car at about 70km/hr (~45mph) totaling both vehicles in the incident; fortunately there were no serious injuries. He considered this a huge eye-opener and decided that MDI was not reliable enough and it was time to switch to the pump. Although the linked video might be considered somewhat misleading in how "automatically" the pump maintains blood sugar, he did find it to be a huge improvement over shots.
John wears his pump all the time, even when playing, and in six years on it has never broken one despite the physicality of his profession. He spoke to us in a very matter-of-fact way about how Type 1 has been a part of his life, but never a defining or limiting factor. He talked about the importance of being positive and believing in ones self, but also how important it is to stay on top of this disease and make sure that it doesn't get an upper hand.
He also emphasized that just as important as it is to not let Diabetes limit you, don't limit yourself, don't settle. Yes he is a CFL champion and an NFL player, but being on the team - being on the practice roster - isn't enough, he wants to be the best. As a 28 year old husband, father of four children under the age of 5, and one of the top athletes in his sport, he knows that there is still more to do and he has no doubts about doing it, diabetic or otherwise.
Pause the audio player and press play below:
I don't think Jonathan really took in a lot of the detail of what John talked about, but sitting there and watching him stare up at this 6'4", 260ish pound guy I'm pretty sure he got the hint that diabetes doesn't mean the end of a journey, you just have to bring it along with you and bend it's will to your own.
I don't think I'll ever forget last year when I started my big JDRF fund raising push for 2010. I remember making that first video and how tough it was; not technically, but emotionally. It was even hard to write the e-mails to everyone telling them about what Jonathan and so many others go through on a daily basis and what the real risks of diabetes are even though we try to not dwell on them every day.
So I don't know why I thought this year would be any easier. Jonathan is a year older, a few inches taller, and more amazing than ever, but when I have to sit down and really think about it I can't help but hurt when I think about the issues he may have to face. I remember just how much I hate this f*^%!#@ disease and how really helpless and small I feel next to it.
Maybe it's a good thing though. Maybe, if I can focus a little, all those nasty feelings can be channeled to fuel the drive to do something better. Use the dark side against itself. I don't know, I guess we'll have to see how that works out. In the mean time, I'll just keep plugging away until I get what I really want.
Some may argue it is simply a matter of semantics. I call it opposite perspectives and a life choice.
It's all about "is" vs. "has".
is /ɪz/ –verb 3rd person singular present indicative of be.
has /hæz/ –verb a 3rd person singular present indicative of have.
To be, to exist, to in most basic terms define one's self. OR To posses, to carry with, present in one's life.
I made a conscious decision early on that as a father, it is my responsibility to not only provide food, clothing and shelter to my children, but also to teach and to lead and to help them develop their sense of self and become their own individuals. So, after Jonathan's diagnosis, it didn't take much to realize that it was going to be on me (and my wife, and to an extent our daughter) to do everything we can to reinforce the difference between is and has when it comes to this disease. There are enough hang-ups, misconceptions, and challenges with Type 1 Diabetes as it is that I can not accept the possibility that it would cause Jonathan to doubt himself or hold himself back from anything in life that he wants to do.
Before we even left the hospital I made a very clear distinction between "being" and "having" Type 1 Diabetes. I promised myself and, by extension, Jonathan that I would not let this define who he is; regardless of how far reaching into our lives it could become.
So, what is the "Is Trap"? I think it comes down to mostly verbal laziness with a small contribution by societal influences. Here is a comparative example of the simplest form of the Is Trap:
1) My son is a Type 1 Diabetic. 2) My son has Type 1 Diabetes.
#2 Was the one I had planned on going with all along. It's probably the most frequently used line since it pretty much has to be said to preface any statement on the subject when talking with someone who doesn't already know. I've noticed lately however that my "has"s have been turning into "is"s. I'm not sure when it started exactly, but once I realized I was doing it, it dawned on me that it was going to be harder to hold that distinction than I thought and that's when I first knew about the "Is Trap".
One thing I've learned is that you don't necessairly have to tell a child someting in order for them to believe it. They are observant and open-minded little information sponges. They pick things up from conversations had with other people, from how we act, and from what we do. Worse yet, if they recieve conflicting information between what is said to them and what is said and done arond them, then not only is credibility lost, but they will tend to believe that the indirect information is probably the truth.
Like with so many other things in life, one thing can lead to another and eventually the best intentions can turn into disasters. So seeing the "Is Trap" really took me aback because I hadn't expected to put my foot in it so easily or quickly. I'm hoping I've learned from this and can keep it close to me so that I don't slip into a pattern of defining Jonathan by his diabetes as opposed to remembering that is it something that is only a part of his life.
I think I've been more aware these last two months than ever before that this is more about compromise and give and take than anything else. Some days are better than others, that’s for sure, but when you fully believe that everything is going along perfectly fine and that all comes to a screeching halt in one split second, it seems to have a profound effect.
About four weeks ago, Jonathan had his clinic appointment.His A1c was exactly the same as it was in October, and that was up over a full % from August.
“What was I doing wrong?” I asked myself.Now I know that these appointments are not supposed to parental report cards, and I really do not believe I took it that way, but at the same time I was doing everything I was supposed to and we were only moving backwards.Not only that, I was under the impression that we were doing really well and then I was abruptly told that it was in fact the opposite that was true.
So, after leaving that appointment with new pump settings, new targets, and a new mind set, Jonathans average BG reading is now 25% less than it was a month ago and there are very few arrows at the top of the chart (actually had a two week run with none).
We’re in a new groove, but I still have this nagging feeling over my head that wasn’t there the first year and a bit.We can’t win, not truly, a stalemate at best.Keep the monster at bay.
I think Jonathan has picked up on it too.He asks every so often “When I’m [insert number here] years old, will I still have to have site changes?”The one that really caught me off guard was when he asked last week “Daddy… if I stop doing site changes, will I die?”When I heard that I just about did.I’ve tried to explain to him amid protests and pouts that the site changes are necessary to keep him healthy and safe, but some how he managed to equate that to staying alive.
In a way, it seems the first year was easier.There was shock and naivety and progress in the right direction.I knew that the more his A1c went down and the better reign we thought we had on his BGs and carbs and exercise and emotions… the harder it would be to not have a “setback”, but even at semblance of equilibrium the scales seem to tip every day and an illusion of consistency is no more.
I guess my good news is that I seem to be seeing some sort of light at the end of the tunnel. It's a long tunnel, and I'm on a treadmill going the other way, and that light is probably a train, but it's not as dark as it was. I'm very fortunate to have some wonderful D friends (online and off) who have been around to keep me up, even if they don't realize they were doing so to such an extent.
I still hope and pray that this terrible disease is ultimately obliterated and live will go back to the other normal, but I think in the mean time I'm a little more grounded and ever so slightly more prepared to get my head back in the game and keep running up that hill.
