School Preparation
In one sense we were lucky, Arden was diagnosed so early in life that we had years to prepare for her first day of school. I’ll never forget sitting in a carb class at the hospital where Arden was diagnosed and thinking that some of the kids in that room were starting school in two weeks... they had two weeks to figure all of this out and then off to school where they would be asking a stranger care for their diabetes before they even knew what that meant. I was very scared by that idea.
So how did we prepare? The minute our son Cole returned to school in 2006 I made sure his teacher knew about Arden. I brought her up in conversation with the principal and the nurse so that somewhere in the back of their minds they knew she was coming. I wanted it to get around that Arden would be there in a few years. At this time there were zero type I kids at Ardens school.
Fast-forward to the beginning of the 2008 school year. I placed a call to the principal of the school Arden would be attending in 2009. We had a 20 minute conversation about Arden, type I and our expectations of her care. Again, just to keep the germ of a thought in everyone’s mind. By this time there were three type I kids at the school... in a few months Arden will make number 4.
So to re-cap. Step one was to open the lines of communication between our family and the school. Partially, to make sure that expectations were understood but also so that when school did start and we were all in the heat of the moment that there wouldn’t be any misunderstandings that may lead to hard feelings on any side. I maintain that good communication and a healthy amount of empathy on both sides for the other will make for a good experience. Everyone has a job to do, we are protecting Arden and the school has guidelines to follow. Either side being upset with the other would be very problematic and as much as anyone would like to believe that these situations won’t become cantankerous, they often do. And those problems can be difficult to come back from and would be destructive to Arden’s health.
Anniversary of Arden's Dx
It’s just after midnight and I’m posting to mark the three year anniversary of Arden’s diagnosis. It was almost exactly now three years ago when Kelly and I first thought that Arden may have type I diabetes. The next few hours were spent finding a 24hr pharmacy, learning how to check blood glucose and rushing to a hospital. I remember it being after 3 am when the doctor came into the room to deliver the news but to be honest we already knew. A moment has never before or ever since felt so very still and so utterly horrifying. The doctor’s words damaged my soul in a way that I don’t think it will ever rebound from. I couldn’t bring myself to look at Kelly, it felt like I was going to die.
To this day that feeling sometimes tries to creep in. It usually happens when I’m thinking about something that Arden will do one day, like going to school or sleeping at someone’s house for the first time. Stuff like that, stuff that normally feels good... Those things just scare the shit out of me and sometimes that feeling creeps in before I can stop it. It can only be described as the complete visceral and intellectual understanding that our lives are finite, immeasurable and more fragile then we care to admit. Because of that fear I never want to be far from Arden, it only takes a moment for something to happen and there are no indicators to guide us, none at least that can be trusted 100% of the time. Vigilance is Arden’s best chance at a healthy and long life.
Last night I went to bed at 3:30am because of Arden’s diabetes, her blood glucose just wouldn’t come down. I slept for five hours and upon waking spent the first two hours of the day figuring out why she was high and getting her stable. The hours that passed in between hurt Arden, not in a way that was evident today but in a way that may not be recognized for a decade or three, maybe not until she is sixty. Parents make mistakes, that is part of life but usually there is a little room for error usually the mistakes we make don’t shorten our children’s lives or damage their little bodies. I know two things for sure about type I; 1. every moment that Arden’s blood glucose isn’t normal is hurting her and 2. there is no way to keep her blood glucose normal for more then an hour or two at a time. It’s a morning, noon and night race to balance the scales between insulin and carbohydrates and I fear that we are always running behind.
In a few weeks Arden will be walking to raise awareness and funds for the Juvenile Diabetes Research Foundation and I hope you can find it in your heart to support her with a donation, by joining us at the walk or by attending the poker tournament that we’ve planned... maybe by being a part of all of those things? Vigilance is only Arden’s best chance until a cure is found. Right now there are millions of parents just like me sitting awake wondering if tonight is the night something will go wrong. Right now millions of adults with type I are wondering the same thing and somewhere their parents are scared because their children are too old for them to sit outside their bedroom doors to keep them safe from whatever diabetes has in store. Finding a cure would fix so much more then diabetes.
And that cure is close, some of the advancements made in just the last few years are astounding. Please help us help Arden by supporting type I research and all of the JDRF’s important endeavors. The JDRF does so much for children with type I, the research is just the tip of the iceberg. You can click on the links below to get started now.
Register for the poker tournament
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Clinical Trials Connection
To find a cure, JDRF needs people with type 1 diabetes to consider participation in human clinical trials of experimental new therapies.
The JDRF Type 1 Diabetes Clinical Trials Connection is here to help people with type 1 diabetes better understand what is involved in participating in a clinical trial, and to simplify the process of finding trials that may be of interest to them or to their family members.
The goal of this service is to serve as a resource on the latest research advances, new research studies, and information about opportunities to participate in clinical trials.
Participating in a clinical trial is an important way for people to help to find a cure for type 1 diabetes and its complications. That's particularly true today, when JDRF's nearly 40 years of research leadership has brought us to the point where scientific advances made in the laboratory are being tested in people.
Find out more here
https://jdrf.optimalcare.com/patient/index.cfm
Poker Tournament
Arden’s Day is holding a No Limit Texas Hold’em Tournament to benefit the Arden’s 2009 JDRF Walk.
The date of the event is September 25, 2009.
Everything you need to register is at this link. If you know a poker player that might want to play please send them our web site address... there is a link to the tournament information on our main page.
Time and distance lend perspective
It has been six months since Arden made the switch to the OmniPod insulin pump.
The move to a pump has had many benefits, including lower A1C, a steading of her overnight BG readings and of course the disappearance of multiple daily injections. But there is another benefit that I have recently become aware of...
We have less stress.
When Arden was diagnosed we did what any of you would do, we followed directions. We learned how to give an injection and we gave them everyday, most days eight times or more. I didn’t realize then what I can see now. Being thrust into a life or death situation takes away the luxury of contemplation. I imagine being drafted to fight is similar in that you are handed a gun, taught too briefly how and when to use it and then thrown into the fray. If you dare take the time to question what you’ve been told... you’re dead.
Similarly, we gave Arden her shots. Two in the morning when she got out of bed. Another three hours later, then at 2pm, 4pm, 6:30 and two before bed. Eight times a day we stuck a needle into Arden, my best estimate is that she was stuck six thousand times in the first two years. I can tell you now what I could not perhaps for my own sanity have admitted then. It broke my heart every time. I probably gave 90% of those injections and the experience has left me with an indescribably feeling in my gut.
Every time Arden eats, drinks, gets into a car, runs, walks, gets quiet, is sad, trips or when it’s just been too long since one of those things has happened, she needs to be accessed. In those moments it’s as if someone whispers over your shoulder, “Arden has diabetes”. When I open my eyes at 4am because I heard a noise outside, my first thought is, “I should check Arden”. When I’m standing in left field watching Cole play baseball and Arden runs over to ask for a dollar... I hear the whisper. As oppressive as this fact of our life is, it was compounded by the injections. Because after all of the waiting, checking, testing and worrying I had to take out a vial of insulin. The vial is swabbed with alcohol and the needle is uncapped while the numbers run through your head, “her BG is 189, there is 40 minutes left on the last injection, she wants to eat a hot dog, hot dogs have no carbs but the roll is 23 carbs unless it’s a potato roll and then it’s 26, what if she doesn’t eat the entire hot dog?". Then I hold the vial up to my face and extract the insulin, tap tap on the needle, turn to my baby and jam it into her body. 8 times a day. I can tell you that takes a toll on your soul. I couldn’t say any of this before the OmniPod because admitting it would have taken away my ability to give those injections - but that is all gone now.
Today, we test Arden and tell the pump how many carbs she will eat and then press a button. Arden’s insulin pump didn’t take all of the worry out of diabetes but it has significantly lessened our stress.
Insulin pumps aren’t covered by everyone’s insurance and they are quite expensive. Children who are un or underinsured are incapably of getting the relief that I described here... I have been profoundly impacted by the benefits of insulin pumping and saddened by the fact that they aren’t, because of financial constraints, available to everyone who wants one. I am at the moment not sure how but I want to find a way to change that...
Update on 2011-09-24 14:41 by Scott Benner
This blog was linked via Twitter and FaceBook on 9/24/11 in response to a conversation that I had with one of the readers. If you are reading it now... it is not been six months since Arden switch from MDI to OmniPod as the blog indicates but over two years.