A day in the life
I some how deleted my post from Day one... This is it (reposted) word for word but I lost all of the nice comments you all left. Sorry!
This blog is an entry into blog week over at http://bittersweet-karen.blogspot.com Great thanks to Karen for this fantastic opportunity.
This is version 2 of my ‘Day in the life... with diabetes’ blog week entry. Version 1 is 85% complete and I don’t like it. I was about to post it when I decided to walk away from it for a moment, so I took a shower. I do my best thinking in the shower, as a matter of fact, if my iMac was water proof I think this blog would win a pulitzer. Sadly, it seems that I lose like 25 intelligence points when the hot water stops running down my neck, so with that in mind, here is my blog, v2, sans hot water.
My first pass at this writing exercise was solid, lots of times and actions documented. You know, “at 2am I test, she was...”. It was informative and lent insight to what a day is like when you are the parent of a type I diabetic. I just deleted it, deleted it because I realized that my audience likely falls into one of two camps; people that already know how much this all sucks and the people that can imagine how much this all sucks. So forget all of that and let’s talk about what a day with diabetes is really like.
My day is long, sad, exhausting, stressful and frantic. It is also, glorious, hopeful, enlightening and moving.
Some times when I walk from room to room and see my daughter Arden and I think, “Arden has diabetes” and that is just sad. It’s sad that I didn’t think, “look how pretty she is” or “she’s doing so well in school... at softball... as a person”. Don’t get me wrong, those things flood my mind most of the time but that I ever have that other thought makes me sad and it makes me angry and it dings my soul. Some times I think of my soul, that part of me that holds my hope for the world, as being wrapped in armor. I’m afraid that it can only take so many hits before it cracks open and my hope escapes. Most days, my day has sadness in it, most days my soul takes a hit.
I haven’t slept soundly through the night in almost four years, even in those rare times that I am not with Arden when we sleep, I still think about her. Last week my wife Kelly was out of town for business and the second she left I thought, “what if I don’t wake up tonight when I need to”... that was my first thought when she walked out the door. What kind of a horrid existence makes that your first conscience thought, in that moment? A life with diabetes. My day is consumed with type I, it effects my every thought, feeling and action.
We all (parents of type I kids) have the same fears, stresses and worries. Some of us, I believe, try very hard to keep the negative concerns out of our day to day thoughts. But with all blunt honesty, we are all just trying to keep our kids alive for as long and as well as we can. We are all beating back a tide of health concerns, both mental and physical. Our community was rocked recently when a little boy with type I passed away. He was by all accounts very well cared for, his death was an unthinkable tragedy and a stark reminder that it could have been any of us. You want to know what my day is like? Every night I tuck my daughter in bed and I think the same exact thing, “please don’t die”. Will that happen, probably not but it still may and it’s not fair to have ponder that every day. Like most other people’s, my day isn’t fair.
My every decision regarding Arden’s care is graded, her health hangs in the balance of my being able to properly understand and navigate a disease that is only partially predictable. Before you think, “this guy needs to be more positive”, don’t bother, I’m the most positive guy you’ll likely meet. However, there is a grand distinction to be made between being positive and being realistic. Being ‘positive’ is important and it plays an monumental role in the mental side of living with type I but ‘realistic’ is going to keep Arden healthy and alive longer. My mom use to say, “if wishes were horses, beggars would ride”. What’s my day like? Vigilant. Why? Because the day will come when type I gets the better of our little girl and I want that day to be as far into her life as possible. There is much that is out of my control but the things that I can effect, I will without fail, every minute of every day. I’m not counting on wishes.
Okay, enough of that, let’s get to the good stuff. No waiting in line at Disney. Without a doubt not having to wait in line at Disney is the best part of type I diabetes. I kid, well not completely, the no waiting in line at Disney perk really does rock... but there is more.
I may experience sad things in a day but I am not a sad person, nor do I think of my life or Arden’s as a sad existence. Maybe better then the Disney thing, is the perspective that type I has given me. I truly believe that you can’t fully appreciate the good when you don’t really understand just how awful the bad can be. You want real perspective, all you need is a chronically sick child and then you’ll have it. It trumps all other perspective. Until you find yourself hoping for your child to be cured, you don’t know hope. Until you see your child battle in a way that you never thought that a person, let alone a child could, you don’t know glory. Arden is strong. We probably all have the ability to be that strong but many of us never are. Arden knows how strong she is because type I tests her and I am grateful that she has that knowledge. I’m grateful to be able to just be near a person that is using that much of their capabilities. It’s inspiring, my day inspires me.
Until you experience the warm embrace of a community so connected by the most important bond anyone can imagine... you’ve not been moved. Diabetes parents have an energy about them, sometimes up and sometimes down but never alone. We all know what a bad day is like and we know that a good day is on the way, so we lend support, so that today’s bloody and battered can make it to tomorrow. Again, I am moved by the people that I’ve met since Arden’s diagnosis. My day moves me.
Once I had goals, they were many and oft driven by my age and perspective. I wanted money and success, luxury and relaxation. Today, none of that is important. My only concern is my family. If we lived on the side of a hill in a shack and we were all healthy, I’d call that a win. I don’t want or need any material thing that this world has to offer. I only want my family to be happy and need type I diabetes to be cured. If nothing else, my day with type I is enlightened.
To conclude, my day is a fuc&i*g mess but it’s mine. I own it and I’m making the absolute best of it that I can. Plenty of people have plenty of problems, type I is just ours. I don’t hide and I don’t quit, I believe that our children will gain the most normalcy through transparency and that openness is the best route to a cure. This was about as open as I can be... this is what ‘a day in the life... with diabetes’ is like.... for me.
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The following are archived comments from this post. You can post new comments below.
I worry all the time too (especially at night) about my granddaughter, even though my daughter (Julia's mom) checks her blood sugars through the night (like you do). It is always a constant worry because we love them so very much.
We too are positive and happy around Julia all the time. Therefore, when I found out about the front of the line passes for type 1 diabetics at Disneyworld (as you spoke about in your write-up), I could not wait to let Julia know. She is so very excited about this.
There is way too much sadness with this disease, therefore, when we find out about something wonderful, it does make our day.
Thanks again for your great web-site.
