Dear Carter

Last week, Moira wrote a post on Despite Diabetes which began with the following sentence:

DOC and others: A great young man named Carter is having a hard time and doubting he can rule the world with diabetes on board.

She asks for letters of encouragement in the comments, and as of this writing, there are thirty-six of them. In addition to my comment on her blog, I’d like to share my letter to Carter here, in the hopes that it might also inspire others who may be struggling with diabetes.

It’s only diabetes

The big news lately surrounds the announcement over the DRI’s “BioHub” and the social-media teaser that preceded it. You can read my thoughts on that series of events in a comment I left on the DiabetesDad blog. But this post is not directed at the DRI; it’s to the folks who feel they absolutely cannot wait for the true announcement that still seems just out of reach. Give it a read, and I’d love to hear your thoughts on the topic.

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As I surf the various online diabetes-related forums, whether it’s on JDCA’s Facebook page, JDRF’s LinkedIn group, or DiabetesDad’s blog, nothing distresses me more than the comments by forlorn parents and grandparents of children with diabetes. Usually, those comments read like a variation of the following: My beautiful Cameron* was devastated with the diagnosis of Type 1 two long months ago, and we desperately need a cure!! It kills me to watch my child suffer an eternity of painful injections, dietary restrictions, and being socially ostracized.  I mourn the loss of Cameron’s childhood every day!!

These kind of comments make me sick. Not because it’s unfortunate for anybody to be diagnosed with diabetes, but because the parents seem to believe there’s no hope for them to live a happy life. These comments are filled with sorrow and despair, and they suggest that the child is doomed to live a miserable life.  This message is for those parents:

DON’T FEEL HOPELESS! A GOOD LIFE DOESN’T END AT DIAGNOSIS!!

The new math: 11 roses is greater-than 12

Valentine’s Day used to be about adults who are romantically involved, adults trying to rekindle the romance, or teenagers who thought what they felt were really in love.

Six years ago, Valentine’s Day began to represent something new to me: children. February 14, 2007 is the day my first son was born, and the day that my priorities in life changed forever.

Imagine seeing your child suffering — dying — because they life-saving treatments he or she needs are not within your reach. Can you imagine it? I can’t. I can’t even bring myself to think about it. But to some, it is a reality.

That’s what the Spare a Rose, Save a Child campaign is all about. The whole idea is beautiful in its simplicity. You’ve probably heard of it already, but previous attempts to reach you were misdirected to your Spam folder (as Kerri’s email to me was), here’s the scoop: (you can read the description in long-form, including how to spread the word, here)

We want to help the Life for a Child program, sponsored by the International Diabetes Federation, which aims to take “contributions from donors [to] go to established diabetes centers enabling them to provide the ongoing clinical care and diabetes education these children need to stay alive.” Our idea was to take the typical “dozen roses,” so popular on Valentine’s Day, and save just one rose to spare the life of a child. “Spare a Rose, Save a Child” is simple: buy one less rose this Valentine’s Day and share the value of that flower with a child with diabetes in the developing world. Your loved one at home still gets flowers, and you both show some love to someone who needs it.

You can share the value of that 12th rose by using the shortlink to the IDF website set up as part of this campaign: http://bit.ly/SpareRoseSaveChild.  This program runs through Saturday the 16th although contributions, of course, will be accepted at any time.

If you’re like most guys — myself included — you won’t even think about buying your loved one a gift until 5:30pm on Thursday (I still get heat for not getting my wife anything six Valentine’s Days ago… hey, I was distracted!), so it’s not too late.  And if you’re not a guy, well, you can participate too.

I hope you will.

#sparearose

Angelman, diabetes, and self-worth

Recently, I’ve made a few references to my brother, who has Angelman Syndrome. He is a full-grown adult but is incapable of the most mundane of tasks.  But most of the time he is happy, for he is not capable of understanding that he has certain limitations (or so we believe).  He will never understand what a teacher he’s been to myself and my whole whole family, but his mere presence is an inspiration – a lesson on priorities and what is so important in life.  I’ve been meaning to write a bit more about him in a context that is relevant to this blog.  This thought process keeps keeps taking me back to something I wrote earlier.

Last year, a member of TuDiabetes (whose name I will not include in this post) posted a message titled “Guilt.”  This short but powerful message really struck a chord with me, and still resonates in my head to this day:

I feel guilty that I am alive and continue to be a burden to the people I love. They all deserve so much better.
I truly believe the world would be a better place without me.
Diabetes and all the side effects render me a useless waste of space.

–A TuDiabetes.org member

Addiction, Part II

­So, my last post was about a diabetes addiction; about the desire to have such a razor-sharp focus on every little thing that I do to my body and that it does to me.  About staying tuned in to every BG movement, for fear of straying too far off course.  But with all the little tweaks and fixes, my DPS (Diabetes Positioning System) that tried to navigate me through life was stuck in a perpetual state of “recalculating.”

While writing that post, I was already thinking about my follow-up, one on a different kind of diabetes addiction — or obsession (as I write this, I keep waffling between the two terms).  This time, I’m talking about an addition to/obsession with constantly talking, listening, reading, and writing about diabetes, whether through the Online Community or through other forums (but mostly online.  In my world, “other forums” is a very, very short list).