Most of the blogs I read are about diabetes, but there are a few others to which I regularly make the rounds. Among them is a blog written by the mother of a
boy man with Angelman Syndrome. If you’ve been following me for awhile, you know that my only brother has Angelman (or, to phrase it in a way I learned from that blog, “is an angel”).
And as a quick refresher on what this means, and I’ve blogged about it a few times before: my brother is 37 years old. He is unable to talk, read, or perform basic tasks (like getting dressed or using the bathroom) without assistance. He communicates by way of grunts, gestures, and facial expressions. He’s got the mind and behavior of a 2-year old but the strength of a grown man, and a hug can literally knock you to the ground. I watched my seven-year-old son pass him, intellectually, long ago, and my two-year-old is passing him in some ways now.
Anyway, this blog that I read ended with a link to a petition to the White House to increase funding for researching treatments and a cure for Angelman Syndrome. And that got me thinking. Not the treatment part (of which we could use all the help we can get, and hopefully put an end to the rotating cocktail of meds and side effects that he consistently uses), but the cure part. I asked myself, “do I want to see him cured?”
Life’s been hectic and blogging time’s been scarce, but I’ve got a few moments to share this quick anecdote:
On Monday night, I had pizza for dinner before lacing up the skates to help out at my son’s hockey practice. The pizza means I had an extended (dual-wave) bolus in action; the skating means I had a reduced temporary basal in effect. I felt kinda foolish, taking such measures which essentially cancelled one another out. But you know what?
(Maybe the message would be more dramatic if I had a photo).
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Meanwhile, please go read Sue from Pennsylvania’s post at Test, Guess, and Go. You may not think Medicare rules may apply to you, but someday they will. And as more and more private insurers follow a “standard” (i.e. Medicare), this could get worse before it gets better… unless we make ourselves heard! [UPDATE: link to Sue's post corrected!]
I made a couple of interesting observations this afternoon about how I position my diabetes supplies. Can you tell what do these three images have in common?
The urine ketone strip — not pictured (your welcome) — also gets used upside-down.
Perhaps it’s why I find this image, tweeted during last month’s Diabetes Advocates Forum, so alluring and appropriate.
Valentine’s Day means different things to different people.
Maybe you think about teenage romance and the high-school dance.
Or maybe you see it through more grown-up eyes: sparkling wine, smooth jazz, and/or wild sex.
Some view it as an opportunity to rekindle a fire that has nearly burned out after years of neglect.
Perhaps you’re a cynic, believing that February 14th is simply a fabricated holiday created to boost sales of cards, chocolate, and flowers. Maybe you feel captive to the holiday, making an obligatory purchase of said cards, chocolate, or flowers, rather than risk a terrible scorn when you get home.
Or maybe it’s a day of sorrow — remembering someone who you’ve loved and lost, or simply trying to find somebody to love at all.
But most certainly, Valentine’s Day isn’t about children, right? How can it POSSIBLY be about the children? The rugrats who always seem to find a way to abort any hope of a romantic interlude? When the term children is used in the context of Valentine’s Day, it often comes with another term: babysitter.
I see Valentine’s Day a bit differently. On the 14th of February in 2007, my life changed forever. On that day, I became a parent.
So, yes. To me, Valentine’s Day is all about the children. It’s about a love, a commitment, and an obligation towards that tiny little life who relies on you for so much.
It’s about those two little eyes that look at you for the first time ever, in complete innocence and complete reliance, saying Here I am. I submit my entire self to you for security, nourishment, and whatever else I need, for I can’t do anything on my own. It’s that first trip home from the hospital – trembling and paranoid that something could go wrong – because the stakes have now been raised. It’s a feeling … a feeling so powerful … that I can’t describe it in words. It needs to be experienced to be understood.
This is what I experienced on Valentine’s Day in 2007. And again, on an ordinary November day a half-decade later.
Now, with all this talk about Valentine’s Day, ten days before the fact, you probably see where I’m going with this (this is my literary pause – the transition from the sappy part to the scary part. Deep breath).
There is always a lingering possibility … a fear … that something could go wrong. That the unexpected happens. And that, when those little eyes meet yours, that you’re unable to respond.
Imagine looking at your child, sick and frail. Helpless. And so are you — also helpless. It must be the most awful feeling on earth.
Imagine knowing that one shot of insulin will make all the difference – at least for awhile. Imagine knowing that the insulin is out there, but you just can’t get your hands on it. Or worse, you can get your hands on it, but you can’t find a syringe with which to inject it. The thought alone scares the hell out of me. The thought of being helpless, powerless, as my child suffers is unbearable to me.
These scenarios happen all the time in nations like Haiti, Kazakhstan, and some others. These are the observations that Dr. Fran Kaufman relayed to us during the Medtronic Diabetes Advocates Forum last month. Often, we hear of it in broad generalizations, describing populations in places we couldn’t locate on a globe.
By now, you’ve no doubt read the Tweet-heard-(and retweeted)-round-the-world.
To me, Spare-a-Rose, Save-a-Child isn’t about putting a “minus-one” on the enormous tally-board that represents how many children fail to survive due to lack of insulin.
It’s about giving a child an opportunity to develop to his or her full potential. It’s about giving parents some hope. It’s giving these Type 1 children a legitimate reason not to give up. It’s about keeping families together. Give them the supplies and the education, and they’ll do their damnedest to learn how to use it properly.
You’ll just have to take that last statement on faith. I can’t back it up and I know there are some parents, in all parts of the world, who don’t show this limitless love for their children. I can’t figure out why — I just can’t comprehend it one bit . But I truly believe that most people are good people. Some even transcend good, and will want to give the child a loving home in addition to some vital insulin.
I trust you know how it works. Five bucks gives insulin for a month. Sixty bucks lasts a year.
Send the metaphorical twelfth rose to someone who needs it. Plant it. Nurture it. Just as the rose will blossom, so will the child. Just as new flowers will bloom and produce new plants, so too will the knowledge and wisdom of treating Type 1 diabetes permeate through the community.
One bulb can turn a field of dirt into a beautiful garden. One selfless act can transform a village of despair into a place of delight.
Do it for the children. I love children. Show them some love this Valentine’s Day.
You can participate by clicking the image below.
I know it’s important.
Believe me, I tried
To make something artistic
Linking diabetes with pride.
Just paint a picture;
Just sing a song.
For those labeled “creative”
It shouldn’t take long.
My grandpa could draw.
Excelled in Arts High, he recalled.
But the family gene that links us
Is not artistic, but bald.
But my circles are oblong,
My paintings all stink.
My hands don’t know precision,
Though my mind sure can think.
I can’t dance expression
No rhythm in these hips.
I can’t tickle the ivories
With these scratchy fingertips.
The rules were quite open.
Use clay or use paint.
But simple prose ain’t.
But words are my artform
Nouns are my brush.
I embrace punctuation.
Verbs give me a rush.
My attempts to make art
Drew a blank, sad to say.
It seems use of language
Is my artistic way.
Please forgive my disregard
Of the rules, clear they be;
For instead of drawing diabetes,
I just wrote about me.