For more than three years I've posted about our experience living with Type 1 diabetes.
About the incessant highs, the dangerous lows; about the long nights and the early mornings.
And I've come clean about the fear.
Today, I'm just tired-- and more than a little hoarse.
Even so, today is too important a day not to post.
Because the voices of those living with Type 1 diabetes far too often go unheard-- drowned out by the cacophony of misperceptions coming from the media, from those who once had an Aunt or Uncle or Grandfather with Type 2.
From folks who think they know.
Or worse-- don't care to learn.
It's maddening, really.
When so many around you have no clue about something that has such a profound impact on every aspect of your child's life.
Something that could kill him.
So today we're all raising our voices about Type 1 diabetes.
A disease with no cure.
A disease that requires insulin injections or boluses, careful monitoring and emergency preparedness.
Each and every day.
With all my heart, I hope people are listening.
Monday, April 14, 2008
Friday, April 04, 2008
I'm lying in bed looking up at the ceiling-- only I can't see the ceiling because the room is pitch black.
He was crashing down at 11 o'clock, but two glucose tabs pulled him up 15 minutes later-- to 132. Then he ate some cheese crackers...
That ought to hold him.
I roll over on my side.
He's got no insulin on board, and his basal rate is pulled back 30% for the next couple hours.
He should be all right.
But then I'm on my back again.
This is how it goes.
Until 1 am-- the next check.
Leaning over him, I pray silently for a mid-range number. 120s would be good, but if he's a bit high-- well, that would be okay too.
My heart sinks.
He's coming down again-- not as fast, but still.
No insulin on board, a lower basal rate... why is he dropping again?
I take out his pump, extend his temp basal another four hours, and -- as usual -- struggle to get the pump back in its case.
Though Ryan will check him at 3 am, I've got a bad feeling. So when I return to bed, I snatch up my alarm clock (an old silver cell phone)-- and set the thing for 30 minutes later.
Sliding down beneath warm covers, I am so ready to drift gently to sleep-- even if it's just for half an hour.
But I never do.
Just before my alarm is set to go off--I'm squeezing yet another of my son's calloused finger tips. The blood doesn't come at first, not until I rub my thumb up the front of his finger, repeatedly (something I fear will wake him, but doesn't).
Should have given him some glucose.
Grabbing the plastic jar sitting on his nightstand, I unscrew the cap, and pause.
How many? If I give him too much he's gonna have a huge spike-- and then we'll be chasing the high all night...
Well, two bounced him right back up when we he was dropping earlier-- and he's not falling nearly as fast.
I fish out two large, pale-orange tablets-- and pause again.
"Joseph," I whisper, "I need you to take some glucose."
Without waiting for a response, I gently stroke his cheek, and for a moment just look at his face -- and at the headgear firmly attached to it -- then take a deep breath before maneuvering a tab between rubber bands and metal.
No words, just a low, muffled "crunch" as he mechanically chews each tablet without ever opening his eyes.
Then I pull myself up and walk heavily back to bed.
I'll give it 30 minutes.
One more poke, a snack, and then-- sleep.
This time when I take one of his hands in mine, he pulls it roughly away -- shoving both his hands deep beneath the covers -- eyes still closed.
When I reach down and take hold of his left hand again, I bend his arm to make that hand floppy-- to lessen the resistance. Then I prick the tip of his index finger-- and immediately, he yanks it out of my grasp, smearing blood in the process.
Thankfully, before his flailing left hand disappears under his blanket, I manage to grab hold of it. But when I raise the loaded test strip to his index finger -- no matter how much squeezing and rubbing I do -- I can't bring up any more blood.
I have to poke him again.
Suddenly, anger and sadness erupt with such force I have to move away from my son.
Why does he have to have this thing? Why?! Poking and poking and poking my child with a needle every damn night!
I sit on the floor, shaking.
Until that internal alarm sounds, and I can't sit there any longer.
Wiping a damp cheek with the back of one hand, picking up the lancet with the other, I return to my son-- and prick yet another battered fingertip.
Should have given him four in the first place-- but damnit, he wasn't falling that fast.
I watch him as he dutifully chews two more glucose tablets.
The whole time, all I want to do is go back to bed.
To just sleep until morning.
I return to my bedroom and set my alarm.
For 20 minutes later.