Friday morning was the calm before the storm. I had a perfectly beautiful morning with a perfectly beautiful friend. Then in the afternoon the winds started picking up. My 11 year old was going to attend his first scouting campout. Thankfully, his oldest brother went along too, so I felt like he had some eyes on him and all would be well. This particular Scout Troop is well versed in type 1 Diabetes. J has blazed a trail.
Everything was fine.
J was headed out to a birthday party. Pizza, a corn maze and then sundaes at the birthday boy’s house. Not uncharted territory for our family.
Everything was fine.
L was left with my sister law and me. We took him to a fun Mexican restaurant and indulged his desire to order off the “adult” menu. When the waitress asked him if he’d like to keep the coloring page he waved it away and said, “No thank you. You know…I’m almost 10 years old.”
Other than my baby growing up too fast…everything was fine.
At 10:00pm L and I picked up J from the party. As we walked down the driveway to my car J says, “Oops. I forgot to bolus for that sundae.”
This is where the black cat crossed our path. Well, I didn’t actually see it…but I felt it. I shuddered a knowing shudder. I’m a big advocate for going to bed with no IOB. So as I checked my watch I realized it would be 1am before I would be sleeping soundly. Still…it doesn’t happen often with this one, so I accepted the reality without prejudice.
I’m super good at pretending everything is fine.
As soon as I walked in the door at 10:17pm, the text came from my oldest son.
“B is 84 with 2.4 units of insulin on board. What do?”
I replied that a Dex4 was in order, and that B should be checked 20 minutes later, and then again at Midnight.
At 11:00pm I hadn’t heard word. So I called my oldest.
I called him 17 times.
He didn’t answer.
My quandary was this: Did he do the check he promised, and just not update me? Probably. Maybe? But here’s the kicker. If he’s not answering the phone, and he’s asleep…and his alarm IS his phone. How is he going to wake up to said alarm at midnight?
And again did the first check take place as promised?
Suddenly. Things were not looking so ok. Or rather, pretending that everything was ok, wasn’t as easy as before.
But the winds for whatever reason decided to go all hurricane force on me when my little guy walks in and says, “I’m high. You’re not going to like it. It starts with a four.”
“Kid. It’s ok. Just tell me.”
“Did you bolus?”
“No. My pump won’t let me. The buttons don’t work. That’s been happening a lot. But don’t worry…they start working eventually. I’ll just lay in my bed until it does and then I’ll give myself insulin.”
“Okay.” I said knowing full well it’s all hit the fan but holding on to my plan of pretending like everything is fine.
So I kissed his cheek goodnight and then continued calling the oldest, over and over until I realized I’m probably draining his battery and he’ll have no juice to call me tomorrow. So at 11:51pm I send a private message on Facebook to the Scoutmasters son and ask him if his dad has a cell phone…and if he does could he call him and have him kick my eldest in the arse and have him check B.
Condensed version: He calls. No answer. The dad calls back. The dad says he’ll search the sea of tents to find my boys and make sure all is well. I wait 20 minutes. I get restless. I call, and finally the prodigal son returns. He was DEAD asleep and the scoutmaster had just woken him, finding him only because he could hear me attempting to call over and over again.
B is checked. A temp basal was issued for ultimate security. Done.
But as much as I want everything to be fine…everything is not fine.
Remember. L went to “lay down” to wait for his pump to work. I found him asleep, and I found his pump still refusing to believe I was pushing buttons. Nothing I did would make those buttons respond. Another BG check showed him to be 518.
In a perfect world I would have been able to call Medtronic and ask for a replacement. Alas. His pump is out of warranty. Only because I wanted to wait it out and see if the NEW Medtronic pump would be Okayed for kids under 16. Apparently, that’s not in the cards for us…and did I mention it was Friday night? Our Endo isn’t readily available on the weekends to put in the new orders for new pumps.
At this point, nothing is okay. I let the tears flow freely down my face as I calmly searched the cupboards for an old pump, a list of L’s basal rates, and the elusive AAA batteries. Once found, I reprogrammed the pump to L’s settings, although this old pump didn’t have the smaller dosing increments the new one does. But close enough…and surely better than going back on shots. Especially since I don’t have one bottle of Lantus in the house.
I set up the pump, gave my littlest the sweet serum of life, checked J’s blood sugar and gave him an extra bit of insulin, and then sat down to write this.
Everything is ok.
For a while anyway.
Now it’s almost 2am. And I’m wide-awake.
There is a blog post circling around the diabetes online community about the worst-case scenario happening to a family with a T1 child. It turns out the story might not be authentic. As I look around my living room at the aftermath of my day…strips, pumps, batteries, printouts from Doctors offices, ketone strips…I clearly see my reality. In fact, I see it all in 3D.
I’m not going to sugar coat it. It’s hard.
And as I type this with real tears streaming down my face, with real heartache in my bosom, with real children whose lives are on the line each and every day, I’m compelled to scream to the world…
But who will believe? Has the cynicism of society been deemed appropriate, or even necessary, because of a few bad seeds? Will eventually the Internet lose all validity resulting in valuable connections ceasing to lock into place?
Will we be left alone to worry if our neighbors are who they say they are? If a person is commenting only to uphold a certain persona? If statuses are crafted rather than simply written?
Is "real" something slipping through our fingers?
I don’t know the future of the Internet, but I have been sentenced to know some cold hard truths about this world…
And thankfully, some of those truths are:
1) There are more good people than bad people.
2) There are more real people than fake people.
3) There are more good nights than bad nights.
So if you’ll excuse me, I’m going to find my pillow and lay this swelly brain down and dream of fixed pancreases and a reincarnated husband.
Reality can bite sometimes, but my reality is always brighter in the morning.
That’s a truth. And that's a wrap to my no good, terrible, very bad day.