Is This a Joke?
“You will need to give your baby shots multiple times a day to keep her healthy. You will also need to poke her fingers and toes 10 times a day, account for every carbohydrate she eats or drinks, be on constant vigilance for low blood sugar, and learn how to manage sick days so that a simple illness doesn’t become life-threatening.”
You have got to be kidding me.
That’s the only thing that kept running through my mind as my husband loaded the cart to bring our things to the car while the nurses reviewed the discharge instructions with me. Five days earlier, my daughter arrived to the hospital PICU via helicopter, and now it was time to go home. I couldn’t even rationalize how we had come to this moment, let alone understand anything she was telling me.
Head nod. Forced smile. This must be a joke. It can’t be real.
When I first went to the pharmacy to fill a prescription for half-unit syringes, but the pharmacist didn’t understand why that little marking was so vital, I was sure he was kidding with me. Then, three months later when he told me that my insurance company wouldn’t approve more than enough test strips to check my daughter’s glucose level four times a day, I almost choked.
Ha. Ha. Funny.
When you take your child to a doctor, and they don’t understand anything about type 1 diabetes or the technology your child is wearing to manage it. When friends with good intentions offer crazy suggestions to “control” you child’s glucose levels. When teachers tell your child she will just have to wait to drink a juice box as her glucose level plummets to a dangerous level. When you sit on hold for an untold number of hours to facilitate an order of supplies. When you’re called away from work, because your child lost her pump site. When you sit down to a fancy restaurant dinner, and realize you left all your child’s supplies on the kitchen counter. When you’re up at midnight, 2AM and 4AM troubleshooting your child’s blood sugars…the daily grind.
Except it’s not a joke. It’s not a dream. It’s real.
It’s day in and day out, one number at a time, no vacations, no weekends off, and all holidays included. It’s there in the good times, and it’s there the hard times. It’s one more thing to think about when your brain is already full, and it never goes away when your brain can finally rest.
There are times we laugh at this life. When 123mg/dl pops up on her meter, we both get giddy. When she hollers across a crowded room that she’s feeling high, and it stops everyone around us in their tracks. My daughter drinks chocolate milk through a straw straight from the measuring cup itself! Last night, I referenced a number in conversation with my husband and he stared at me blankly. He didn’t understand the context of what I was saying, because he thought the number was referring to our daughter’s current blood sugar. We both busted out laughing when we figured the communication breakdown!
These moments are funny!
Type 1 diabetes never stops and rarely slows down. Its chock full of numbers, brain teasers and swirls of roadblocks. There’s a steep learning curve that feels overwhelming. There’s anxiety over things that cannot be controlled, such as an unforeseen low blood sugar or the risk of long-term complications. It’s a heavy financial burden, and it takes a toll on relationships.
In the big picture, type 1 really isn’t funny at all. But in a world where challenge lurks around every corner, it’s good to find a way to laugh once in a while.