Ive been thinking about this alot lately. As a D mom I speak of my experience and life raising a Type 1 child. No sleep, the crying, the lows, the highs, the 5am site changes, the uncooperative combos, the emotional stress it puts on J and I, well all of us. But one day is he going to grow up and unless a cure is found he will be an adult with type 1. He will be a Person With Diabetes not a child.
What does that mean? Well think about it. When When Justice goes low he feels awful. Like his body has been tormented and theres no end in sight. But I am here. His father is here. We run for the juice or tabs we rub his back when the nausea kicks in. What about an adult? What about the college student whos away from home and on her own? Or the single father who has to care for his kids all while his bg is steady dropping? Or the school teacher who cant grab her juice fast enough because a student is not behaving? Can you imagine? Trying to deal with the deabiliting low and manage it on your own? Shit. I can.
When Justice goes high its roid rage. Hes honestly mean, irritable and not well. He doesnt get the physical symptoms as much as the emotional . It breaks my heart. Actually 2 weeks ago at Disney on Ice he hit 380 and was out of it. Yelling, crying, balling up his fists in anger. He said "I feel like someone died and I cant stop crying". It was one of the worst days of my life. Imagine the mother whos bg is 400 while her kids are bickering and her husband isnt home. The man at work whos boss constantly tortures him but today his bgs wont come below 250, the young boy who just turned 18 and has football practice, but just wants to sleep. Coach doesnt get it. Kids dont get it. Boss doesnt get it.
I think one thing we as D rents fear the most is Death in Bed syndrome. I know I do. Thats why Dex or not I check J atleast 3 times I night. How do adults do this? How do they check at nght and manage that late night high or low? If J was high all night he will wake up slightly tired because of what his bosy has gone through but not because of lack of sleep. They must do it all. There is no one sitting up with an arm clock and meter ready to check them, or hellp them drink juice for that 2am 60, or draw up the syringe and do a site change because ketones are present. They do it themselves.
When illness comes into play with anyone it sucks! But with D we must be extra careful and stay on our A game. I check bgs, I hold Js head so he can sip soda to get his bg up, I check ketones, I draw up glucagon, I clean up his vomit and tend to all his illness and diabetes needs. A PWD must do this on their own. They cant slack because they feel like horse shit. They must keep on. Annd they do. With grace and poise. I never heard them complain or say how hard it is.
Its a very different dynamic to be sick or deal with a chronic disease of your own and watch your child suffer. A different kind of pain and frustration. And just because we may not talk about the other side of it doesnt mean it doesnt exist.
So to all my PWDs if I lived close to you, and you were having one of these days, Id gladly check your bg, grab you some juice or rub your back.
And one day when Justice is out of the house and I cant be there at that exact moment I pray someone will do the same.
*I did tell J that at any age when life or D gets hard i will always be there just like i am now. *