Right now, I am unable to receive any alarms or data that follows her so I am completely at will and trust to complete strangers who care for her up at camp. I hold my phone like a ticking time bomb tonight. Normally, it is my relief because I can quickly glance at a number and see a trend. It is my lifeline to keeping her alive and well. Not tonight for the past hour and a half. So I wait until the next scheduled check at 3am and pray that God will keep her at safe numbers. I know I won't be sleeping tonight. and as much as I deserve a fucking break, I know I won't get it. She deserves to be at camp with the rest of her class. Three whole nights away....
What people don't understand is that the human body is truly a miraculous thing. They don't understand this until they find they are with a disease or illness that will never go away. My daughter's pancreas decided to bite the dust because of some unlucky cards dealt. And because she is dependent on synthetic insulin to be injected into her body to keep her alive...well, the body becomes not so miraculous with an imposter. It becomes out of synch, no longer the fine tuned machine functioning on it's own.
Night times with this disease are the worst. Sometimes her body reacts to the insulin perfectly and everything is in check and she sleeps through the night. Most times lately, alarms are going off in the middle of the night because maybe her own growth hormones are interfering and she is going dangerously high. The slow death...the kind of numbers that can cause retinopathy, neuropathy, and a slew of other deadly complications later in life that I cannot even say out loud. These are the things I think of when those numbers go too high.
Some nights, the insulin dose is too much, or her body is churning full speed ahead and she comes tumbling down....down, down....reminding us how fragile life is and how important it is to hear those alarms and react. Dead in bed...it's a thing....so help me God, I will not let this happen to my girl.
And so I sit here in the dark downstairs mindlessly typing on this laptop knowing tonight will be another notch in my sleepless nights....all because of shitty wifi at a camp.
She has never even been to a sleepover (not that I am a fan for regular mom reasons) but literally...what parent would volunteer to be her pancreas for the night? She rarely even has an overnight with family. It is not for the faint at heart. You have to be on your game, ready to respond even if it's multiple times during the night. I wouldn't volunteer if it wasn't my kid.
But she deserves to have what other kids have, some normalcy: three nights away at camp with her class. And I will sit here until that 3am check comes through, and after, maybe I'll get a few hours of sleep before I am texting everyone up there on going through the technological roll call & getting things back online.
I miss my sleep, and I don't know if I will ever get it back....at least until they find a cure. I know it's out there, and at these hours in particular when I don't sleep, I wish all the people in the world would want a cure for this disease as badly as I do. She deserves to be at camp, and I deserve to sleep.
I miss my sleep, and I don't know if I will ever get it back....at least until they find a cure. I know it's out there, and at these hours in particular when I don't sleep, I wish all the people in the world would want a cure for this disease as badly as I do. She deserves to be at camp, and I deserve to sleep.
