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From Kate:

What’s in a beep? A high pitched sound that is often a reason for alarm and gathering attention in its relentless efforts to ignite a sense of emergency. That is what a beep means to me. I do understand that there are a myriad of other kinds of beeps. Like for instance many cars have beeps to let you know when you have successfully locked your car, a microwave letting you know when your reheated coffee is ready for consumption, as well as your phone can also use their beep to suggest someone is texting you. A beep is also sometimes put in place of a curse word on TV. So putting a beep in a particular context can offer comfort and emergency. All too often in our world, a beep signal can offer frustration, emergency, and comfort all at the same time. It can be quite maddening. 

Getty has many devices that offer her all kinds of support. Truth be told, there is no way Getty would have successfully gotten to 4th grade without the immediate and long term support of these devices. But they also come with their own kind of distinct and maddening beeps. 🙂 Let’s take the Joey food pump as an example. Getty has been exclusively g-tube fed since she was 6 months old. In order to give feed her, we use this device to feed her safely and at the rate safe fro her to eat. There is a distinct series of beeps when the unit is turned on. There is also a very loud, high pitched beep when the internal battery is low and the unit needs to be plugged in. And then there is another beep for…….clogs. Those god awful clogs. Her diet consists of many things. Many, many things. In order to make sure she is getting all of the calories and overall nutrients in her daily diet, many ingredients need to be contained in the bag that hold the food and run through the Joey food pump. From trial and error, we have finally and successfully found the right liquid consistency to get through the day without a clog alert. A clog alert is a loud and consistent series of beeps that do not stop until you have manually stopped the beeping. Once the beeping stops the time for remedying the issue of the clog begins. Is there a crimp in the line? Was the consistency of the food just too thick? And then how did the consistency get thick when I make this food EVERY DAY AT THE SAME MEASUREMENTS? Was the bag just faulty? Is the unit on the fritz? Should I just ditch this effort to salvage the bag or should I sit and figure this out? But if this is just human error and it is a perfectly good bag, I need to just figure it out. I only get 30 a month and if I throw this out, how am I going to fix the issue of shortage in the inventory? Maybe manipulating the bag a bit and trying to get the line to unclog might work, try that first before you give up. Well that didn’t work, where are the extra bags anyway? The closet, it’s 3am and I can’t see anything and I am literally sleep walking, where is the closet again? If this second bag gets clogged as well, I am literally going to through this unit through the window! Beep, Beep, @#$!% Beep. Fail! 

I appreciate all of the beeps, don’t get me wrong. Without them, even while sleeping right next to Getty, I wouldn’t know if her food stopped pumping. I would have been alerted by the excess amount in the morning and that would be too late to help recoup what nutrients and strength she may have lost due to excessive fasting. Our kiddos, especially type 1’s, cannot fast more than a few hours. They aren’t physically capable like most of us. Our kids can’t just fast. They have to be consistency fed throughout the day to keep hydrated and full. So the beeps are major indicators for us to know that something needs to be fixed and being able to spring into action is so crucial, but man, I am human, and the beeping can drive a person crazy. It can leave a person conditioned for a particular beep, even outside of the home. 

I can’t tell you how many times I have been out and about getting some air, for a temporary change of pace, only to be overcome with worry or dramatic responses to a beep. Like for instance, a cash register, who knew that would offer a negative, almost dire feeling dread, like someone’s life held in the balance when sitting in line to purchase clothing, but it has. Old Navy, please change your beep, it sounds like an alarm beep on Getty’s pulse oximeter and I instantly assume someone is desatting in the store and no one seems to care. Yep, its bad! 

The grocery store isn’t safe either. There are beeps for price checks, registers, scanners, and heaven forbid a forklift reverses in Lowe’s. It is maddening. I think for many medically fragile families, beeps mean something fierce and even while doing the best you can to get outside, to breathe hopefully non-germy air, the beeps are still there and it’s up to you to remind yourself that it is seriously unlikely that someone’s pulse ox went off and their oxygen just plummeted in Sephora, or someone’s Bi-PAP beeped in Foot Locker to let them know that their internal battery is low and needs to be plugged in, or that while eating in Chipotle, someone’s suction machine battery just went out. Nope, we are all just going to have to realize that, “Life has beeps, lots and lots of beeps.” Not a bad quote for really any kinds of adversity. 🙂 

Hang in their families. One day at a time. And in our case, one beep at a time. 

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