Feeding tube awareness week '19
HAPPY FEEDING TUBE AWARENESS WEEK PEEPS!
man! it’s here again! this is a week celebrated by so many people- moms of newborns, teens, and adults. people who have had their tubes for years, or who just got them yesterday. these are devices that save lives and provide hope. machines that feed. literally, pieces of plastic and metal that give people fuel to survive.
these feeding tubes give people access to medicine they can’t swallow, water they can’t drink, and i’ll probably say this 500 times in this post, but FOOD THEY CANNOT EAT.
i remember when my mom got off the phone the day they told her i was gonna need a tube. september third. we had tried everything, done every kind of test twice, and i hadn’t eaten a meal in months. i was sitting on her bed, my dad was out of town, and we both just sat, frozen. what were our lives about to turn into? what kind of kid was i about to be? what kind of sign was this? was this a nugget of hope, or a sign of death?
after that phone call, i never went back to school. we scheduled the procedure for the following week, withdrew me from in-school classes, and called to God for his hand on our lives as we went through this big adjustment. we were walking into the dark, crying everyday, unsure what questions to ask or who to confide in.. scared.
i can’t even write on here and tell you we’ve figured it out yet. i say we, because it’s me and my mom. it’s always been me and my mom. she helps with everything and is as close to being “tubed” as someone can be without actually having one. and we still struggle everyday. we still stare at things sometimes and say “is it… supposed to be that color?” or “hey mom, i’m not really sure what’s happening here so i think something may be wrong?”
google has saved us. nurses have annoyed us. and my doctors favorite line these days is “keep her comfortable.” and through it all His hand has been on me.
this year He’s given me a community online of girls with tubes. some are healthy, some hurting, some recovering & some dying.
we all hate restaurants just the same. we all smell and poke at other people’s food because we’re desperate for some of our own. we know the frustration of getting stomach acid on a cashmere sweater, and not being able to wear high waisted anything. we talk about hospitals as if we vacation there for the summer, & we all know the pain of accidentally hooking our lines on kitchen drawers… ohhh that terrible yank.
we’re all too familiar with the post-feed nausea, and some of us have been unfortunate enough to experience the hospital-forced bolus feed.
Lord, help us.
feeding tube awareness week isn’t something i really view as a legitimate “awareness week”, but more of an, eh, appreciation week? not for the tubes specifically, but the people who have them. the people who suffer from having to have them. the people who hurt without them, or because of them.
one time i told someone about my tube, and they gave me the awkward response of, “oh wow! i’ve always been interested in alternative ways of eating!” haha. i don’t know how i feel about that, but if you’re also “interested in alternative ways of eating”, this is the week for you!
i took these photos in a moment of bravery. a morning of strength and confidence. this week i’ve been stressing over whether i should post this. is it too much? will it make other people uncomfortable? am i being too vulnerable?
but then i have to counter those questions. would God want me to hide my testimony? should i be ashamed of my story? of my stomach? of these scars?
this tube has changed my life. i have a hard time deciphering how much it’s helped / hurt me, but i know having plastic poking out of my torso was part of God’s plan. so i try my best each day to embrace it.