You don’t have to ask Rae about her backpack, or the tubing sticking out underneath her shirt, or even about her gtube for her to show you her stomach pridefully. I’d say she flashes her belly, with her little plastic mic-key button 20 times a day to anyone and everyone.
But lately, as the pang of the reality that it’s not coming out anytime soon is more obvious and diagnosis seems more likely to lead to the permanence of the tube I’m really struggling. After over a year of tube feeding, going from NG tube, to PEG, to Mic-key button its not the tube that I worry about. And going from night feeds, to bolus feeds, to continuous feeds, back to night feeds and then back to continuous feeds, and switching feeding pumps, it’s not the schedules that I stress over. And spending hundreds of dollars every month to buy Rae’s formula, ordering medical supplies month after month carefully calculating the number of bags, syringes, extensions and back up supplies on hand, it’s not the money or the insurance coverage I worry about anymore.
But what my heart is aching with more and more is that one day she’ll understand the rude stares, the insensitive comments and feel the gut wrenching pain when someone says something flat out mean to or about her.
I know how this feels because I’ve dealt with it for the past year and a half. I know the stares, the well meaning curiosity that comes with an obvious difference between her and other kids. I know the comments “Well, why don’t you just feed her ice cream?” “When’s she getting off the tube?” “She looks perfectly healthy!” “Have you tried [x, y and z]?” “You should have her tested for food allergies!” they’re all well meaning advice and comments. But I feel pried to explain the past 2 years of Rae’s life and history to people who I don’t owe any of that personal information to (Which I realize is kind of ironic I feel that way in person yet I’ll write to hundreds of strangers on the internet about every appointment.).
For the first time 2 weeks ago though I heard someone say something just flat out mean about Rae’s tube and my heart has been aching ever since.
It was actually someone close to us, who see’s Rae a few times a week. She is only 4. Now obviously she didn’t know she was being hurtful, but when the words came pouring out of her mouth at a playdate saying “Look at Rae’s tubie. Look at it. It’s so funny. It’s so funny looking!” as Rae lifted her shirt, pridefully unaware. I felt my heart sink into the pit of my stomach.
I’m not a stranger to being the victim of harsh words and insensitive comments, from someone offering to “mentor me” because I clearly am a hot mess of a woman and need all the help I can get, to someone asking me what Rae’s life expectancy is (still not over this one), to being told I have a big mouth (I mean, that’s true). But for some reason, this comment about Rae felt so much worse than anything that had ever been said about me. And let me be clear, her mom jumped in and explained we don’t say things like that and that Rae’s tube is great for her and helps her so much and was completely 100% on it to make sure she knew that wasn’t a nice way to talk about things that are different on people.
However, it just has me thinking, every day, several times a day, that if someone who sees Rae several times a week, has known Rae with a feeding tube for most of her life and she can still let something slip that hurts me this badly, I can only imagine how much worse it’s going to hurt Rae in a few years.
I do everything in my power to explain to Rae and Little S that her tubie is so important and special, but I know one day she’ll probably realize it’s not so cool after all. Fortunately Little S gets it (as much as a 4 year old can) and is always telling Rae how pretty her tubie is and how strong it makes her. Big S and I started telling them both this from the minute she had the NG placed. And we have a book about a tubie, a Minnie with an NG tube and a cat with a mic-key button. We buy princess backpacks and gtube pads and I color Rae’s syringes for bolus feeds to make it more fun for her.
Right now, she doesn’t get it. She knows she has her tube “to make her strong” we say on days she screams about putting on her backpack or when she hears the sound of her pump turning on. That’s the worst she knows of being different. And as much as we hype up how special and beautiful it is, one day that won’t be enough. One day someone will say something and she will hurt. And when that day comes I don’t know how I’ll deal with it.
I’ll probably run 10 miles, ugly cry and write a blog post like I always do.
But I guess for now I should enjoy the beauty of her little light shining so brightly and proudly. Enjoy every flash of her stomach and the awkward questions that follow, because there could come a day when she’s ashamed of the thing that makes her the happy, energetic, girl she is today.