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One of those moments

Life is full of moments when you take a step back, tilt your head to one side, put on a ??? face, and think, ”really?? this is MY life??” And sometimes it's with a grateful smile, like "WOW, my life is amazing!" and other times it's I've certainly had plenty of both in the last 3 years but I have to admit that there have been a lot more of the latter. It's not that I'm not grateful, it's just that tube feeding lends itself to a whole lotta' weirdness.

Case in point, last night, a friend brought over some Neocate Splash for Raya to try. (It's another hypoallergenic drink that comes in little juice boxes.) She had tried it about a year ago and wasn't impressed but I thought it was a good time to try again. (meaning I haven't tracked down any more chocolate Neocate yet) To my surprise and delight, she liked the grape flavored one. She choked on it, probably because she was drinking it warm (gag) and has never taken a drink out of a juice box before but she ended up drinking the entire thing. Yay!!!

As I was helping her hold the straw in the right spot to get the last few drops out, I realized it was time for one of her meds. Then I realized that the pump was running. It had fed her 245 out of the 250ml feed. She had guzzled the whole 250ml juice box. 500ml in a stomach that can't tolerate a rate higher than 125ml/hour. Eek. I was afraid she was going to throw up, especially when she told me, "Mommy, I puked on the sidewalk." (while I was talking to the friend that brought over the Splash) She was kind of running around being silly (i.e. what she does when her stomach doesn't feel good) and then was laying on the floor on her stomach (the other thing she does when she doesn't feel good) so I decided to hook up a Farrell bag and relieve the pressure before anything came back up. I felt like I was dismantling a ticking time bomb. One wrong move and KABOOM. "Hold still, Raya. Don't move. Mommy's plugging you in so your tummy will feel better. Please don't puke. Stay off the carpet until your tummy empties out a little."

Of course she vehemently denied that her stomach hurt but she acknowledged that it felt really full. And rightfully so. Hardly anything came out at first so I went in the office to study. When Donny walked past her on his way out the door, he said the bag was filling up. I came back out a few minutes later when I heard her getting ice from the ice maker in the fridge to see this:
Holy moly!! That's a good 500ml plus a big ol' air bubble. She was happily chomping away on her cup of ice since her stomach was empty again. She looked at me and said, "Mommy, I just love ice so much!" I told her to finish her piece of ice and then put her cup in the kitchen and then I went back to studying. A few minutes later I heard her walking around so I went back in to see what she was doing, and that's when the "moment" happened.

She turned around to walk out of the kitchen and I was overcome by how unbelievably adorable my big girl is so I took her picture. (that's not the "moment" but I'm getting to it)
(and no, the tile in our kitchen is not really hot pink like it looks in the picture)
(then I hurried and turned the Farrell bag right side up because it was scaring me that she was carrying it like that) I gave her a hug and helped her get comfy on the couch so I could hang the Farrell bag on the IV pole and sloooooooowly feed it back to her. I sat down on the couch and looked at the picture I had taken and decided to post it to facebook with the caption, "If she was holding a teddy bear or blanket instead of a bag full of her own stomach contents, this would be cute." Then I thought to myself, "That is an adorable picture of my 3 year old HOLDING A BAG OF HER OWN STOMACH CONTENTS. For real??? Is this my life??"

Then another thought came: Is this HER life?? And it is. Her life includes things that the general population doesn't even know exist, and there is no telling how long it will be before those things are not part of her everyday normal anymore. I sat and stared at the picture for a few minutes, not really knowing if I should laugh or cry. I laughed. Sometimes I just can't believe what our "normal" entails. That's the funny part in this. ALLLLLLL of this is normal to us now, no matter how abnormal it is to the rest of the world. (remember this post? yeah.)

I feel like we're at a bit of a crossroads. Maybe more like the start of a transition. Up until recently, her life has been part of MY story. Taking care of her has been MY life. Now we are entering a slow transition where she will start to have the ability to take on her own story. She will be a more active participant in her own care and she will start to be able to express things from her point of view. Maybe it's selfish of me that I've always thought of her special needs as being a part of my story or our family's story, but that's the way it is. We are ALL living in this funny little world where it doesn't faze any of us to see her walking around carrying a bag of stomach contents or hear several young opinions about what she must have eaten for the contents of the bag to look the way they do. There are all kinds of not-normal normal in this world, and this is ours. The older she gets, the less "ours" her story will be, and the more "hers" it will become.


  1. Really enjoyed reading this - I have a 2 1/2 year old with a g-tube - I think I'm going through a similar transition - I'm not going to care so much about getting her to a "normal" state as this is our normal :) and it is wonderful!!! Thanks for posting.


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