Monday, March 4, 2013

Feeding Tube Awareness Week - Story Time!

Aidan and Megan did something really, really special for Feeding Tube Awareness Week!  They visited a local storytime and spread awareness the good old fashioned way!

Here's Meg, to tell you more...  

Sometimes what can be terrible about caring for a toddler is having to step outside of your comfort zone and realize, “This isn’t about me. This is about <insert child's name here>.” We are responsible for our children’s daily experiences, social interactions, and exposing them to the world – and the world to them. That is what Feeding Tube Awareness Week was all about; Aidan and exposing the world to him, to that which sets him apart from other kids, to his tube. 

Story time at the Perkiomen Valley Public Library quickly became a regular item on our “Things We Like To Do” list. Especially following the really disappointing start we had finding inviting places to go. The week we met Hillary, the volunteer who runs story time, Aidan joined the group to draw, read, do his craft, and eat a snack. Aidan ate the way he does – a little from his cup but mostly from his tube. Mothers and children looked, while trying not to stare, and asked the question, while trying not to offend. (Note: We don’t mind, really. We want you to ask. We want to tell you. We want you to understand this little boy is mostly just like your little boy but a tiny bit different.) After snack an amazing thing happened. Aidan was treated normally. The boys and girls ran and chased and kicked balls with Aidan just like they did with the others - but more importantly, mothers didn’t stop them. (We constantly find parents warning their children away from Aidan. Trust me, we get it, no one wants to be the parent whose kid breaks the “sick” kid, but that is exactly why we want you to ask.) Caroline and I looked at each other and smiled. We liked this place and these people, and we knew we wanted to be a part of it. 

As we were leaving that first day, we took some time to talk more to Hillary, who did ask questions and was a little shocked we were so excited at the normalcy. I mentioned to Hillary that Feeding Tube Awareness Week was coming up and asked if she minded if we could have the floor that day to educate these curious toddlers and parents about our life and Aidan’s feeding tube. She emphatically said yes. 

Feeding Tube Awareness Week was February 10-16 and in it’s 3rd year. This was our first year to participate.

After saying our hellos and getting out our crayons, Ms. Hillary handed out drawing sheets that said
“G is for GROW. Draw a picture of things that grow”

Lexie drew a picture of flowers while Brody drew a picture of trees.  Aidan drew a picture of... Well, Aidan drew a picture.

Then it was circle time for our story.  Ms. Hillary did an amazing job talking to the kids in a way they could understand what can be a complicated topic - even (especially?) for adults. She talked about how little boys and girls grow big and strong by eating nutrients they can get from eating healthy foods like apples, milk, and eggs…and some of our favorite foods that aren’t so healthy, too (like pizza!!). She asked how those nutrients get into our bodies:

“We eat with our MOUTH!” answered Drew.
“Yes, we eat with our mouths,” replied Ms. Hillary, “but Aidan has a special way to get nutrients into his body. Sometimes, when Aidan eats food it can make him sick so he has a special tube in his belly that helps him get his nutrients so he can grow big and strong, too. Today, I am going to read a story about his special tube.” 

As Ms. Hillary read our story , Aidan and I passed around our Tubie Friend, Puppy Pup, and Medical Me, Baby Aidan, so everyone could see what his tubey looks like. While looking at the tubey in Baby Aidan’s tummy, Drew asked his mom, “How does it get into his mouth?” She answered that it doesn’t and that it goes straight into his belly. “How,” he asked? Then I took out a bolus feeding kit and showed him how we attach it to the tubey and where we put Aidan’s special milk. Then Drew took a turn giving Baby Aidan another bolus feed. (I was grinning ear-to-ear. Aidan was eying Lexie, who liked Puppy-pup a little too much.)

Instead of a craft we played a very special game: Pin the Tubey on the Tubie. Our Tubie, Mr. Penguin, needed help finding the right spot for his tubey so he can get his nutrients, too!!
Charlotte was our big winner!!

After our game it was snack time. Aidan sat and drank Neocate from his cup while the other kids drink their apple juice from theirs. Moms pointed out that Aidan is drinking a special milk and that is why he doesn’t eat goldfish and raisins like them but that’s how he grows. (Under normal circumstances, I would have bolus fed him but we are having difficulties with Aidan tolerating his feeds lately - which is the subject of an entirely different blog post.)

Then the kids, having seen what they needed to see and learned what we wanted them to learn, did what kids do…they ran off to play. Just. Like. Normal. 

The other moms and caregivers that came to story time were really wonderful. They asked questions about Aidan, his disorder, how he was, what we’ve been through, how he was doing,…you know, the usual stuff. Then, happily, the conversation stopped being specific to Aidan and his disorder (we are happy to talk about it but we also want people to see he’s more than his disorder and his tubey, he’s a totally awesome 2-year old boy). We started talking about keeping our children safe, people we know with some food limitations and having a new perspective on that. (I let out a deep sigh of relief.)

Kids are easy, they aren’t prone to getting stuck over things. Kids rarely question why there isn’t cake at the birthday party. It’s the parents we often worry about judging us. What are they thinking? How angry will they be at the inconvenience? Will they be mad if we have a food-free party?
I thanked everyone, numerous times, for letting us come in and take over for the day and share this with them. They responded with, “No, thank you, for coming in and teaching us.”

…then I breathed another sigh of relief.

Team Shields Feeding Tube Awareness Week 2013: WIN!

Special Thanks to Mini Buddy for giving us Puppy Pup!  And to Medical Me for Baby Aidan!  And of course to My Tubey for the wonderful books!


  1. Great story. Maybe next year I can participate in a similar way. (we did just buy that book)Thanks for sharing!!
    ~chelsea (cpmentor)

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