Tuesday, May 25, 2010



We've been venturing out more, the kids and I. Probably long overdue, and definitely a breath of fresh air, this new found freedom. Longer feeding schedules, less naps, beautiful weather, and a more independent big brother are just some of the reasons. We've had outings to groceries, and parks, playgrounds, and restaurants, and almost all are met with some inquisitive comments, or at least looks, about Lilah or her 'stuff' (i.e., her fancy stroller or her feeding tube).

I took the kids to the Chick-fil-A playground the other day (and I would share the details, but it's still too painful to talk about. haha) and I had to feed Lilah while Garrett was playing. Now, when I say 'feed', I mean, give her a G-tube feeding and I've never actually seen someone do it in public. It's not gross, or disgusting, and really not even that 'medical' and maybe it's an accepted social taboo, but we go for it anyway. I think she should 'eat' when others are eating and I'm not self-conscience about it at all. And I'm pretty sure she's not either.:)

Anyway, Lilah was the hit of the playground. Seriously, it was like a celebrity showed up for an impromptu concert. Children were swarming around her like little bees--just to get a look at her feeding tube. It was really sweet....they were so inquisitive and pure in heart. Those kids were just interested--not sad or sorry or weirded out. And Lilah loved it. Here were some of their questions:

clearly, not my baby. mine is asleep, so this cute button with the button will have to do.

What is that thing? It's a special kind of feeding tube, called a G-tube that goes right to her stomach.

Why does she have it? She can't swallow well and this is a safer and easier way to feed her. It has helped her gain weight and get stronger.

Where did she get it? The doctor put it in during a surgery.

What do you put in thItalicere? Special milk, kind of like what's in a baby bottle.

How does it go in? Gravity, have your mom explain that one.:)

Does it hurt her? No, but she can feel it and sometimes it feels uncomfortable.

Does she eat anything? Yes! Crackers, Goldfish, strawberries, Cheerios, Puffs and Cheetos.

Some of those parents apologized later for their children, but it was great! I never want to pretend she's not different or even try to minimize those differences. As long as situations are respectful of Lilah (e.g., I'm not down with dressing the 'special' child up as class clown), then I love sharing who she is.

4 comments:

davidpburch said...

good for you! I don't think it's taboo - but maybe rare, which creates immense curiosity. I love that you answered the kids questions. And of course she was the hit - she's awesome!
:)AnnRose

daisyeyes said...

all year long I've had a little boy in my class that was tube fed and everyday when I would take him up to the clinic to get fed the kids would ask all the same questions with the same simple curiosity. If only we as adults wouldn't be embarrassed by our curiosity and would be willing to accept the difference, uniqueness and beauty in all of us...irregardless of ability.
God is writing such a beautiful story through the life of Lilah and I've already been so blessed to be a small witness to it.

Cade and Cora said...

I think that's so awesome! I love when kids ask about things that are not something you see everyday. I always try to talk about and explain medical or physical differences to my kids because I think it makes them less "mysterious" and scary. Kids totally get it and if you act weirded out, they will too! I think you're awesome for answering the question.

Jessica said...

thank you for the 'lesson', and I think it's awesome you 3 are out and about! good for you!