Thursday, February 10, 2011

A Lot to Swallow

I linked a post from Nextcourse yesterday which featured Maggie and the program they sponsor at her school. I received a lot of comments from various sources asking questions and I need to set the record straight. The person writing the post is not the Chef in the classroom and has never actually met Maggie. Not surprisingly, then, the post wasn't 100% accurate but the errors did not matter for the purpose of her post. Maggie loves Chef M and that program, and the tastes of food she has experienced have been very positive experiences for her, but this is not her first taste of food.  I will also say in the spirit of full disclosure that there is NO WAY Maggie typed in that she wanted cinnamon, but she likely indicated "yes or no" when asked.

Maggie has had her feeding tube since the day she was born and with the exception of a trial period of about 1 month, has always received 100% of her nutrition through that tube. That doesn't mean we didn't try to get her to eat by mouth. We tried and tried and tried, but it was not to be. Swallowing is a very complex motor function,. We all do it automatically, but with Maggie there are no automatic motor movements. Everything is deliberate and comes with great concentration on her part. If you try to concentrate on your swallowing, you won't be able to do it.

Test that. Try to swallow five times in a row right now.

Many kids with Cerebral Palsy figure it out, some don't and need feeding tubes. People without cerebral palsy need feeding tubes for other reasons. In Maggies' case there was far more than her motor function to deal with. She was born with her esophagus in two pieces. That had to be surgically created and, while the surgery was amazing, the surgeon can never do as good a job as nature when it comes to function. When this problem was added to her multiple other gastrointestinal problems it just wasn't going to work. Maggie's body needs a TON of calories to function. She could never eat enough calories to sustain her needs.

But we did try. She could never do liquids, but she was able to eat pureed baby food. Applesauce and plums was her favorite. The first time I got her to eat I thought we were on our way. But she would get sick and forget that skill and we would start over. Eventually we gave up any effort at nutrition by mouth and went only for tastes. As her respiratory issues got worse, we stopped that too because she seemed to get overwhelmed by the saliva that food created. Besides, she was allergic to so much stuff, it was hard to find something interesting to try that was soft enough but didn't have dairy, eggs, peanuts etc. We always give her licks of candy canes, which she absolutely loved,

Now she is bigger and stronger and more body aware and I am delighted she has this opportunity to try new things, especially with all of her friends. Her nurse is with her and if she gets overwhelmed, Nurse Janice will stop it. But that doesn't happen because everyone is careful and aware of her allergies.

Also to clarify - Maggie does not miss eating. It is not cruel to have her in cooking classes when she cannot eat. She loves it. Remember, she does not have the pleasurable connotation with food that most people have. She experiences hunger and requests food. In fact she "eats" every two hours. She is satisfied after a feeding, but for her there is no connection to the oral act of eating. She cracks up when she sees the tube and the can of "medical food" because that is what satiates her.

It is difficult to remember, sometimes, that everything about Maggie's life is different. It's difficult not to overlay our own values and concerns to her situation. But it doesn't work like that. Maggie is not only marching to her own drummer, most of us cannot even hear the music.

For those seeing it for the first time. the picture above is her Chef Halloween costume from a couple of years ago. Steve made the stove to fit over her wheelchair.


  1. That's a terrific Halloween construction/costume. I think it may even beat the year Amelia was a pumpkin in a (surrounding the wheelchair) pumpkin patch, pushed by her school aide as a scarecrow. And Maggie's twin enthusiasms for both what fills her belly and the cooking classes of course make sense in the Maggie World.

  2. My favorite sentence: "It's difficult not to overlay our own values and concerns to her situation." I am continually humbled by this with my own daughter, Sophie. Just when I might despair or be in a funk about something -- like school or her happiness -- I am reminded in some inimitable way that she has her own life and is living it.

    Thank you for your wise words. And I remember that costume of Maggie's. It reminds me of when my mother made some elaborate costume for me back in the seventies: cornstalks in a field.

  3. I've been lurking for a long time but finally decided to delurk today. I am 18 years old and have CP....I think Maggie is great and would love to meet her someday. Her world is different, as is mine. And our worlds, though similar, are different from each other. Maggie does not miss eating because she never ate the way most people eat. I do not miss being able-bodied because I never was able-bodied. I am wholly comfortable in my own skin as I'm sure Maggie is as well. Our worlds are different, but bloggers like you shed light on our unique worlds. I love your blog!

  4. Hi Spaz girl, I'm glad you decided to unlurk! Welcome!


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