Food for Thought

cake boss1Most children with Rett Syndrome, LOVE food. FOOD, FOOD, FOOD must be their mantra. When Katie was little she’d throw a BIG fit if someone new came to watch her, until I figured out if they fed her before I left, then they were her friend.

There are some funny stories surrounding food I can tell-the time she snagged nachos from a guy walking by at the fireworks one 4th of July. (He was a good sport) or the way she eats cake-she can use a spoon and fork, but ALWAYS picks cake up in her hands, lol. And if there’s a cute boy around, who KNOWS where that food is going to end up, most likely slowly dropped from her mouth in a funny, yet somewhat disgusting, attempt to get attention.

But food is a two edged sword-a Rett parent’s friend and enemy. While it’s been a great motivator for Katie over the years; still she almost needed a feeding tube when she was little.  At that time she ate six to seven times a day! Yet, still the weight came off. Katie is very lucky it turned around. And just this past summer she lost a LOT of weight for an unknown reason, refused food and drink, giving way to an 8 day hospital stay. Again, luckily she started eating again, but it’s been difficult to maintain her weight.

For some girls, they become heavy, obese even. Right now, I bet some parents are staring, open mouthed at the screen. Yes! Obese. Katie is classified obese. Want to know something, I don’t give a damn.  When she was about six she weighed 32lbs. This drastic weight loss or failure to gain weight is a common symptom in Rett syndrome.  And that’s why I don’t give a damn. I want her to have the weight to lose. If she’d been regular weight and went through that patch last summer, she would’ve been severely ill and she’d have been in the hospital a lot longer than 8 days.

Sugar apple made by Debbie Lancaster, Katie's sister

Sugar apple made by Debbie Lancaster, Katie’s sister

But, that takes us to the opposite side of the scale-underweight. If only an apple a day, kept the doctor away. Being underweight, unable to gain weight and losing weight; this is just one more fear of Rett parents. And there are a myriad of reasons for this. Some girls can’t chew. Some girls can’t swallow. Some girls aspirate food, risking pneumonia. Some girls can chew, swallow and don’t aspirate and are still underweight. None of this is fair. Not by a long shot.  And do you know what that leads to?? Surgery and getting all their meals through a tube. In the end, though, this is what will save their lives; And it will be a beautiful life, a worthy life, a life filled with love and joyful moments.

But, oh, what they are missing- crunchy, salty wonderful potato chips, pizza, Thanksgiving Day feast and Christmas dinner, pie, juicy, dripping watermelon, birthday cake. Think how it is when you go to a restaurant and you get steak and that first bite, it’s like a little piece of heaven, or when dessert comes and it’s homemade strawberry shortcake with real whipped cream and you can’t wait to immerse yourself in the luxury of it all. Yeah, some of our kids are never going to know that, they just get formula through a feeding tube, which they don’t even get to taste. That just sucks.

But, a cure/effective treatment is close at hand and I hope that all the little ones just getting diagnosed all grow up able to eat at the family table, get into food fights with their siblings, say “I want chicken for dinner” or “I don’t want meatloaf” and are able to embrace the wonderful flavors of the world that so many now are denied.

Just a little “food for thought”.

M. Lancaster

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3 Responses to Food for Thought

  1. Nicolas says:

    Can you imagine what the problem is when you have Rett syndrome, and you were born in the country of gastronomy, France ! What a pity not to know the taste of foie gras, all our wonderful cheeses and fine wines… I remain hopeful that the future of our girls will be full of these pleasures !

    • melelllan says:

      Nicolas, you made me chuckle, but yes, I can see how that would be truly awful. But, I can see where this statement might start a fight with Italy. ; ) But in the end I think all would agree wherever are girls are born we hope they get to taste the pleasures of French cuisine 🙂

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