Esmé is eating.

With her mouth.

In all honesty, my mind is completely blown.

Reader, I’m not sure if you know that she has done this before. About a year after her feeding tube surgery she started taking about 1/4 of her calories orally. I can remember making plans for her tube to come out within the year–but the seizures came on strong after that and she just sort of stopped eating by mouth at all.

Until the last three weeks.

Obviously I know that she might stop again–but for right now I am enjoying feeling so positive about this new development. It gives me what I think is a realistic hope that she will be able to enjoy the sensory and social experiences of food. I am not at all concerned about whether or not she will eat all her calories by mouth–just that she will enjoy what she can eat by mouth.

She has started to explore a wide variety of foods–things like goldfish crackers, fruit chews, and freeze-dried fruit she can eat in a food net, which she holds all by herself. She is enjoying tasting a number of “baby” foods as well, which I call sauce (banana sauce, chicken sauce, etc.), because she is most certainly NOT a baby so the food she eats is certainly NOT baby food.

Not long ago when presented with a spoon Esmé would turn her head away, retching if she could so much as smell the food. Now she sees the spoon and reaches for it, opening her mouth wide. When I take the spoon away she is often demanding “mah” (more) before I have time to fill it again.

The first few times this happened I sat there slack-jawed wondering what to do with a kid who could do this.

You see, I constantly find myself fascinated by what children Esmé’s age and younger can do. Just the mechanics of them sitting up–let alone standing, walking, running, and jumping–seems so improbable to me. But due to Esmé’s history nothing fascinates me more than what they can do with their mouths.

It is hard to explain how terrifying I find it to watch a child eat. The coordination required to eat safely–to move food around, to appropriately mash it up, to swallow without inhaling at the same time, to allow the food to pass over the back of the tongue in one coherent collection without gagging–to me this is nothing short of a miracle. When I watch kids eat I cannot help but look for signs of them aspirating. Once my one-year-old neice struggled with a piece of food–the way I am told one year olds do–and I had to leave the room and cry afterward because I was so terrified.

Until recently, the idea of Esmé ever really eating anything filled me with more fear than I care to explain. But I am trying to trust in her ability to know what is within her means. When she was aspirating she didn’t want to eat…so we can trust that her desire to eat now stems from her comfort. 
Of course I know where else it is coming from–when she goes to school she eats with her classmates. I have no doubt that this is influencing her, just as it appears to be influencing her physical skills and attempts at vocalizing…all of which are intertwined in surprising ways. Eating requires the core strength to sustain a posture conducive to eating. It also excercises some of the muscles involved in verbal acuity and sound production. 
And I guess in some ways this is part of what I find the most exciting about her advancements…the potential for speech–the hope that Esmé will someday do that other thing that kids do with their mouths: speak with me.
The more time I spend with her peers at school, the more this becomes my deep desire to hear her voice tell me the absurd and funny things I know she thinks about, to tell me what she wants and needs, to demand, “Maman, more peaches and banana sauce please. Now.”

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