It seems we’ve entered into a new phase of life in our household; Nik has, apparently, gone from not interested to ravenous as a pack of teenage boys in a matter of days. It feels like my day —which used to revolve solely around shuttling Nik to his various therapy appointments, playing with and teaching Nik things like how to put on his shirt —now revolves constantly around food.
If I’m not preparing the next meal for Nik —a fairly labor intensive process thus far, requiring grinding of foods and mashing and mixing of flavors to appeal to his indiscriminate palate but which will also provide balanced nutrition —then I am shopping, cooking, thinking, planning, researching, and feeding the child. Toss in doing mostly the same for my husband (though he’s quite capable of feeding himself, thank goodness), then you can begin to understand why I feel like a junior restaurateur. Oddly enough, I did a stint as a restaurant manager in my long ago twenties but that’s a story for another day —or not.
Still, I can only post so many images of my child stuffing his face or so many twitter posts about how much Nik eats in a given meal. It gets old after a while. Fortunately, we have not yet reached that point! Soon; I promise. But for now, allow me to revel in the glory that is my son’s ever-increasing appetite and advancing oral motor skills.
It’s only been a week since Nik started eating again. Sure, he’s been enthusiastically licking and slurping tastes from a spoon and sipping from his sippy cup for a while, but we’ve graduated to the level of actual consumption. Nik is now averaging roughly twenty to twenty-five percent of his daily nutrition by mouth! Today alone, he consumed nearly seven ounces of food by mouth at lunch.
Not only have we achieved a consumption of notable quantities, we’ve begun the next phase which is acceptance of the spoon when presented in a “typical” fashion. Yes, we still have to turn the utensil so Nik can take the occasional lick but he is cooperating more and more with accepting the spoon and with actually closing his lips around the spoon to clear it.
Some of you may wonder why that is such a big deal or why it’s taken so long to reach this milestone. If you haven’t experienced it, it’s difficult to explain in an adequate fashion but I’ll try:
Imagine if you spent a very large portion of your earliest days of life in this get-up.
No opportunities to learn to suck or swallow, no way to actually close your mouth completely —to even feel your lips touching together— and no way to move your tongue in any manner save for rubbing the very back of it on the tube stuck in your tiny throat.
Then, once you’ve graduated from all that awful stuff on your face and in your mouth, and you’re just learning to use your mouth for good stuff —like eating, someone starts to give you daily medications that make you feel funny and not very hungry. This lasts for two years.
Nik was just beginning to learn new oral motor skills when he was put on the seizure medications which —while they did prevent seizure activity, a highly important thing for his overall health and well-being— dulled his senses to the point that he lost all interest in food and all ability to recall the slight bit of oral-motor muscle memory he was beginning to develop.
In the sixty-two days Nik has been free of those medications, Nik has made such phenomenal progress —much of which I’ve talked about in other places —and he continues to push himself. It’s as if he is consciously trying to catch up on things he’s missed out on.
So, please pardon me for boasting and boring you with the minutiae of Nik’s daily eating habits. It’s been such a hard-fought battle —one I can’t even say is won yet. Someone asked me recently if this means Nik will lose the feeding tube soon; I honestly cannot say. I do know that he needs to make significantly more progress —including learning to actually bite, chew and swallow all of his food —before that discussion is even on the table.
In the meantime, I’m trying really hard to use each meal as a learning opportunity.
When Nik was in the NICU, I was unable to express enough milk to feed him. My doctor told me not to worry about it; he said lots of woman whose children are born so prematurely have this difficulty. What he couldn’t tell me though, was how to deal with the grief I felt over not being able to bond with my child in this most primal way; the knowledge that I would never feel my precious baby suckling while cradled in my arms. It was a bitter pill to swallow then and one on which I still choke in moments of sleep-deprived frustration. It can be mentally and emotionally exhausting for me —this struggle to let go of the guilt I feel around my inability to provide the one thing for my child that seems to be a natural and inherent part of motherhood —nurturing and nourishing one’s child with food.
Whenever Nik fights me about eating, my knee-jerk reaction is to take it personally or to get angry and I wonder what I am doing wrong or why it’s so damned hard. I have to stop and remind myself of, well, so much. That it is Nik’s process and that he is actually the teacher. That he has made such rapid and tremendous progress in spite of the constant barrage of sensory input he has to process with each and every bite. If I change a food, does he know what flavor to expect on his tongue? Is the consistency too thick or too lumpy? Is there too much fiber in his meal which will cause him distress later in the day or night? Does he do better when he’s holding his own spoon and trying to feed himself while alternating bites from my spoon? How much effort does that coordination take him; how hard is he concentrating and how tenuous is his concentration at any given meal?
It is such a deeply intricate dance of give and take, watch and follow. That seems to be our norm in nearly everything these days and it takes a lot out of me. And yet, given the choice? I would feast upon this challenge like a glutton. The progress is too sweet to pass up.
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