E. is having an operation on her intestines in two weeks or less, depending on when we can get in. And the surgeon is going to put in a feeding tube into her stomach at the same time. So that will be that.
I’ll spare you the nitty gritty details. But basically, if we don’t pursue the surgery there’s a real chance that her condition could become be acute and fatal. The surgeon began our consultation with the opening line, “So, of course you’re having the surgery.” This from a highly reputable, not-rushing-to the-knife type of doctor. And it might, just might, correct her feeding issues. Since she’s so on the edge of getting enough calories for her little brain and body, with not an ounce to spare, we are going to put the feeding tube in to help her through the recovery. Because she probably won’t eat for a few days afterwards. And also, we will likely have to use it to supplement her feeding as needed, beyond the recovery time.
I’ve consulted about whether or not to do the feeding tube with four different medical providers. Which includes two gastroenterologists (one who heads the Children’s Hospital medical team), our pediatric surgeon plus E.’s speech therapist. With the feeding clinic team at Children’s Hospital. I’ve talked and over-talked about it with my dear, irreverent and ever-supportive friends, my parents and of course, endlessly with Cedar. But it really comes down to this: in order to develop, her brain and body need nourishment. And if she does not get what she needs now, during this critical time, she may suffer lifelong learning problems that we could actually prevent.
I have spent the last almost eleven months doing everything I could do to avoid this feeding tube. And now that this is what clearly needs to happen, it’s alright with me.
On the day that we met with the surgeon, once we had gotten the kids to sleep, I stayed up until eleven sitting in the kitchen with only one light on and soaked my softest sweater with tears. I told myself that I had failed, that I didn’t get her what she needed, that maybe she’s already stunted from too few calories. I thought about how she’s not even close to meeting the milestones for her gross motor development. I worried about not just this surgery but others that may or may not happen over time (her brain fluid issue, the cerebral cysts). I lamented how her little life might be harder on her than I ever expected.
But then I got up the next day around 6AM, like I often do. I put on my best pair of jeans (if I’m honest, I only have one pair that really fits) and took A. out for a fancy, handmade glazed doughnut and chocolate milk. I have never given him either of those things. Normally I let him pick one sweet thing or no sweet thing at all. I tend towards the nutritionally sound. But, oh man, we should do a deep fried breakfast more often. Extra frosting: yes, mam.
It was snowing out, like powdered sugar from the sky, even though it’s supposed to be spring. I admit, yes, I was eating my feelings with some sort of lavender cake fritter. I told A. that it was a Special Occasion, which is what I say whenever I want to break our rules without explaining very much. And of course, he loves a Special Occasion. Watching him grin, with possibly more chocolate on his face than whatever made it to his mouth, well, I loved it, too.
I could probably cry every day about E.’s condition and walk around feeling terrible a lot of the time. I can really dive into the grief about what I had hoped for her, about the fear of what’s to come. But I’m getting a little bit tougher and a lot more hip to the realization that if I’m feeling those feelings so intensely, then I actually miss all of the rest of it. I miss the lovely everyday things that make it worth it. The double sweet treat mornings and her brother kissing her on the forehead and the peek-a-boo games and her bright bright eyes and the way she nurses like a well socialized saber-toothed tiger—sometimes nipping at me with that one crazy sharp tooth of hers, but all snuggled in next to me like a wild, wondrous animal.
Because I’m a therapist you may be surprised at this, but here’s my take: sometimes feelings are actually not that helpful. What can be helpful is just to live through it and keep on with everything else. To get up and put on the nicest outfit that’s clean and get out of the house, even though it’s cloudy and still winter in April. When I stay in the present, right where we are, with a surgery coming up but not yet, with E. maybe someday not fine but actually fine right now, I get into that zone where I feel lucky. Lucky. And when I can keep my mind there, I am, a little bit, free.