I just experienced something that was definitely not on my bucket list: flying half way across the country with a two-year-old going through a full-blown colonoscopy prep. It was wild and not in a good way. By the time we were somewhere over Wisconsin, her shit had landed in the aisle of the plane and on the floor beneath her seat. I had changed many diapers that day (some with E. laying across my lap), and I had poop on my jeans (not mine) and we had multiple bags of medical supplies with us. But I still thought it was laugh out loud funny, because really, it was.
I would like to make a formal apology to all of the other passengers on the Sun Country flight from Minneapolis/St. Paul to Boston. I know, it was ridiculous. And, it stunk.
We were lucky enough to have E.’s incredible (and I do mean incredible, this is not hyperbole) nurse Julie traveling with us. She did an overnight shift starting each evening so that we could sleep through the night and have some downtime, too. This is like the solar eclipse of parenting a child with special needs—rare and stunning.
Two days later we were sitting in an windowless observation room in Boston Children’s Hospital, which houses the top rated gastroenterology team in the country. Over the past year while our daughter E. has been hooked up to a feeding tube, vomiting frequently and eating virtually nothing by mouth, we have visited multiple doctors in the Twin Cities. But no one was able to give us a definitive diagnosis, let alone an effective treatment.
“The good news is, she has all of her organs”, Dr. Flores told us right after all of the testing was complete.
And that sentence pretty much sums up how strange and terrifying it can be to have a child with a rare medical condition. I thought that having a child with all of their inner organs present was more or less a given.
Now we live with something mind-blowing in all of the best and worst ways. It turns out, there is nothing that is actually a given.
E. had just spent about six hours with a thick tube (with sensors attached) that wound down her nose, throat and into her intestines. We finally found out what’s been causing our girl to retch and gag and throw up so much it’s become a regular part of our daily life. Foregut neuropathy. It means that her intestines aren’t contracting as they should, which slows the digestive process. And although there’s been probably a hundred times when I have worried otherwise, it’s no one’s fault, not even mine. She was born this way.
There is no cure. Yet, the doctor told us that with this diagnosis, he’s seen every child he’s ever treated eventually grow out of it.
Eventually, hopefully, my girl will eat. She’ll someday bite into a ripe sungold tomato in the summertime and maybe even steal french fries from her brother’s plate. Some week we will sit down for Shabbat dinner and she will beg for ice cream before the meal has started. There will come a day—if the doctor is right—when she won’t just eye everything edible and exclaim, definitively, “No”. E. pronounces it nohh, shaking her head vigorously in a very two-year-old way that despite the heart-wrenching act of refusing all food, is still, somehow, remarkably cute.
It will likely be years until she is able to get off of the feeding tube, although there is no exact timeline.
Years, a heavy, hopeful thing. She will need to get bigger and stronger. And until then, we will try various drugs and interventions to get her through it.
The night that we learned about E.’s diagnosis, Cedar and I walked almost two hours from our hotel in Brookline to an old Italian restaurant in the North End. The kind of place where it smells terrific, like just-baked bread, even from way outside the place. We drank a nice dry rose, dug into fresh hand-made mushroom ravioli and then, afterwards, wandered down the street in hot pursuit of tiramisu.
I can still eat, even if my daughter cannot. And whenever possible, I intend to savor it.