Jenna, our 2-year-old, has had a feeding tube for over half her life now. When she first had it put in, I never expected more than a year later she would still need it or that we would have made so little progress with her eating. Between this and the looming probability of her needing a liver transplant, I sometimes find myself feeling discouraged, thinking “This is never going to end.” The transplant isn’t scheduled. She can’t even be put on the list until she’s finished with chemo next year, and we have no idea how long she will have the feeding tube.
This elusive future has been difficult for me to deal with because I am one of those people who enjoys generating to-do lists and relishes checking things off. I will, in fact, add something to my to-do list that I have already completed just so I can then check it off. My work has always revolved around Plans of Attack (POAs), deadlines, and ETAs. I’ve had control, for the most part, of the outcome and when things happened. But very little of that applies now to the work of caring for my daughter.
All the POAs, deadlines and ETAs in my work now with Jenna are vague and soft in nature, living in the realm of “watch and wait” and “do the best you can.” There is little to check off as finished except the day-to-day routine of medications and feeding schedule.
Jenna may get a liver transplant next year, or in 2 years, maybe 5 years or, perhaps, never. No one knows for sure. Her liver function is monitored closely by her doctors and she has been stable for several months. While they plan to submit her to the transplant committee next Spring, assuming she is placed on the transplant list, it could be years before she actually gets a transplant. Whether she gets on the list or not, the kind of liver disease she has can develop very slowly so she could live with it for many years without being much sicker, yet never fully recover either.
As for her feeding tube, typically in cases of long-lasting food aversions or eating issues, they’d replace the feeding tube (NG) with something more long-term, less conspicuous and easier to maintain. But because of Jenna’s particular liver disease, it is too risky for her to get that. And no one can make her eat, nor would we want to. We aren’t even sure why she won’t eat.
So I’ve been working on how to live freely with all this uncertainty. I can tell this will be an ongoing process…
What I’ve noticed in my quest so far is that actually looking for certainty in our lives is the beginning to finding freedom. This is a lot easier to do if I’m not thinking too far ahead or too far back. For example, if I think of only today, there is a lot I am certain about. Jenna will need her morning meds, chemo and evening meds. She will need a certain amount of formula pumped through her feeding tube today and all that involves. She may or may not sign “eat” during the day, but if she does (and even if she doesn’t), we will offer her food. Whether she eats it or not we cannot be certain of, but we will keep trying.
In a week I can be certain of the same things, plus a couple more like blood draws and doctor appointments. Occasionally, I take glimpses ahead 2, 3, 4 weeks, but I usually stop at a week. Any further out than that and there are too many unknowns. In fact, I rarely plan or think further out than a week and often say in my defense (mostly to my son), “That’s too far ahead to think about.”
Going the other direction, if I think too far back, evaluating how long Jenna has had the feeding tube or how many times we’ve gone to ER, etc., or comparing our past experiences with the present, there again I can get trapped and feel discouraged and insufficient, thinking things should be different from how they are or that I should have done something differently. So it’s just better all around to stay focused on short amounts of time in the present.
Another thing I’ve noticed is the importance of celebrating the successes, big and small. Like the week Jenna ate two raspberries and a blueberry. Or when her bilirubin blood test result was below 3 for the first time (normal range is 0.1 to 1.0). Or when she learned to walk. I might even be able to celebrate that it’s been over 3 months since we’ve made a trip to ER if I’m careful not to evaluate anything about that. When I am looking for success and progress in our daily and weekly lives, instead of shortcomings and “failures,” life looks better, the future tolerable, if not bright.
The other thing I’ve noticed is when I don’t get a break, away from the house, from Jenna, it does feel like it never ends because, well, it doesn’t. Pretty much 24/7 I am Mom/nurse. Getting away is something I’ve always struggled with. I’m a “home body” at heart. But it really is imperative that I get out without my kids once in a while, ideally on a regular weekly basis. Funny this feels like it will be the most difficult to do.
I don’t feel I’ve found all the answers yet. This path we are on with Jenna is certainly an uncertain one and learning to move freely along its twists and turns is absolutely necessary. So much of it is out of our control, and the sooner we can allow ourselves to meander with ease, the better.
Sometimes when I am looking at Jenna I think she has all the answers, all the wisdom. She doesn’t get discouraged or feel overwhelmed by her life. She doesn’t worry about what might happen in the future. She doesn’t seem to realize she is sick or even that something is wrong. She just takes it as it comes. Perhaps the answer isn’t “out there” somewhere, but is and has always been right in front of me.
(You can read about where our journey with Jenna began here)