Chronic Illness is a Family Affair
Recently my 19-year-old son Jonah traveled with Lowell (16), who has been battling severe Crohn’s since he was 2, on a family trip with a few of his aunts, uncles and cousins one day earlier then we were to arrive. I instructed Jonah to make sure Lowell drank enough water on the plane, after landing, and throughout the rest of the day. Having Crohn’s disease in general requires careful attention to nutrition and dehydration but also due to Lowell’s surgeries, he gets dehydrated easily and thus has to be vigilant about his fluid intake.
Some people don’t like to drink a lot of water. Have you met those people? I don’t really understand it because Jonah and I drink water all day long. My 27 oz. Klean Kanteen is always with me, and I try to drink at least 3 full ones a day. Lowell, on the other hand, takes tiny sips of his water throughout the day. I have tried many things to get him to drink more. I have bought many water bottles, different hydrating tablets, powders and drinks to make the water more appealing, none of which he has liked. He will drink lemonade or vitamin water, but getting him to drink enough of anything on any given day is an issue. Not to mention that these sugary drinks are not so good for people in general and some doctors are recommending less sugar for people with IBD (disclaimer, not everyone with Crohn’s has the same dietary issues so everyone has a different plan and for Lowell, he tries to limit sugar)
This water drinking to stay hydrated is just one of the many things that he has to do to manage his chronic illness on a daily basis. A small thing for sure but when you are thinking about it all day long, like I do, and along with the many other aspects of his daily management, it becomes something bigger. Getting behind the hydration means headaches, increased heart rate and sometimes a trip to the doctor or ER, or even admitted to the hospital for IV fluids.
So we asked Jonah to make sure that Lowell drank water during this roughly 36-hour period before a parent was with them, as well as to periodically check in with us about how Lowell was doing. We needed to be kept informed about his pain, if he was functioning at his usual level or if something seemed off and if so, to let us know and ask for help from someone in the family.
A week later after everyone was home, I was talking to Jonah about all the big decisions we had to make over break concerning Lowell. Discussions about different treatments, doctors appointments we have scheduled, possibly traveling to see more experts, adding back enteral nutrition, and what to do about the struggle of keeping up with school.
Jonah shared with me that he had a whole new understanding — a revelation of sorts — of the level of attention, vigilance, and ability to think two steps ahead that is required from his dad and I to take care of Lowell. He confessed that worrying about and trying to get Lowell to drink water all day was utterly exhausting. I listened to him and replied, “Yes. I understand, this is what our days are like, and the drinking water thing is just one small part”.
Jonah is a freshman in college. He was home for winter break and was once again immersed in our chronic illness world. Jonah has been profoundly affected by Lowell’s illness in some ways, but in other ways since it has mostly been his whole life, it is just part of our families dynamic and day-to-day functioning. Crohn’s in our family permeated all of our relationships, our family activities and our general level of closeness. On a positive note, we are pretty close in ways we would not have been otherwise because of the shared experience of the trauma and hardship that we have gone through.
Though Lowell’s Crohn’s has basically been lifelong for him, things worsened 4 years ago with his first surgery and since then, we have all lived with a countless number of unpredictable medical emergencies, surgeries, interventions, and worst of all, as I have written about in a previous post, Lowell’s constant, unrelenting stomach pain.
After the February 2012 event that led to number of surgeries and other IBD medical situations, I worried about Jonah. First, of course, that he was being neglected. For a few of the nights during Lowell’s initial 2 week hospital stay, Jonah, 15 at the time, stayed with family and then some close friends in the neighborhood, with our dog Ruby, which made things a little better for him.
Every day after school he would come to the hospital and hang out with us in Lowell’s room. Sometimes I would go to dinner with him, or drive him back to where he was staying. I was in a very emotional state. When I would leave Lowell’s side, I would walk around like a zombie in the outside world and think “how come people on the street, drivers in their cars, patrons at whatever restaurant we were at, are just going on with their lives like everything is fine? “ Everything was not fine and I just wanted to shout it out.
Jonah was quiet most of the time, at least he didn’t talk much about what he was feeling about Lowell. One night I got upset and asked him how he could he not be telling me how he was feeling; how could he not say to me or Lowell that he felt bad about what we were going through or that he was worried about him? How could he just sit there and talk about sports? He answered me: “Mom do you know what it is like to be sitting in class every day listening to the teacher talk about geometry, or eating lunch with my friends who talk about the usual stuff, school, work, track practice or even worse, talk in a way that boys can sometimes be insulting to one another — that would have not bothered me before but now makes me almost feel like crying — and meanwhile Lowell is suffering at Cedars and you and dad are gone all the time?”
Well, yes, I told him, I know exactly how that feels. I never questioned his empathy for Lowell and us again, nor did I pressure him to be more vocal about his feelings because we were all coping in our own way. And so when he had to be the one watching out for Lowell for that one day and expressed what it took to be mindful of Lowell’s water drinking, I was reminded again that chronic illness is a family affair and it is hard to know what it is really like until you are in it yourself.
