Every good diplomat knows that in negotiations, one can make use of carrots or sticks to bring a reluctant party to agree. Most often, carrots are quite effective, for they keep the negotiation positive, allowing both parties to be pleased in the end. Unfortunately, overuse of carrots, as we are learning, can come back to haunt the diplomat.
In our current situation, BG often has to do things he would never in a million years offer to do. He has to undergo the removal of very sticky bandages, take nasty medication orally, sit still through ultrasounds and x-rays, and very occasionally, he has to be poked by sharp needles. These activities are on few people’s lists of favorite things to do on any given day, but add nausea, general feelings of ick, and the fact that our little guy is stuck in a single room most of his days, and these activities become the fodder for daily U.N. summits.
Enter the carrot.
The most challenging issue (mostly because it happens a couple of times a day) is the taking of oral medication. There have been times when poor BG has had five or six medicine droppers plus chewable pills that he has to take in one sitting, and while most of the meds have been spruced up with some sort of corn syrup-based artificial cherry or grape flavoring, there remain a few that are nasty no matter what. The trouble is, those meds still have to go into BG’s mouth and down to his belly. We started with chocolate chips. As you know, before this, we could count the number of times the boy had had chocolate on one hand, but when it comes to curing cancer, you’ve got to do what it takes, so chocolate it was. It would work pretty well. Then we tried M&Ms because we had a big bag, and well, why not. Soon, however, BG was introduced to the world of Lindor truffles, and before we knew it, he wanted nothing to do with the M&Ms. The only thing that would get those meds into his mouth was the shiny, crinkly wrapper of a truffle. Again, we had to get them in. You can’t just not give a kid his chemo, so if this was the particular carrot that was going to do the job, we would buy big bags of them (it doesn’t hurt that these are highly caloric, and we need the boy to gain weight too).
While chocolate was probably the most effective carrot, sticks have occasionally been necessary. Once in awhile, when things are dire, we have had to warn BG that if he doesn’t do “x” that someone may hold him down again as has happened on a couple of occasions in the past. More often than not, though, sticks are more like, if you don’t stop stalling and take your meds, I’m going to sing or play a song you don’t like or put on a wig. Yes, a wig. I got him to take a bunch of meds once because I put on an afro, which he hated. But honestly, the sticks are not as effective as the carrots typically. The carrots keep everyone happy.
Unfortunately, the carrots can get old. Even chocolate soon lost its appeal because his mouth hurt from his chemotherapy, and he was simply not interested in most food. BG already had a strong interest in medical supplies and had been given a few syringes and such for medical play. We soon realized, however, that the supplies could be powerful bargaining chips, so we and the nurses began using them. We used them to get him to take medications, to get him to succumb to dressing changes, to keep him happy when he had to go in for surgery, to encourage eating and baths–for nearly everything we needed him to do without a fuss.
Now let me insert here that the supplies have been amazing. BG is learning so much, and they are providing him such empowerment as he undergoes a series of events each day over which he has almost no control. They have become his favorite toy, and when he masters one new medical skill, he wants something more interesting, more advanced. It’s no surprise, too, that when his providers see this interest, they want to encourage it because, quite frankly, it’s all pretty positive. To have a child who can tell others what is happening to him, who is able to assist in his own care is something very special because it means he’s generally fairly happy.
Generally. Until he doesn’t get a medical supply.
I think you can guess where this is going. BG’s desire for more medical supplies has resulted in more than one fit of anger or disappointment or frustration because a nurse wasn’t willing to give him something harmful. He has begun to realize that when we have new nurses who don’t know him well, he can often swindle them into giving him many more supplies than he would normally receive. He insists on keeping each of his oral medicine syringes, and has started to make demands. Obviously, this is not acceptable. Somehow, and likely because he is ill, we let our boundaries slip, and our son is now hoarding and demanding carrots.
Last night was the capstone when one of our favorite night nurses was with us. He came in to see BG and looked through our son’s medical box to see what he might bring him as a reward for taking his medicine without any prompting. He looked and then came back awhile later and told BG, “Well, I looked and looked for something but I couldn’t find any medical supplies you didn’t have, so I brought you something else instead!” He held up a fabulous caricature he had drawn of BG. J and I were so thrilled and heartened that he had done this for him, but this soon changed as our son yelled, “NO! Take it away! I don’t want it! I don’t like it!”
I have heard that disappointment in a child’s actions is a pretty devastating feeling to endure as a parent, and J and I learned first-hand just how awful it is. When the nurse left (and he was so very gracious, and just laughed the reaction off), I’ll admit that I cried. Granted our son was tired and ready for bed, was on his last day of chemo, was struggling with so much more than the surface revealed, but in that moment, he was ungrateful, and his greed for more supplies overtook any social graces this three-year-old may have acquired. So I cried because I felt like I had failed as a parent in something J and I had done so well with prior to this experience. Our son wasn’t a kid who demanded things, who always wanted more because we had taught him to be happy with what he had, to repurpose things, and certainly not to expect that others would always come bearing gifts.
That is the tricky part. Our boy is in the hospital. He has cancer. When people come to visit, they are compelled to bring things. People send things. When nurses see a cute boy who wants to emulate them, they bring him things. Hell, we regularly bring him little gifts because something has to make this time more bearable, and little (and big) surprises have that sort of effect. While I’m not sure there is anything wrong with the people in his life wanting him to have things to keep his mind off of what is going on, the gift-giving coupled with the medical supply thing may be creating a set of unappealing expectations.
Obviously, we have decided to set some new boundaries. We’re back to medical supplies being true carrots and carrots alone. He has more than he needs in his medical box (seriously–he could draw labs, administer chemo and other IV drugs, bandage wounds, and basically start up his own oncology practice), so we’ve decided he needs to be happy with what he has, and only when he has to do something extra difficult may he have a medical supply as a reward. When gifts arrive, we’re holding onto them a bit until the right moment when they’re needed to break up the monotony of hospital time or to turn a rough day around. We’re working toward making the feeling of victory of getting through an unpleasant task reward enough as well. That takes a little doing given our recent history, but it actually works. Just today, BG remarked a few times after doing something without prompting or without fuss that he’s a grownup now. He even opted to throw out some of his overflowing medical supplies, and he gladly helped his favorite nurse prepare medical supplies for use on another patient without asking for any himself. He can get this, and I don’t think he’s too far gone for us to reinstill this sense of not constantly needing more, but it may be a challenge along the way.
As always, any of your sage wisdom is welcome here. This is new territory for us, and shaky territory at that, so we welcome ideas when it comes to maintaining boundaries in extreme circumstances such as these.