Compassion vs. Pity

Many people have taken an interest in and concern for Brave Baby since she was born. In general, this is gratifying, to know that people are rooting for us. But I have noticed a considerable difference in the way I feel following encounters with some people versus others. Following some conversations during which the topic of Brave Baby comes up, I feel comforted, uplifted, grateful. But following other conversations, I feel slimed. I'm angry, irritated. I have to catch myself or I'll go around for days thinking ill thoughts against the person.

I've spent ample amounts of time trying to figure out why I would feel so darkly toward someone who has expressed concern for my and for my child's well-being. I have concluded that it's because I despise feeling pitied. It gives me the willies. Pitying people talk to me like we are at a mortuary. They ask how things are going and, when I say they're going well, they draw their lips into a line and nod, the sorrowful, understanding look on their faces saying, "Oh, you brave girl, saying things are going well when they clearly are not." One person I didn't even know very well, but who was inexplicably clamoring to "be there" for me, even said as much, exhorting me to "open up and express my real feelings." I suppose I seemed too balanced and, well, happy, given my situation, or what he knew of it.

Therein lies one of the main distinctions between compassion and pity. People who approach me with pity know very little of the reality of my situation, which probably explains why it always happens with people who are well-meaning but who aren't really part of my life. They know the broad outlines. I've got an extremely premature baby with a tracheostomy, oxygen-dependent, who's fed by a tube. Plus a 3-year old. And I work. It all sounds overwhelming, I know, and sometimes it is. But they don't know the color and detail of my life, the many ways in which it is more than bearable. It seems, rather, that they are projecting how they would feel were they in what they believe to be my circumstances. And because they have such a tragic view of Brave Baby, they cannot believe it when I tell them she is well. Not perfect, but well.

That's the other distinguishing aspect of pity. People who seem to pity me don't seem all that interested in hearing my good news. As much concern as they express for Brave Baby, their reactions to reports of positive developments are far more understated than their reactions to negative turns of events. And they seem completely disinterested in my efforts to extract positive meaning from the situation, to focus on all that I have to be grateful for. It's almost like they don't even hear me. Maybe they will not believe me until there is improvement they can see, until the technology is gone. To some people, visible disability is only slightly better than death. I just want to shake them, to shout, "She's happy! She's developing! The technology supports her. It doesn't define her!" They wouldn't hear me though. They'd probably just think I was finally expressing those pent-up emotions, albeit in a misdirected fashion.

Compassion, on the other hand, says, "I know you're going through something difficult, but I believe you have the inner resources to prevail. So when you tell me you are well, that I can believe. When you tell me that you have much to be thankful for, I know that is true. But when you are grieving and angry and tell me you cannot take a single minute more of any of it, I know that is true too-for the time being-and I will help you walk back to a place where you can breathe. There is space for all of that between us."

I don't want anyone who might read my post to wonder and worry whether I view their efforts to reach out to me as pitying or compassionate. I doubt that anyone who would take the time to read it would fall into the former category. More importantly, none of us always knows how to respond when people we care about are going through tough times. Noticing the difference between compassion and pity is less important to me as a way to label other people's overtures than it is a means of reminding myself of what I have learned from the experience of parenting Brave Baby. Sometimes I have to list for myself the gifts so that I don't focus on the losses. I believe one gift is, perhaps, being able to be more responsive to other people who have fallen on hardship. One gift among many. I hope you can believe that.

Taking Note

Last week was the anniversary of Brave Baby's tracheostomy surgery. Not much to celebrate, really. It's not as though we celebrated it, merely noticed it as in, "Wow, we've been living with this a year already." Not much has changed with her in that year, at least not outwardly. Still the trach, still the oxygen, still the g-tube. What pipe dreams I had this time last year-that she'd need the trach no more than a year, the oxygen no more than a few months, the g-tube for six months, tops. Ha!

But things have changed. I have to remind myself of that. We haven't been able to get rid of any of the technology, I guess because the underlying conditions requiring all of that technology turned out to be considerably worse than we'd thought. When Brave Baby was first trached, it was for polyps on her vocal chords, which made it difficult for air to pass through. The ENT doctors assured us that these would likely go away on their own within a year. The really good news, they told us, was that there was no damage to her subglottic region. That's real trouble.

Two weeks later, Brave Baby had her g-tube placed. During the surgery, the ENT did a routine bronchoscopy to find out what was going on with those polyps. And lo and behold, subglottic damage. Major damage. Stage 4 stenosis. Where'd that come from?

I'll never forget the way he gave us the news. Grimly. Like a reaper. "Not many treatments for this," he said. "Major surgery. Only 80% effective." "You're saying she'll have a trach for the rest of her life?" I cried. "Well that's not very common. But this is a lot more serious than we thought. We only have maybe one or two children in our practice with this condition. And we've never seen it happen like this."

Floored. Just absolutely floored. Dad and I were directed to the chapel to do our (my) crying. We sat there, stunned. A couple who'd been in the surgery waiting room when we got our news, who'd witnessed our drama, came in to pray. An odd couple. The woman, short, rotund, with lots of curly light brown hair. The man, even shorter-a little person-stocky and cleanly bald. But kind. They were so kind. They promised to pray for us. Later, we saw them leaving the hospital, both crying. I have seen them since, on subsequent trips. They are regulars, like us.

So stunned were we that we completely overlooked the good-extremely good-news that day. Brave Baby had also had exploratory bowel surgery-yes, it was an incredibly tough day for that baby-because scans had suggested she might have a bowel malrotation. Turned out she didn't. Her small intestines are just slightly more to the left than most people's, but not a problem. So they didn't have to do more extensive surgery to correct the malrotation which, I've since learned, can be extremely serious.

And that is what I often fall into doing, overlooking the good news. I take for granted the things that are going well. But isn't that what the average parent of the typical kid feels entitled to do, to take for granted their child's health, their child's aliveness? Yes, indeed. But I cannot afford to. Every moment, every breath is a blessing. Every complication dodged. Every little piece of progress. Mark it. Remember it.