Really Walking Now

Cruising

Just a video of Brave Baby cruising along the couch.

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.

An Experiment

Goodbye to anonymity. This is for the grandparents though.

A Disappointment and a Renewal of Hope

Yesterday was defined by another disappointing trip to the ENT doc. This only a few weeks after we became wildly excited that the doc had managed to dilate Brave Baby's airway to "almost normal". She told me that the fact that we haven't heard any voice from Brave Baby since the dilation means the airway is probably scarred over again. If so, there's no point in continuing to dilate because the gains will be lost too quickly. All my hopes dashed. I'd been hoping Brave Baby would start being able to breathe through her nose a bit, to smell, to taste more. Thought she might start to eat better if she could taste better. I thought my hopes were modest, to be honest. I thought we were finally on the upswing.

When I got home from that appointment, I didn't have the energy for much more than cleaning out my inbox. Coincidentally, I decided to take a look at this link my cousin sent me quite some time ago to the Lawson State Community College's black history links. Quite frankly, I have never heard of Lawson State Community College. I don't even know what state it's in. But I like this catalog. It's surprisingly current. It's already been updated with an entry on the Haiti earthquake of 2010. Oh, and wow(!), I just realized that my dad's on there too. Supercool! I'll have to come back to that one. Anyway, as I was perusing, I came across the story of Joseph Laroche and his family. Laroche was the only black person-a Haitian, incidentally-to perish on the Titanic. One of his last acts was to put his French wife, who was pregnant at the time, and their two young daughters on a lifeboat.

There's a lot that's interesting about this story from a historical perspective but, particularly given the state of mind I was in yesterday, I zoned in on one particular fact. The Laroches' second daughter, Louise, was born prematurely. I don't know how prematurely. During that time, what would have been considered dangerously premature would surely have been far less premature than Brave Baby was. But, for her time, Louise's prematurity, however premature she was, left her with serious medical complications. The family was on the Titanic returning to Haiti because there were no opportunities for high-paying engineering jobs for a black man in France and Louise's medical bills were high. Joseph's mother had originally bought them tickets on another ship but, due to the restrictions on children on the first ship, the family switched their reservation to second class on the Titanic.

Louise survived the Titanic, along with her mother Juliette and her sister Simone. They returned to France, where the last child of Joseph and Juliette was born. And here's a picture of Louise in 1997. She lived to be 87 years old! This was heartening. I am often reminding myself that I have to take the long view, that Brave Baby's rough start will one day be only a story we tell. But, in the midst of it, it feels never-ending. It feels like my life will be and has always been this. I imagine that Joseph and Juliette must have felt the same things that my husband and I feel now: the pain of watching their child suffer, the fear of losing her, the isolation of having no one else who really understands what it's like to go through this. Juliette was willing to give up all that she knew and go with her husband to Haiti in order to amass the money needed to save their daughter. And, in the end, it seems, Louise's life progressed like any other. Well, beyon the fact that she almost perished with the Titanic. Toward the end of it, she was still able to smile. I hope Brave Baby will be smiling 87 years from now, and will live even longer than that.

We're rich. Who knew?

We're rich; wildly wealthy, in fact. At least that's the verdict of Florida Medicaid. Of course, we knew we made too much money to qualify for straight Medicaid. But there's a program called "Share of Cost" which takes only assets, not income, into account. We gave that a shot, but were denied. We just have too much money saved up. Never mind that it wouldn't be enough to get our family of four through even six months at anywhere near our current standard of living which, mind you, is not lavish. Never mind that it would be only enough to pay for maybe one month of 12 hours of nursing most days of the week. We could spend it all tomorrow paying off a small fraction of our student loans and, no doubt, qualify for Medicaid. Talk about perverse incentives.

Much as I differed with some of the champions of welfare reform in the 90s, I have to agree that our government's system of public assistance doesn't incentivize (how you like that MBA word?) people to do the right things, the things that will lift them out of poverty and allow them to stand on their own two. Since we've started trying to get some help with medical costs for Brave Baby, we've heard all sorts of stories about the lengths people go to in order to qualify for SSI and Medicaid. One spouse will quit their job to get the family's income under the acceptable level. Married couples will get divorced so that the mother can file as unwed and impoverished. Welcome to opposites world. Here's a thought. Shouldn't we be trying to support people to do the things that would be healthy for them and for society?

Need I explain further why I fully support the President's plan for health care reform?