Monday, August 15, 2016

Q news

I'm writing from the surgery waiting area at our Children's Hospital. Q is asleep now and various co-ordinated specialists are working away. This is something I try not to think too deeply about, since I'm acutely aware of the details anyway. He should be awake in an hour or so, and we'll get busy with Life with a G-tube.

The decision to go ahead with this was validated especially this summer as we've been enjoying time with family. Many days, especially highly active days, don't offer themselves up as easy ones in which to manage pureed foods at the perfect temperatures, eaten at his pace, out of the wind, etc. Another plus will be dosing certain meds without Q having to taste them. One in particular tastes like nuclear waste, and it's not going away any time soon.

Q's medial eye muscles are also being adjusted to counteract some of the exotropia/strabismus he's had since he was tiny. I'm hoping that all of these "small" adjustments will be bearable for him and truly improve his daily life, allowing for less energy to go into gathering adequate calories and more energy to go into cognitive and physical goals.

Speaking of goals, Q continues to work with his magnificent speech device, and is making small but significant and steady headway. Since so much of his interaction at every level depends on his having a fast enough and precise enough motor plan to pull off the desired result, we work on the small targets, with a calm body, rather than allowing larger, jerky or "bashing" movements. It's paying off in many important ways, but perhaps the most important one is that he has an expectation of being heard and involved in his own activity. The coolest thing ever (I think) is that this expectation has resulted in his replying when other people are trying to engage him in conversation. He has begun to vocalize a "hi" quite predictably upon seeing his favorite people, and to have an almost as enthusiastic smile or sound for other folks who speak directly to him as though they're expecting a response. This has also happened in conversation, when someone has asked him a question or series of questions, and it's almost easy to miss. Because who doesn't expect a young man to respond when spoken to? or to comment upon something he finds particularly awesome or regrettable? It's a lot of fun to hear this play out in person, especially when the whole scene sort of materializes in front of you, suddenly.

At the end of last school year Q's suspension gait trainer helped him to walk about 300 feet, chasing a soccer ball. So we borrowed the nifty contraption for the summer, hoping to get outside with him a lot, but we really haven't.  Between weather and scheduling, the opportunities have been fewer than I expected.

They're wrapping things up now, so I should too. (How does that happen, anyway? I barely had time to get the rest of the stuff out of the van and eat a salad.) More news later.

Tuesday, February 02, 2016

Feeling Better

"Pastors hear/see a lot of theologically spurious statements they choose to graciously ignore. However, sometimes a pastoral PSA is needed. When you make the choice to steal a car, cheat on a spouse, abuse your kids, or any number of selfish acts, please don't suggest Jesus led you to do so. That's worse than saying, "The devil made me do it." I understand that "things happen," and when they do own it, embrace grace and forgiveness from Jesus, and make amends as far as possible; but don't try to tell me He made you sin. Not only is that unbiblical (see james 1v13, Matthew 6v9-13, John8v11); but it's entirely the opposite of what Jesus intends for us. Jesus came to destroy selfishness, not sanction it."

A pastor friend posted this today, and I've been reflecting, shall we say. I'm not sure I can really add to his thoughts, but that doesn't mean there isn't more to say from additional perspectives.

Invariably, people who undertake monumentally selfish acts seem blind to the concurrent realities of those living with or nearby them. Sometimes this is the result of a literal stroke of diagnosable Narcissism. "My needs are my needs and therefore yours do not exist." Sometimes this is instead a result of environmental conditioning, some other form of mental illness, traumatic brain injury, addiction, or immaturity. Whatever the cause, too frequently people who wander blithely down the path of self-fulfillment at nearly any cost are also parents or function in a parental role. Sometimes they're also in leadership positions that make their destructive choices particularly widely painful.

When a person is capable of practicing reason, though, the causes become somewhat less relevant, while other details snap into focus in the foreground. Those of us witnessing the trainwrecks they set in motion can use our own grasp of socially acceptable behavior and life choices and faith to help recognize folks who are able to tell the difference between right and wrong, and therefore hold certain groups to higher standards. Certain professional groups have a higher fiduciary duty, for example, and most of us would say that the same should apply to parents.

So how does this work out for children whose parents see no problem twisting scripture (and not just the Christian Bible) to suit their wants? Predictably badly. Wallerstein, et al, address aspects of this in The Unexpected Legacy of Divorce, a somewhat horrifying read. The "sins of the fathers" show up, alright, and usually in ways adult children have sworn and committed to not drag their own kids through. And yet...

A couple of years ago I was chatting with a friend about hot topics in the global church and we ended up wondering together how to distill Jesus' message for the modern world. All the "A new command I give you: Love one another as I have loved you," and "Love your neighbor as yourself," taken apart and rolled back up, so to speak. One of my proposals was that the theology of Jesus pretty strongly supports healing acts, whatever those might look like. As in, maybe, "Guys, let's have less suffering."

I don't know about you, but by this point in my life, I am so ready for less suffering, more healing, and I can easily imagine Jesus enthusiasm for this. I think his language surrounding the meek and the suffering (Matt 5-7) reflects this. I think his invitation to cherish children and protect the innocents reflects this (Matt 19:14, Luke 17:2). I think his flipping of the tables in the temple reflects this - who in their right mind walks into a temple and tries to cheat those who've come to worship? Who does that!? Those who were comfortable making a temple into a den of robbers, that's who (Matt 21:12, 13), and who were Just Fine with the risk that someone in authority would figure them out and destroy their "business."

If we proceed on the principles that Jesus is for less suffering and against taking advantage of people, we have rather a lot of material to discuss, which I'm not especially interested in delving into here. Except for the parts relating to my pastor friend's quote.

While I have no specific knowledge as to the possible prompts for that opening quote, I've got some train wrecks in mind. Yesterday afternoon, three boys, 13, 16, and 17, were arrested for murder and attempted murder, after they bragged about the incident to undercover cops and other witnesses. Their mother sent them from their own homeless camp to another homeless camp to collect on a drug debt. Two people are dead, three more recovering, and these kids... Their lives are over. I cannot begin to imagine what propelled their mother into living in a tent with her three sons, or dealing black tar heroin, or making sure they had two guns with which to do their business. I cannot remotely grasp what stunning trajectory resulted in this irredeemable act. I mean, who does that!? *Someone who is Just Fine taking those risks and placing her children in the middle of taking responsibility for choices they cannot possibly understand, that's who.

That's not most of us. I know that's not most of us. And yet... What about those of us who just want to be happy? Who just want to feel loved? Or have that car? Or feel powerful, in some way, for crying out loud? We all just want to feel better, really, and that's not so hard to understand, wanting to feel better. Yeah, except when it costs something that we're not willing to pay. To use the initial examples, you wouldn't want to exchange places with the kid on the receiving end of your ire, or have your own car stolen, or be cuckolded (so to speak). Even if you deserve it.

But here's the thing. If you're someone's parent, those choices are now much less complicated. "Feeling better" needs to be tied to the outcomes of your kids. Because you have them, you owe them that, and then some. Being a moral human is now an obligation that's taken on epic importance, and it needs to begin with redefining how you're going to make yourself feel better. You're the adult, and you need to act like it.

If you're in the middle of justifying an action by attributing your desire to self-soothe to the Almighty (and I realize how unlikely it is that anyone fitting that description will see this), knock it off. I mean it. You've got a bazillion ways to think about whatever it is you're doing that DO NOT involve lying to yourself or becoming the kind of person you don't want influencing your children. Does that seem a little too far-fetched? Too "out there" to describe your choices? Then keep in mind that a child's first picture of God is his or her parent(s). "Whatever is good, whatever is true..." is not equivalent to the nonsense claim that children just want their parents to be happy (A lie. See Wallerstein.).

Kids are great at seeing through their parents, no matter their ages. They're never as interested in what you say as they are in what you do. If you're a parent who hopes to raise those kids into adults who love Jesus, are active in the church, and relate responsibly toward your grandchildren, then you have to knock it off. You cannot expect to engender in them an appreciation for a God who is Love while you destroy the other half of their DNA, wreak havoc on their home, do time for your theft and fraud, or just reframe the whole world to support your stinky, manipulative behaviors. No matter how you couch it with them, no matter what their developmental stages, there's no better way to make sure they're not interested in the Jesus you claim to follow than to fulfill your role as their example by being faithless, controlling, abusive, or "just" pathologically selfish.

If you're really interested in Feeling Better, find a good counselor and lay yourself bare. Begin by stating how deeply committed you are to every level of personal work required to do this, and end by committing again to being vulnerable and doing your homework. Excruciating as it may be, and oh, will it ever be, it's pure joy compared to looking around and realizing that you undercut everything you were supposed to protect. With the help of that counselor, execute plans to change your behaviors so that you can apologize and mean it, and get busy earning the respect you want to see in their faces.

Isn't that what we were supposed to have learned from Jesus' example, anyway? Self-sacrifice, in order to lift up what is noble and beautiful, despite our urges to the contrary, in order that those who look to us for leadership may yet rise, too. "Guys, let's have less suffering. For such is the kingdom of heaven: wholeness begat by the Love that I am." More frequently than some would like to acknowledge this means finding new ways to die to self, asking trusted friends to help us, and admitting uncomfortable things to those whom we've wronged. This includes defining and redefining what it means to really Feel Better.


And if you're feeling desperate about this kind of thing or anything else, call a friend or call 911, and say so. You are needed here, and as long as you are here, there is so much potential for help, goodness, and redemption. All things are possible, and there is always a reason for hope. If you can't feel that right now, let someone else carry it and believe it for you. Do not give up. We are all in this together.

(*The roles of neurotransmitters and epigenetics should figure large in this kind of conversation, but another time.)