Saturday, May 13, 2017

May flowers

Today was another of those long appointment days: dentist, then pre-anesthesia clinic, home for lunch, then off again for PT and speech. The boy had a tooth pulled (no more double row), got the med dosing plan for next week, did some good swimming in PT, and told his speech therapist that he needed chocolate. She fed him pudding, because if you can ask (and confirm with "yes"), you should have it.

Last weekend we did Bloomsday, with my mom and Q and I walking, the girls running (behind their Auntie), and my dad and my brother mountain biking while the rest of us were on the course. The weekend kept us hopping. My mom ended up needing a little medical attention Saturday night (she'll be okay, I think), and my dad took a heckuva spill off his bike, just as they were returning to the parking lot at the end of the ride. He's had surgery (pins in his femur) and is rehabbing now with an eye toward summer projects and hopefully some fun in seven-ish weeks. I think we'll never have another weekend quite like that one.

At the risk of sounding whiny... I am done with the rain. This week we topped fifteen inches over our annual average for this point in the water year. It's hard to get outside enough to stay on top of the itinerant dandelions, never mind getting to the rest of the work. We have had a handful of really beautiful days, which have produced apple blossoms, pear blossoms, cherry blossoms, and even some baby nectarines, which look like tiny alien fruits for the time being. The fig is leafing out, the rhubarb is tall, and this year's miracle of miracles: the quince is blooming! It's resisted like mad, but maybe the cold snap(s) of the winter did the trick. The lilac is getting ready to open, the peonies are stretching tall, the fat-leafed bottoms of the hollyhocks are mounding up, the chives are blooming, and the grapes are unfurling. It's a slowly building cacophony out there.

In other news, the school year is wrapping up, ready or not. As usual, we'll have work to continue through the summer, and we'll be prepping soon for the fall. The deadlines for summer classes and summer deadlines for fall are all queueing up. It's true what they say: the days are long, but the years are short.

Off now to sleep and pop up again in the morning. Love on those punkins.

Saturday, January 28, 2017

All along the watchtower

I'm writing from the couch, with a fire in the fireplace on a grey day. Q is communing with the curious old lady cat, who came to visit and see what his tube feeding and meds were all about this morning. She remains on his lap where she intermittently flicks his nose with her tail, much to his delight, while he maintains a purposefully gentle grasp on her leg. E and S are still asleep, even though I have Rattle and Hum playing not softly. K is ironing, bless her sweet heart. The cloth napkins and tablecloth needed help, I guess.

A lot of water has flowed under the bridge since Q's procedures... Mostly, we're grateful to be done with the vomiting, or mostly done, anyway. I think this puts him at about five months to recover from the extra nudge on the gag reflex from being intubated. Initially, this adversely affected his weight gain, because, as you might imagine, losing an entire meal once or twice a day is problematic. But as of this week, he's up not quite ten pounds since the tube placement (lost a couple of pounds at first, so he gained all this since mid-October). We're all feeling it, like crazy, and I'm scrambling for modifications and reorganizing the house to help alleviate the increasing physical strain of this suddenly strapping young man.

All the other areas of recovery were pretty good, though. He needed more eye ointment than we'd initially anticipated, but again, healed quickly and thoroughly. Which reminds me, I need to get him back in for the final follow-up ophthalmology appointment. It's also time for another dental visit. Since Q doesn't chew much food, he doesn't have the necessary stimulation to get the roots wiggling on loose teeth. So he has a single shark tooth situation going on right now. It's kind of adorable, but probably not all that comfortable.

The girls are toddling along. E survived her first quarter on the University campus, and as sort of a junior, too. She's playing viola with the symphony, and is ecstatic to be with a group of mostly music majors and minors. K and S got to attend the concert this last week, and were duly impressed with the sheer musicality of the talent. Heh. K is getting ready to stretch her own educational wings via the local community college, wrapping up her homeschooling adventure, while S has just begun the high school portion of her last years at home. They're tracking well as individuals, growing the skills they'll need to wrangle their upcoming forays into adulthood. Not that its a seamless thing, mind you. Growing humans isn't a smooth process at any stage. But it's pretty neat to watch their innate abilities, character, and thought processes take on a certain polish as they reach for their goals, educational and otherwise. That they enjoy things like They Might be Giants is a nice bonus.

These days, I'm spending most of my time running people to therapies, work, or orchestra. In a close second is the management of paperwork, especially as it pertains to disability issues and medical appointments. Those are followed by the re-configuring of the house, as I mentioned. It's a little weird to note how much home life changes with the ages and needs of the occupants. Suppertime is later for the girls because of rehearsals, classes, and that one work schedule. Occasionally, I'm at home without anyone else here for a half hour or so at a time and I hardly know what to do with myself. Sometimes Grandma does some of the running around, bless her, and then I have longer stretches to catch up laundry, etc.

What else? The garden is its wintry self: crunchy some mornings, gray and brown, with tiny sprouts of green, here and there. The magnolia stellata is putting on fuzzy buds, getting ready for March blossoms. The wee evergreens we found for a dollar or two last fall and chucked quickly into the dirt are in various states of disarray. They look like they've been working hard to survive the couple of weeks we had of subfreezing temps. K and S and I went out and stole (shh!) leaves from right of way areas and used them as garden mulch. Despite some hefty winds, they're still there, trying to help us with our attempts at small-scale hugelkultur.

We didn't have any major evidence of wasps last summer, thank goodness. K was helpful with setting up the traps, since I'm not supposed to involve myself with that anymore. Here's to the coldness having put down a few of the possible queens for the coming summer. The baby upright apple trees also made it into their new garden spots, and seem to have survived. I'm hoping for more fruits than the two surprise babies we had from the one tree. The raspberries probably need transplanting this year...

In the bulb world, we're looking forward to new fritillaria this year - K's pick from the bulb sale last fall. The front tulips waited to stick out their noses until after the New Year this year, as opposed to early December last season. And despite our very best efforts, there are still tulips coming up under the ramp. No idea what to do about that, since we keep transplanting them, and there just keep being more... Silly overachievers.

K, in true farming genes fashion, began planning the spring plantings in November. S asked, amid a snow flurry a couple of weeks ago how long it would be before we could start working in the yard again. There's nothing quite as lovely as being outside, hands in the dirt, bringing certain things to heel and setting others free... Which reminds me: the Greek oregano needs minding.

My friend, Sarah, has been posting quotes from Thomas Aquinas today, which are inspiring me to do some real and deep reading. I think I'll do some, right after I give Q lunch.

If you could, my brother (and his wife) could use bolstering prayers as he barrels through chemo, while enjoying the outdoors as much as possible. I hope you all are well and profoundly blessed, wherever you are and however your garden grows.

Love one another...
John 13:34,35

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.)

Wednesday, November 04, 2015

November begins

Fall is finally here, with a light freeze last night. The purple peppers, yellow summer squash, figs, and wee acorn and butternut squashes came in. It was chilly enough to wilt the tomato bushes into mush, but not cold enough to completely discourage the honey bees or the yellowjackets. There's one spot that harbors an in-ground nest that's been problematic for a few months now. I'd hoped that today we'd finally gotten to weather that would allow some digging up and drubbing of that particular location, but alas. K and I went out to trim the seed heads off the bronze fennel (injuries have us tag teaming pretty much everything these days) and made it halfway through before the first honey bee appeared, and had just finished when the yellowjacket landed on me. Since my last run-in with this bunch of wasps resulted in steroids and an epi-pen, we were done for the day. Never have I wished so for a good, hard freeze.

The yard. Well... Our late summer and early fall were sort of devoured by injuries, allergies, and appointments. Since school started, we've been lost amid the piles of books, calendar management, and practices of various types. So the back needs those trellises and supports stuck into their quikcrete, the ramp needs someone to crawl under it (haha), and the weedy bits need black plastic stretched over them. Winterizing is going to be hit and miss, I'm afraid. Although, if the current weather pattern keeps up, we'll be weeding well into December. Last winter, the tulips started coming up Christmas week. Perhaps we'll have a similar experience this year? Meanwhile, I'm going to try to be more patient about not being able to dig, pull, or lift - so many things to transplant to more favorable spots!

Q is well, if a bit confounding lately. We've had some slight changes to meds in an effort to eliminate the myoclonic jerks he's been experiencing. So far, no change. He's more or less unperturbed by these events, though, so we're all just monitoring for the time being.

Equipment needs are in flux again, since he gained eight pounds in ten months and outgrew everything. New wheelchair seating, foot and hand splints, and sit to stand stander are all in the works. I'm wondering about trying to figure out an adjustable bed, too, since we're all having a tougher time minding good body mechanics with dressing and other personal care needs. I need to think a little more on some of the details and pursue a variety of helpful supports, some of which I'm only vaguely aware at this point.

And now we sleep. Appointments tomorrow. 

Saturday, July 25, 2015

Race Report

It seems we've become a family of runners. We've slowly increased our mileage over the last few years, as the bigger kids have been increasingly able to take on more and have been increasingly interested in doing so. The race fees haven't been easy to come by (the kids work and save up), the shoes and other gear have required rather a lot of planning (and sales at Amazon on past year's models), and the learning curve for running with offspring... Well, it's a curve, for all of us, but definitely worth it.

Almost three years ago, we tentatively stuck our toes into a 10K, because by then running a 5K in intervals was a regular thing, just for burning off steam and PE.  We'd had to take a break from running with Q because we, uh, broke his "all-terrain" chair (oops) with things like 9-10 miles per week and that attempt at the long jump, which the big brother will have to tell you more about one day. (Q couldn't have been happier about that adventure, by the way.) Amazing and kind friends sent us a WIKE Special Needs jogger stroller/bike trailer, which has been completely life-altering for many reasons. Probably the most important being that Q likes to go as fast as possible, which is much easier when we can have him on wheels, because he's still growing.

With that lovely piece of equipment, we struck out into new territory: local paths for biking, increasing gradually to 22 miles down a trail from a mountain pass, and regular rides of similar lengths. Last spring we tried out running 12Ks, and repeated them this year - one with small hills and one with two looong uphills. This year those two races were a bit harder than last because the boy grew, gaining about 8 pounds over that time period. I'd also needed some PT after wrenching my back getting him dressed, which was annoyingly debilitating (why don't we just have replacement parts, anyway?), and which meant more careful training this year than last.

We'd discussed our next plans a few times, including a local run that's a bit like Ragnar (but shorter), and the possibility of finding a 15K or similar. In January, we started running longer distances nearly every Sunday morning, supported by Grandma. Thanks to a very mild winter, we hadn't really had much downtime (no hail in our ears this year - much to Q's chagrin), so it was comparatively easy to add a half mile or a mile every couple of weeks, while maintaining a couple of shorter runs during the week (2-5mi, sometimes with stairs, sometimes with Tabata sprints, sometimes with general bodyweight circuits). In May, we shifted to longer runs on Sundays, then 3mi on Tue, 4mi on Wed, 3mi on Thu, with rest and "crosstraining" (yardwork for the win!) on the other days. By June, the Wed runs were 5mi, and the miscellaneous cross-training was back in for two days a week - some of which looked a lot like PT exercises, including stretching and foam-rolling.

In the middle of this, I opted to not run with Q when our distances were above roughly 10mi with an outdoor temp above 85 by the end of the run. Trying to keep him cool enough and hydrated can add an extra 30-60min to an already long time in the heat for the rest of us, plus we started experiencing some wear and tear issues with the Wike. This has not floated his boat, even though it has meant he instead spends time finding bullfrogs, beavers, and blackberries with Grandma and Grandpa.

The last weeks have been busy and scattered - kids with different obligations, our summer program at church, etc., preventing longer Sunday runs. After having hit the 12.15mi mark, not having those longer runs felt a little weird. We ran 8mi last Sunday, then 3 and 2 for the rest of the week, with some light circuit work. At 8 this morning, my mom dropped the girls and I off at a local middle school and we joined 171 other runners for a half marathon in the rain, over a course of various terrains.

Highlights: the racing couple arguing hilariously about when the whining should commence (now - less than a hundred feet past the start line), the mile plus of mucky trail with tree roots and a couple of waterfalls, running through the ravine where the bridge had collapsed closing that piece of trail except for race day. Also: running most of the race with my (gulp) adult daughter and kibitzing as we went, S coming in third in her age group at 2:22 (8min ahead of her goal), 55 degrees F start temp after weeks of unseasonable highs in the 90's. It was fun to follow the orange arrows off the side of a gorgeous arched bridge, into the valley by the river, through a couple of fields, up a newly chip-sealed road that squeaked under our wet shoes, and onto the shoulder of a highway where the trucks full of four-wheelers waved and gave us nearly a lane to ourselves, before we met the paved trailhead.

The race support was fantastic: water at four stations along the route, with GU and Gatorade at an additional three. The volunteers were terribly supportive and encouraging (and maybe glad that the alert County Search Rescue team were kept bored?), and the folks at the finish line positively exuberant. They had plenty of bananas, Rice Krispies treats, whole oranges, and Propel water bottles - all of which were gratefully received. Thanks to the grandparents, we have nifty photos of Q ringing the bell at the finish gate, and of our muddy feet. We are tired, but happy, and (having soaked feet in Epsom salts) might even want to do all this again... As much fun as the irregularities were, I hope the trail and bridge can be completed soon - then Q could join us on this route.

I slowed down as we were within the last couple of miles. I'd run all but maybe a mile of the course - walking parts of the slippery single-track trail and stopping briefly for GU, drinks, and portapotty. God bless the volunteers with the hand sanitizer. This meant more consecutive miles and less use of intervals than ever before, and my knees and hip were making themselves known. K had slowed too, having similar issues, so we stretched a little and she took off again, finishing a couple of minutes ahead of me. I think if I hadn't stopped, I'd have come in under three hours. My time was 3:04, which I'm more than happy with.

We're home and cleaned up (I have never loved a hot shower in quite this way), the muddy shoes are drying by the door so they can be tidied, the two very old CamelBaks are empty and ready for next time, and with everyone fed we're much less wobbly than a few hours ago. Q has even decided to make eye contact again - possibly forgiving us for not taking him along this time. The medals are shiny, the technical shirts really nice, and best of all - the proceeds have gone to trail maintenance and construction.

The air out there smelled so good today. Of wet earth, clean evergreens and ferns, fresh wild edibles, damp rocks, and a complete absence of wildfire smoke. Luscious. A blessed way to spend a rainy Saturday.

You should come next time.

I wonder if there's a really inexpensive one nearby before Christmas..........

Tuesday, February 24, 2015


Nothing truly stops you.  Nothing truly holds you back.  For your own will is always within your control.  Sickness may challenge your body. But are you merely your body? Lameness may impede your legs. But you are not merely your legs. Your will is bigger than your legs. Your will needn’t be affected by an incident unless you let it.
~ Epictetus