Wednesday, September 26, 2018

Deja vu, I guess

I am nearly 48 years old. 

Just a few minutes ago while flying down the freeway with Q’s Coldplay Amazing Day singing away, I realized with a jolt why that polygraph needle bobbled. When the interviewer for what is probably the third largest LEO in the state asked me about sexual assault as part of my employment background check, there was “a little jump.” “Probably because it’s such a hot button issue.” That was 27 years ago. At that point I hadn’t yet realized that what happened six years earlier was assault. That would take me almost four more years, and the birth of my first child. 

My memory of telling my then husband about it, about nine years after the fact, is not quite as strong as that of the events themselves, but still something I revisit regularly. I had realized that there was a name for what happened and since the person in question was traveling in the periphery of our social circles, I thought it was important that the father of my child know why I didn’t want to do whatever it was that was coming up. He was appropriately incensed and compassionate, but I don’t think he quite knew what to say or do. What does one say? Do? To whom should one speak about these things? 

Time marches on of course, and the kids are practically all grown. They seem happy, well, hard-working, kind. Life is normal. “Normal.” I’m about to take Q into therapy. Normal.

I think about this periodically, probably a few times a month, and have worked to make it insignificant. But between current events and this sudden revelation I’m shaking, my palms are sweaty, my stomach churning, and breathing purposefully to calm the heck down. I’m going to have to figure out how to attend to this foreign-feeling, newly-fitted puzzle piece. Maybe I’ll try that when my heart rate drops, then. 

Perhaps I’ll avoid the news for awhile and do a lot more running. 

Tuesday, March 27, 2018


Today would have been a beloved Auntie’s birthday, and it is very much with us. Perhaps partly because it’s the first since her passing. The awareness of loss is great.

I happened to need to leave a vehicle for a kid at the park ‘n’ ride today, so I plopped it there and ran home. This is the first planned run I’ve done in eons, and the layers of significance just keep washing into my head now, like a rising tide. First and most obviously, my Aunt was a runner at my age, and having people in your life who Do Hard Things helps to create in kids (me) the idea that Hard Things Can, Should, and Must be Done. That my mother ran through her whole pregnancy with me - alongside my Aunt - is a detail I find most delightful. My Aunt died of pulmonary fibrosis, a hideous disease, after having successfully, concurrently, fended off lung cancer (for which she had no known risk factors). We spoke of running often, and how glad she was that it had become part of my norm, and then those of my daughters. 

So today I thought about her while I ran. I have what seems to be exercise-induced asthma, and not regularly running makes it worse. It reminded me of that pulmonary diagnosis. Sucking air, bronchioles on fire, remembering, searing, mourning, counting, crossing, up, down, wave, breathe...

I though too about my friend, amidst her Guillain-Barre fight/journey/whatever story it will turn out to be. Whilst trudging uphill, slowing as the wind blasted harder, scrubbing my numbing face, speeding up over the rise, legs going numb from a cardiovascular system pushing past its baseline... Then flying down, down, praying that my bones would fall just so, GodBlessMuscleMemory, as the feeling returned to my toes.

I thought about writing, and the futility of planning to. And the absolute necessity of doing it, with or without the opportunity - just like running. Just like running, writing can play a major role in the saving of one’s soul. I remembered our conversations about spiritual and mental hygiene, about clarity and self-checking, about care for vulnerable populations, which are all of us. And about how to cram those hundred grams of protein into one person, every day. 

I thought about the hydrangea budding in my backyard, my first ever, and how my lovely auntie’s bushes would be fluffing out now. I thought about our laughing at chemo, over cupcakes we took to share with the nurses - celebrating our respective wedding anniversaries amidst general hilarity, and being so, so grateful for our respective kids that those marriages produced. 

I thought about the solitariness of running - a double-edged sword, and a persistent, highlighted feature in parenting, especially with kiddos who are medically fragile and/or have any kind of special needs. We talked about that, she and I. Alone time can be precious, and it can be just plain piercingly, exhaustingly lonely.

Good things, today... Being able to go. The wildness of the wind. Waving daffodils, a la Wordsworth, a la beloved Auntie. Remembering. Grief work in actual motion. Knowing how to spit carefully on an exceedingly windy day. Family with whom to remember, and to celebrate. 

This evening I’m heading to an event that my Aunt went to annually, as long as she could. It’s a resource fair and legislative forum for the local disability community. There’ll be Kleenex in my pockets. 

Go hug somebody, go read Lonely as a Cloud, and go, go, Go because you can. Smooch. 

Wednesday, February 21, 2018


It's snowing, its dark, there's a fire, and all the independent appliances are running, which seems like the perfect time to catch up.

The girls are busy as can be: E is a commuting geophysics major who secretly loves her hardest math and physics classes, even though she's there for the rocks; K made the dean's list in her first quarter in dual enrollment while working part time and playing as much music as she can; S is teaching four music students while rehearsing with two orchestras and studying, mostly for test preps. G is working and adulting, so we hear. And Q is, well, he's three months post-op from baclofen pump surgery, and trundling along. His scars look great. His para this year has him working with multiplication facts (he seems to know the answers - woo!), and he's having adventures with new school equipment (Rifton Tram), trekking like he means it, and practicing with door switches and innovative grips/handles.

This is a weird time of life, peeps. In the sixteenth year of homeschooling, I'm almost done directing educational pursuits. My role these days is more about chauffeuring, lifting, and tracking. S is ready to get her license, so I'll be down to just Q, mostly, with his five or six hours of therapies a week and rides to school (because we're not doing the bus at 6am, thanks). Well, and then hauling folks to the train station. The lifting requires training-for these days: 70lb chair will soon be 90lbs when the new setup arrives, and the boy himself is north of 82lbs. The tracking bit is mostly calendar wrangling, but also trying to stay on top of the congruence of All the Things - medical, physical, research news, anticipating emotional needs...

During Q's OT session today, I was reading Neuroscience News and frankly grooving on the report that the Salk Institute has identified 11 discrete groups of V2a neurons. This means that, beyond the two groups they had been able to see, differentiating limb movement based on location within the spinal column, by using single-cell RNA sequencing they're more able to nail down the difference in molecular profile, and thereby the difference in roles. This will eventually be enormous for stem cell therapies, especially for spinal cord injuries, but perhaps also for congenital diagnoses. The thing I'm finding compelling about this info is that Q's baclofen pump has revealed just how much he's relied on tone vs. motor planning to accomplish tasks. He's having to work over the lack of tone to manage reaching, grasping, stepping, and even some posture/positioning. Right now, his left-leaning upper thoracic scoliosis is kind of winning, a little bit. We've got work to do there, and will see a couple of ortho people March 13 to get that ball rolling (fingers crossed, eyes heavenward - at least the worst of all ortho surgeries has already been had). But the news about the V2a neurons helps the Qpuzzle to feel less... persistently opaque.

The things I know we can do for Q now include assertive nighttime positioning, countering that curve and stretching his hamstrings. Both of those are going reasonably well, with the caveat that he's pretty bugged by any phlegm at all in his throat, so not puking is prioritized over optimal skeletal/soft tissue supports. But that's just a little better than it was last week. Additionally, he needs more systemic feedback (proprioceptive and vestibular). He needs to be wiggled and jostled and bumped around. A lot. When he was smaller this was easier in that he fit nicely into a modified REI backpack which I wore while teaching the big kids, and he was easier to hoist into and out of a variety of other setups, including his WIKE. But the WIKE is tougher and tougher to get him into and out of. Between his own body formation and the low height of the WIKE seat, I can't take him out without the help of at least one burly child/sherpa, just because I can't get him into or out of it. I hear that there are nifty racing chairs out there, but I haven't gone down that particular rabbit hole.

There's more, of course. I think I'll have to come back to talk about the other equipment issues and how to keep Q out there, defying gravity. As it were.

Meanwhile, here's to a good, long sleep, and hugs to give. Mwah.

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.)