Remembering

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. 

Rundown

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.
xo

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.)

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.










P.S.   WE TOTALLY RAN A HALF MARATHON!!!   RAN!!!    A LOT OF MILES!!!!!!!!  
I wonder if there's a really inexpensive one nearby before Christmas..........

Beatus diem matris

Sometimes when this part of the week arrives, I feel like I've skidded into home, knees and uniform a mess, and dirt up my nose.  Another six hours in this day wouldn't have gone amiss.  I wouldn't be caught up, but things would have moved further along, which can feel just as nice as being all caught up.

Three and a half servings of Q food are cooling on the stove, awaiting coverings and the fridge.  His towels are running - extra pre-treat, bleach, etc.  The kids are all in bed, the dishwasher just stopped, the house is getting quiet.  Apart from the big fan (it was 83* here today), it's still enough that one might hear the plants growing. 

Speaking of plants, a favorite subject...  This week, a neighbor brought over a Shasta daisy to share.  It's waiting to go into the dirt, behind the Rainbow Ascot euphorbia, with it's chartreuse bracts and their little red middles, and behind the Lucifer crocosmias.  I dug the grass out of the crocosmias yesterday, much to E's delight.  She'd gone looking for them and thought them dead, their leaves blending too well with the misbegotten weed blades.  The nearby coreopsis and Strawberries and Cream yarrow are looking fluffy.  I hope the lilac is okay - no blooms this year, though the new growth looks healthy.  I think all the moving around and heat last fall gave the poor thing palpatations.

The callas are poking their noses out, and the baby hollyhocks are holding their own.  The irises (sent by a friend, all the way from her garden on the other side of the country) are budding, and promise a swoony blue, so far.  There are more buds coming up, and each one will be a new revelation.  I had a little Miracle-Gro potting soil left from a couple of summers ago, so that went onto the Pacific Giant delphiniums today.  They need fertilizing, but we haven't any, so this shall have to do.  They're making spires already, and will try for a full six feet in height by the end of the summer.  I can't wait to see them in full bloom, their little center "bees" all fuzzy gray, offsetting the deep blue violets as if they were velvet and watered silk.

In other news, we're emerging from the spring spate of Busier Than We'd Thought Possible.  In under a week, the girls had their big orchestra performances (Mendelssohn's 5th Symphony and Rutter's Requiem), and all their spring recitals.  E played viola for the first time in public, as part of her sisters' violin recital performances - quartets.  She also played a piano duet with each of her sisters, in addition to her own solo piano performance.  K also had a solo piano piece.  We've discovered the best way to beat K's pre-performance nerves: running a race the morning of the recital.  By the time she played the three violin pieces (two as second violin in quartet, one as her piece), she was loose and happy.  S played second and third violin in the quartets (in addition to her own recital piece), and couldn't have loved it more.  Still, we're all glad that particular week is done.

The punkins are all asleep, so I'm headed up myself.  Happy Mother's Day, all you lovely mamas.  Take good care of yourselves - you make the world go round.

XO.

Hiya.  Life's been busy here, full of lessons and practice, therapies and running, rhythms of chores and sleep and cooking and laundry.  I suppose it could seem endless, but it doesn't.  It's home.  The kids are having the usual triumphs and hiccups of childhood, plus their own variations on the themes.  To say there's a lot to manage these days would be a bit of an understatement.

I've been mulling over things this week and I guess I have more questions than I have answers.  For argument's sake, if you were in a position to know something, to have science and experience on your side, and to also know that this something would be a real solution for someone you know or someone you love...  What do you do when that person won't listen?  Do you let it go?  The answer is different if you're considering the needs of a child or truly helpless person, of course, rather than those of a fully competent adult.  What if that person is antagonistic?  Paranoid?

I'm mulling because I keep running into situations where someone involved has a very workable answer but the person who needs it most refuses or is unable to take in the significance of the solution being presented.  This happens often enough that statistically I have to be that person who refuses or is unable, at least once in awhile.  There's a humbling thought.

So I guess I try to hang back a little, if I suspect that I'm making a fool of myself.  I think it's useful to walk around the problem or puzzle and see it through new eyes, asking for input, often from unlikely or even contrary sources.  I don't know.  Sometimes things are just a mess.  Sometimes knowing something doesn't do any good.  Smart people have been wrangling the problem of pain and suffering for as long it's been around.  I don't have anything to add.  Just thinking.

Pax.

Praying without ceasing

I've been thinking about that call lately - to pray without ceasing.  Many years ago, someone asked me how, with three kids and one on the way, I found time to pray.  I answered then without pausing to think, that I prayed throughout the day, sometimes over the dishes or in the midst of changing diapers, soothing little ones, holding hands with their daddy while on a walk with the family, or doing laundry.  Stoplights are good, too.  That conversation stuck in my head because I hadn't realized at the time what I'd been doing.  Something about the sudden awareness, combined with the sweetness of praying peace and blessing over my people, big and small, while tidying also their more immediate, physical world, managing the quotidian...  Well.  I'm not going to claim that there's a reward in scrubbing toilets that extends beyond the clean toilet itself, but the combination of prayer and acts of service, done in love, with a joyful sacrifice?  The parallels to the big picture life we're meant to lead are stunning to me.  I continue to turn that conversation over in my head and find new things to think about it.

So the phrase has been bouncing around in my head again lately, especially as folks near and far have had a tough time, and sometimes their suffering looks to be taking the day, stealing the bliss out of the ordinary.  I was thinking back over 2010, and how glad I am that it's over.  There was this time, a stretch of weeks, wherein high drama, legal issues, health scares, kid stuff, financial swerves, bad news, and sundry emergencies were popping up not more than 72 hours apart.  It was a lot to take in.  I think right in the middle of all that was when I started pondering those words again.

As to what it means?  How to apply?  Well, I'm not really comfortable throwing out some sort of mandate or absolute, but this is what I think about when I think about praying without ceasing: We're supposed to take care of each other.  Sometimes it's a grace-filled, rich and profoundly rewarding thing, sometimes it's a balancing act, performed with swords and running chainsaws.  But it's the huge, all caps, shout it from the peaks, why of this life.  Jesus modeled it, told stories about it, asked it of us:  Love one another.  Those little spaces of prayer hold up our arms while we're working away, trying to make sense of things.  Those little spaces of prayer blunt the swords and chain saws, and allow grace to fill up and overlay not just the high points of time with our people, but also the disappointments and emergencies, adding to our resilience, enabling us for more than we might have suspected we had inside us.  And during those minutes, hours, weeks, whatever, when it just. keeps. coming?  Wow does that resilience, that focus and connection, wow does that make the difference.

Here's someone I "met" through a friend, someone who has already in her life as a young mom had the full allotment of opportunity to practice resilience and praying without ceasing.  I think she'd appreciate your prayers.

Pax.

Good life

Such a lot of water under the bridge(s)! 

Let's talk about Mr.Q first.  He's has been sleeping... well, not great over the last couple of weeks, resulting in new local peaks in pharmaceutical caffeine use (by moi).  The rehab visit went well, but I'm having trouble wrapping my head around the A & P aspects of the selective dorsal rhizotomy discussion.  It would seem that new, more delicate techniques and growing experience in neurosurgery are allowing kids who have inappropriate lower limb tone to benefit quite nicely from a procedure for which they would not have previously been candidates.  Hooray!  So perhaps that would be an alternative to the Baclofen pump.  The thing is, every time Q's Baclofen dosing has increased, so has his swallowing ability, vocalization, overall healthy muscle tone and mass - all of these are huge.  Just huge for him.  So at this point, I'd want to go ahead with the Baclofen pump at some point, even if there would be excellent gains to be made in the rhizotomy - Q needs those upper trunk and extremities benefits.  I think that's part of why he hasn't had any remarkable respiratory events (requiring steroids of any kind or breathing treatments) in almost two years.

But back to that "rhizotomy" word.  I usually take in all the info for these appointments, go make notes, read whatever reports that are sent, synthesize with other things I know about Q, and on we go.  But that word...  It means "to sever nerve roots in the spinal cord."  I just kept looking at his little back, then at the drawing on the white board, showing how certain little roots get clipped and where.  His skin is all soft and unmarked there...  I do get that the hip surgery and a possible placement of a pump also require incisions into that perfect little skin.  There's just something about this procedure that seems somehow worse.  As if there's a hierarchy for incisions...  I still have that spot picked out in the backyard.  For puking. Which doesn't seem at all theoretical to me...

Q had two evals on the same day with the OT/PT pump placement team.  I don't have reports from them yet, but I expect them to say that a pump would be appropriate when Q's tone has reached the point that we feel life is unworkable here.  He's tighter now than he was a few months ago, despite PT, massage, stretching, and Baclofen.  So dressing is tougher, as well as arranging him for sleep, transfers for bathing, feeding, etc.  As much as he wants to help, there are definitely certain losses in progress.  He is more volitional or intentional (both?) about his own position - working to hold himself up in his chair before he's completely buckled or strapped in,  holding up his hands for dressing or undressing (and laughing like mad as his fists emerge from the sleeves), lifting his pelvis for pants or changing.  He's working more purposefully, but he's tighter as he does so, if that makes sense.  All things to consider.

I know there's more, but I need to sleeeeeeep (whine).  We're running  four days a week as we train for a December 5K.  The girls are noticing their muscles are different, which has provided neat segues into conversations about body image, confidence, and how to be the best person we can each be (vs. "fitting in" and trying to be like someone else).  We've also got the usual subjects on deck for school, plus it's been fun to discover that Q is studying a little medieval history in his kindergarten class while his sisters are digging into it  at home.  G is finding his feet at high school - discovering the need for hard work in addition to good test scores.  And what a lesson to apply throughout life:  one must show up for and complete the difficult things as well as the fun or easy.  (insert eyebrow waggle)   In the meantime, he's enjoying after school activities and hanging out with neighborhood friends, though his mother wishes he had more homework because kids these days need to work harder!!  (Heh.)

So because of the above, I've got to get to sleep.  My syntax is suffering.  And since I've just poured lemon ginger tea down my shirt...  G'night. 

Whoosh

This is amazing.  Transcendent, I think...

Light reading

Neuronal migration defects.

Spot on

Sissy Free Task.  Indeed.

Since I'm here...  The ongoing prescription argument is frustrating.  Q needs the solutab.  We've tried the liquid proton pump inhibitor (neurological side effects), Prilosec OTC (didn't work).  He can't take Zantac, because it's in capsule form.  There are little packets of soluble powder that could be mixed with sugar water, but that's omeprazole, the same med as Prilosec, which didn't work.  Meanwhile, there's no word that the paperwork is getting where it needs to go, and the manufacturers have either stopped making the med permanently or have been on backorder since June.  There are non-generic solutabs available, for which I will still be paying out of pocket, but instead of almost $6 each, it's more like $10.  So.  As soon as Q is on the bus in the morning, and just before the girls and I sit down to contemplate the birth of astrophysics, fractions and variables, predicate nominatives, and the medieval-era invasion of Islam, I will make the rounds again on the phone.  I shall strive to be...  Well.  Let's aim for patient, shall we?  I first began this conversation in May, so I think the bar of patience is plenty high.  I do have the phone numbers of all my state reps, and maaaan...  I'm considering using them.

Time for sleep.  Peace out.

Onward

We're now in the middle of the week in which we do our church's version of VBS - with dinner served and lots of cool projects.  So much fun!   G and E are serving as "table captains" which is sort of like a camp counselor role to the other kids.  E has a table of four little girls and they're all doing these projects together.  So stinking cute!

The director for our camp last week gave me a jar of dahlias Monday evening and thanked me for bringing Q to camp.  I cried.  She told me that there were so many faculty and staff, and other parents, who commented on our neat family dynamic and what an amazing job the bigger kids did with Q - especially when we were seated on the front rows for the concerts and Q was loving all that live music, and wiggling like a boy who'd been sitting still too long.  I hugged her and cried.  How incredibly kind of her to have taken the time and acknowledged both the beauty and the difficulty in one fell swoop.  It is both.  Always both.  But the former far outweighs the latter, in sheer mass.

And speaking of all that Life business...  You know, I've given up a lot of thoughts about what constitutes an "ideal" family.  I was somewhat surprised to discover, rather recently, that I really do still miss the partnerships to be found in a good marriage.  Even a barely civil marriage provides certain benefits to the spouses, most of them simply logistical.  But even in a just better than barely civil marriage, those losses begin to be keenly felt.  Imagine how lovely it would be to know that the end result of one's hashing things out with one's kid didn't then rest solely on one set of shoulders.  Support in or for one's ideas is sweet, and deserves to be treasured for the gift that it is, of course.  But nothing replaces that other parent "having your back," you know?  In all those small but important ways.

Hope you're resting well and got to spy some meteors this week!  Godspeed, lovely people.

Immersion

So we're at Suzuki camp.  Q has had a hard time settling the last three nights and tonight, in addition to us singing him The Two Grenadiers, in parts, G brought his viola and quietly played Q out with Humoresque.  I've frozen those moments in my head so I can have them always:  Q draped across me atop his bed on the floor, drooling on my shirt, almost trying to still fight sleep, K in her bed, S snuggled with grandma in her bed, E in the shower, and the giant boy who is taller than everyone else much of the time these days sweetly playing his punkin brother to sleep.

There's plenty of irregular nonsense, as is the case with Life.  There's a crazed seagull outside the window right now, for example.  And G is probably not yet asleep, though his sisters are, and he will miss breakfast in the morning if he isn't out soon.  There's the part where we're figuring out the new versions of the parent-child and child-parent relationships - no easy task even when everything else is smooth and lovely, much less with a few irregularities thrown in.

However.  That young man who played for the littlest guy of the bunch also let me know that he's decided against looking for a job right now, though he'd need one to get a phone, which he badly wants.  He's forgoing the job so he can focus on succeeding in school.  He's making plans.  And his sisters aren't far behind.  This is so incredibly awesome.  I know people often report the empty nest thing, and I'll probably have some of that too, later, but oh wow, is this exactly what all the hard work has been for!  I just love that they're in the middle of the progressive circle that takes them ever nearer competent adulthood.

And this week has been great for us all, in different ways.  The teacher who trained under Dr. Suzuki himself captured G's imagination, the one who dances with all thirty-five of her sweet younger kids while they play with violins atop their heads has S smiling like crazy (she loves all her teachers).  E and K were given tiny things to work on that will improve their performance in gigantic ways - much of which carries over to Real Life, too.  Q wants to go home with his Rhythm teacher so he can always have such fun.

So hurray for a week well spent.  For kids who've taken great advantage of the opportunity (and are willing to work and save for the next go round).  And hurray for the bazillion people who've helped with Q and all manner of support roles.  We wouldn't be here without you.  Thank you so very, very much.

In my running around campus and I've collected about three miles per day, huffing and puffing as we go.  This campus is built on a hill, so it's either lots of stairs for me or hauling Q up and down hills to handicap accessible entrances.  I forgot to mention when  posting about the news of Friday (ortho appointment) that Q weighed a little more than 40 lbs.  Hooray!  And so does his chair.  Not hooray!  So when "sprinting" behind him up hills, I'd like a little fanfare.  Or a sparkler.  Or just a bottle of water might be nice.

Sleeping time now.  Yikes, but we're tired.

Still

So we've had an unusually big week.  Between the whooping cough exposure scare, the orthopedics appointment, and sundry volunteer projects, we've slid into Friday just about toodled out.  Among other exciting details for this week is my ongoing argument about coverage of one of Q's meds - it's been a particularly bad time to pay out of pocket for a generic which is running almost five bucks a day.  But here we are.

On Thursday we got to help put together the bound schedules for the Suzuki camp which begins bright and early Monday morning.  The kids have been practicing the music for their groups as well as their pieces for the master classes.  It's a little surreal to contemplate, how all their effort comes together for them.  They've been taking violin for three years now, G has had about a year on the viola.  It's pretty thrilling to watch and listen to them play in groups, and their solo performances are coming along nicely - E especially so with fiddling.  The bigger three have been taking piano for almost six years, S for five.  K and S are streaking out ahead with piano:  K has been pushing G and E for a couple of years now, while S just recently announced that she believes she's at the place where she's now just going to play for fun, it's that nice.  See me grinning?  I listen to them these days with my heart in my throat, amazed at all this progress.

About Q's ortho recheck, then.  The x-rays this time show his left hip out about 75%, as compared to the 60% from earlier this year, with an increased slope in the socket.  His right hip is out a smidge farther than it was last time, but not much a'tall changed, though that socket appears to be somewhat more sloped as well.  We discussed the options for surgery, for waiting, for injections into Q's thigh muscles.  I asked the surgeon what he'd do if this was his kid.  He grinned, self-deprecatingly, knowingly, and said that there just isn't a right answer, but given how engaged and responsive Q is*, he would go ahead with the surgery to change the angles in both femurs, build up the left socket, and look at the right socket once in surgery to determine whether or not he needs that socket built up too.  There's a 5% chance that Q would need a transfusion (the pelvic area is highly vascular) with both femurs and one socket, but about a 40-50% chance of needing a transfusion when the second socket also requires work.  About 3% of patients seen through this clinic (children's hospital) require another surgery to tweak something or make further changes after the initial surgery.  This is important partly because if that right socket needs work, better to do it all at once, because it's a not-fun recovery.  So if there's a 97% chance that the first go gets it all, best to do it then - which leads us to wait a little longer.  The ortho guy said that since there's been some small changes in that side that we'd have a better idea in another six months.  So Q goes back in February for more pictures and another chat.

In the meantime, we've therapies, dental appointments, orthodontist appointments, school, school, and more school to do.  Q begins kindergarten in a few weeks (gak!).  G begins the tenth grade (how did that happen!?) and thinks about getting a job to pay for all the cool stuff he wants to do.  And the girls push on ahead in their studies, too.  I may be a little bit of a geek, because this all seems like pretty exciting stuff to me, this growing up and out of the kids, this new school term.  This stretching and testing of their ever stronger and more capable wings.

*You may recall - I hope I mentioned this before - that there's a study out of Australia indicating that the more engaged and "verbal" a child is, the more likely he is to have pain with subluxed hips.  In fact, it's nearly 100% vs. about 40% for kids who are less interactive.  In other words, there seems to be a connection between how much a child is trying to venture into or respond to relationships, typical presentation or not, and his or her pain levels.  This fact drives me a little crazy.  Imagine all those punkins who have pain and can't communicate it.   Thinking about it feels like toothpicks in my brain.

I had a moment on my back porch (my back porch!) with a nice glass of ice water, checking out the stars as the sky emptied its light into another hemisphere.  You'll be relieved to know most of them are still out there.  The backyard rocks continue to proliferate like bunnies.  I've had some help with the weeds - thank you (you know who you are)!  And the wee little discount/saved from death plants are looking like they may yet choose life.  It smells good out there, all sweetly herby and verdant in our wedge of earth.  It's quiet and a little damp in the coolness of the day.  Dewy, I guess. 

Peaceful. 

Peace-filled. 

Come on over.  I've got ice water.

Tools

The Four Horsemen of the Apocalypse.

Crazy teenagers.

Crazy parents.

Punchy-tired

We are wiped out from the big weekend activities.  Q rode the cars again in the Challenge Day race.  This year the founder, Leo, had added a seat back for the boy to be strapped to.  They used it last weekend in a different city for a kid with similar physical presentation.  It was so fun!  Q had a moose head wraparound neck support, and he grabbed onto the car right away and just rode like he was in charge, man. 

When he wasn't riding, he was having a rest in the van with G (so cute, the pair of them all sprawled out), or even better, helping G or E drive this.  There wasn't a roof on it, and the steering and brakes were located on sticks at the hips of the riders, rather than out in front as handlebars.  He loved, loved, loved it.  I've been thinking about how to get him on the road on a bike, and this would be one awesome option.  There was a bag at the back, strung between the two joined bikes.  It would easily hold most everything Q would need for a day out.  Amazing how much fun he had as soon as he was in motion.  He's definitely a little adrenaline junkie in an uncooperative body. 

We're waiting for the modification piece for his backpack - how cool will that be!?  It's been a few days since I ran - have to get back to that tomorrow.  Since running longer distances and doing so more consistently, plus walking lunges, etc., I can easily tell a difference between last summer and this:  Q is easier to hoist and easier to haul in the pack.  How nifty, right? 

Now to figure out the next bits of life:  G and K got running shoes today, inspired by E's PT successes which correlate mostly to her shoes, though the exercises sure are helpful.  G went parallel parking this afternnon and needs a viola bow and would love to have a new violin bow as well.  The last violin bow he tried and thinks still would fit best was more than $700.  Gulp.  So we'll be praying over this - the viola that came from Goowill and makes such nice sound.  ;o)  The house windows need screens and I need a big, bad, load of dirt to come here, be free, and make friends with the rocks.  Until the dirt tosses the rocks out, on sheer principle.  So there, rocks!  Heh.  I'm afraid I've constructed all kind of scenarios in which the rocks just go poof.  Of course, so far, the best way is to have cousins over and to announce that anyone who plucks a weed or moves a rock will get a penny apiece.  K, of course, is the fastest - I owe her almost $4 so far!  And the other girls each made some money off me too.  Hooray!

The Zyrtec has taken over.  Q's quiet so time to sleep!  XO

Week end

I've been chewing on things this week about how to mold one's family culture, what input is most effective for kids as they grow their wings and look to leave home.  One of the things that seems a constant recurring theme is that I have a lot of friends, some real, some "imaginary", who require a LOT of their children.  Some of these people are thought of as tough, true (like that's a bad thing), but most are thought of as responsible parents.  People who are busy helping their kids to be people the rest of us want to be around.  As opposed to say, children who walk around having tantrums over the silliest of things, or demand that occasions suit them at the cost of others' needs, and more.  I don't know that I have any conclusions on the matter because I'm kinda in the thick of it, here.  I do know for sure that two parents in the same household, a team working together for their kids, whether or not they agree on even as much as fifty percent of how to proceed, is making the process that much easier for those who have it. 

I'm out early in the morning, so shall sign off.  Hope you all have some sweet rest and a very productive time in whatever place or area you most need.

Apropos of Nothing...

I'm thinking on this as an excellent item for inclusion in life skills discussions.  Perhaps difficult for some parents, but when thinking about things like adrenal exhaustion and long-term consequences - man, seems like a no-brainer to me.

In other news, the kids are home.  Yay!  The morning activities prior to my getting to the airport demonstrated the growing complexities with Q.  Again.  Thinking on that for now, and hoping for forthcoming solutions.

I don't know how to speak about the kids visits with their dad.  They love him so much, and rightfully so.  He's their dad and they need that relationship, that champion who only shows up in daddy clothes.  And also, there's fallout.  Uncomfortable questions.  Sadness at the very real losses resulting from his absence in their daily lives.  So.  Lots of tears tonight from one of the punkins.  It can be hard to keep one's head together under the abrupt changes occurring with visits.  Q had a hard time eating tonight - as he does during the beginning days of the big kids' absence.  Here's to an easier day tomorrow.  Yes.  That.

Gotta nail down a few of life's details before I hit the sack.  Huge shoutout to the people who took care of Q so I could go get the rest of the kids.  Hope life is being kind to you and yours.

New Post

This is all I have to say:  I'm going to go read in bed.  For the first time in...  (counting madly on fingers)  ...I give up.  I used to read, but then we moved.  And.  Life...  I don't know.  Obviously, my vocabulary and syntax are suffering from the drought.  New input required.  Back later.

Hope your June weekend is summery and light, involves some sort of pico or chocolate or both, and puts you and all those you hold dear right with each other.  Spit spot. 

XO, all you lovely people.

Home again, home again

Thankfully, sans the proverbial hog.

We drove over to the kids' dad's alma mater for the weekend. The orchestra played for the university church service, and our quintet played violin and piano selections for my grandma and her friends at her new assisted living digs. Well, it's a septet, really, with Q the brave and the dancing cousin. (Q is brave because he tries not to cry when the music stops - his fight with his pouty lower lip is pretty charming.)

My mom came with us and I think we mostly had a rather grand time, despite the difficulties. Milkshakes help the children perk right up, and do a pretty nice job of smoothing things out for the adults too. I can't recall a weekend with more mislaid purses in it. Or one in which the lift for the tailgate suddenly, and I mean poof, gives out. Picture me with bugged out eyes. My dad was researching parts (in his next life he'll be a fab master mechanic), but until I get that fixed, I shan't be taking Q anywhere by myself. Someone has to hold the tailgate door up while another big, strong person hoists the chair into the back.

Never a dull moment, I tell ya. ;oD

I think we're all concerned about my grandma - seems like little bits have disappeared over the last few times we've seen her. Just little losses, but striking when added up. Another really tough visit was with a former professor of mine who is in a rehab facility for the time being. She has a glioma that was initially treated as something else. She, master of words, doesn't sort and use them in the same way anymore. But her smile is just as bright as ever.

And G has his learners permit. I should be bald by the end of the week. No, no! It's not that he's bad. He's fine. Quite good for the experiences he's had. It's just regulation nerve wracking.

Heavens, but I hope this makes sense. So tired! As we were nearing home this evening I wondered how much of these years the kids will remember as "mom's tired years." Time to work on *that.*

Hope you're having some sun, a little rain, and all kinds of genuinely helpful things. Back with more later. (And if you saw the first incarnation of this post, let's just giggle together over it. Snicker.)