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. 

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