A generous education…

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We finished up our school year just under a week ago. We’ll be taking the rest of the month off and a teensy bit of August, and then we’ll jump back in. I wasn’t exactly intending to become year round schoolers, but given our wacky and often unpredictable schedule, it fits just right. Looking back over these pictures just from the last month or two, my heart is so full. This year was so, so, rough, but I look back over these and I just see all the fun and joy we were having in the midst of it all; how much learning was going on even when I couldn’t be intentional about it. I look at these pictures and see my small intention and God’s mighty increase, filling us up. This year was full of so much overflowing grace. I can’t begin to express how much happier and more joyful this year of homeschooling has felt compared to our past homeschooling years prior to public school. It is like night and day.

And my goodness, did the test scores show it. To me, testing is for the birds and a ridiculous anachronism of our industrial schooling model, and a rather odious one. I was so stinkin’ nervous about the stupid things. Our state requires them by law, and given all we endured this year, I was a ball of knots going into it, especially given some of the learning challenges we face. I should have known better after trusting the words of wise counselors. Everything I learned from Andrew Kern and Matt Bianco, Sarah Mackenzie, Christopher Perrin– about mastery, about scholé- and put into practice- showed in those tests.

The proof is in the pudding, dear readers. I’m a restful teaching, classical learning, read aloud lifer after this. 😉  It’s not that these arbitrary numbers matter, but it gets the state off my back, and I, for one, am super grateful. Y’all, I cried some happy tears getting those results back. It was so encouraging to see. I had nothing to do with it. This was all them, all God. He is faithful. 

This is a post in the continuing series, Wonder and Inquiry.

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Glimpses of green…

nativesoil threesisters beautifulmess familiarplaces

It feels like the whole world has turned upside down since I last wrote. It’s an odd feeling to watch my own quiet home world start to right itself while the greater larger world outside is upending itself. I keep thinking of Mother Theresa’s admonishment these days: If you want to change the world, go home and love your family. It starts at home.

I don’t have any eloquent words to give today.

Our life is finally finding some sense of order after such an intense time, and with that order, so many challenges are coming to light. It kind of feels like the heaving, suck-air, sink to your knees feeling after you’ve run hard and crossed the finish line. It hurts. Your muscles are screaming with the need for rest. That’s us right now. It’s showing. Relationships with and between our children have been frayed by the constant stress. Issues that had to take a back seat for one reason or another are all announcing their presence. Loudly. There is a pretty strong temptation in the face of such overwhelming pressures to try to address everything at once. I’ve walked that road, and it only ends in more pain. You’ll slam flat into the wall of burnout in about six seconds flat.

Slow and steady win the race here. Slow, steady, faithful steps. First one area until it calms down. Then the next. I have to keep reminding myself of that, or I’ll slip into despair pretty quickly. It took two years to get us here. It’s going to take at least that long to heal.

Where would we be without the friends and community who grabbed hold of us and pulled us to shore? So lost. It is that knowledge that tells me that even though I’m pretty scared and overwhelmed right now by this unfamiliar shore, we won’t walk it alone. Already we’re getting more strands of rope to hold to, more tools in our bucket. A map is forming. It’s this same knowledge that is giving me hope for our larger world. We can choose love. We can choose to extend hope. We can choose community.

New worlds…

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I remember staring off in middle space on warm afternoons, chin in hands on a high school bleacher. My friends scrambled for the football below, thick with sweat, working towards unseen goals, games to win or lose. I tried on different futures those hazy afternoons- What if I became an artist? What if I travelled the world? What if I never got married? What if I did? I would glance down at my friends’ muddied faces, marveling at their perseverance, and then escape back into my thoughts. I never considered that I could do what they were doing- that I could fix my eyes and fight for every inch and make a mark. I know my school girl self. I thought I had faced hard things. Maybe I had. But I was untested in the arena of life, and I couldn’t fathom that I’d have to face storms so wide and deep that I’d swear I was drowning. In some distant way, though, my school girl self wondered what it would like, facing storms. Would it all change overnight? Would it be a slow burn? The heartbeat of the question underlying all those school girl wonderings- will I be able to handle it? Will I be enough? Will the world fall down?

Dear younger self,

  I know you have a lot of questions, but all I’ve got for you is Doctor Who quotes. You haven’t heard of the show yet, but it’s worth it. Don’t skip Nine. (Trust me, it’ll make sense when you get there.) But anyways. Here ya go.

“When you’re a kid, they tell you it’s all… Grow up, get a job, get married, get a house, have a kid, and that’s it. But the truth is, the world is so much stranger than that. It’s so much darker. And so much madder. And so much better.”

“The way I see it, every life is a pile of good things and bad things. The good things don’t always soften the bad things, but vice versa, the bad things don’t always spoil the good things and make them unimportant.”

Life is going to be so much more than you ever expected. Keep your head up. And when a handsome country boy asks you on a date, say yes the first time.

Love, ME

The truth is, you can only write about it using conjunctive phrases. Youth makes you think that every answer will be exact. Life teaches you that everything is a both/and, and rarely an either/or. The storms will take your breath away and put wind in your sails in the same sentence. Push and pull. Ironies and contradictions. Very, very few absolutes. I can’t help thinking about the Doctor’s wise words lately.

Simply put, we returned to UVA. We had to leave in the middle of night to get to the appointment on time. Waiting for us was the elusive diagnosis that has been lurking in the background for two years, frustrating her doctors, making treatments harder:

Hyperimmunoglobulin D syndrome (HIDS), [Mevalonate Kinase Associated Periodic Fever Syndrome]

Your life changes all at once and not at all. That’s what storms do. You finally know what haunts your girl. She doesn’t act any different. She has the longest stretch of good days she’s had in months, while the Vacutainers line the counter in the lab, her life force distilled into numbers and titers. Life gets insane for days on end with the back and forth, and she stands there giggling, looking for all the world like a healthy kiddo. She plays in the water like her whole life hasn’t changed.

I wouldn’t have it any other way.

It’s our new world.

A new world in which she has not one, but two, chronic life-long autoimmune diseases. A reality that means that she will never have a normal functioning immune system, that she will always be more susceptible to illness, and that her anemia will most likely also be a life-long fight, a specter always in the background. Two auto-immune diseases that have no cure. You can add all the math and the answer will always be less than you want it to be.

But it’s our life. Her life. Our new world.

The last two weeks have been ridiculously intense in ways I can’t even describe. There is no such thing as a good mail day anymore. James and I have faced levels of exhaustion we didn’t think were even possible anymore. It’s our life.

The same two weeks, friends slipped in and took care of things we couldn’t. They dragged me away to quiet harbor, they made sure that my children’s curriculum will be taken care of for next year, they made me laugh, they made me think, they made me remember that there is a much larger world outside of this intense storm and that land is close.  Our new world.

I see green on the horizon.

Navigating…

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I knew that the drive to Charlottesville was going to be difficult for me, mentally and emotionally. It’s a three hour drive. Three hours for things to churn in my brain: did we make the right decision to come up here? What are they going to say? Is the news going to get worse? Worse still, is it all in our heads? Are we imagining things? and on and on. I had prepared for this eventuality; knew that I need a good companion to keep my steps. Twenty minutes into the drive and trying not to sob outright at Christie’s ability to nail my worry to the wall, I knew I had chosen well. My companion? Roots and Sky by Christie Purfoy. I can’t even begin to wrap words around what her writing meant to me that day, and how her words “are a honeycomb, sweet to the soul and healing to the bones” (Prov 16:24).

She divides the book into seasons, and I barely made it to the end of Autumn before we arrived at our destination. I’m saving the rest of the book for our return trip, which we will make on Tuesday. I wrote that day that:

I feel like a huge burden has been lifted. The specialist and his resident were really wonderful; quite a change from what I’m used to dealing with. I feel nothing but relief, even though it means our life is going to get even more complicated in the next month. (We also have a slew of appointments at Children’s the week following this co-team appointment up north.) Call it outrageous hope, but I think the answers everyone has been looking for are just around the corner. And after that, *healing* for Ellianna. Mighty powerful word, that.

With nearly a week’s reflection, I still feel that way. Many of those unspoken questions I was trying so hard to ignore on the trip up were answered, fully and honestly. I had questions answered I didn’t even knew I had. Yes, Ellianna is a sick little girl, and yes, her body is struggling, and yes, we need to do x, y, and z between now and the next appointment, which I’d like to be a co-team appointment with a rheumatologist. Has she seen a rheumatologist at all? (She had, nearly two years ago, in the hospital, but not since.) He and his resident explained some of the symptoms, why they happened, what was Celiacs, what was the anemia, and how all these other symptoms didn’t fit with either of those or with the mononucleosis she had previously. They also mentioned how the mono alone could give rise to other issues, especially in someone so young. Do you know how rare it is for a child under the age of ten to have it? Even more so a child three and under? The statistics…. (yes, we had known that.) He discussed how the diagnsoses Hematology were considering might explain and might not explain things, but how her blood work didn’t seem to match up with the one diagnosis, but that with Hematology seeing her soon, they would explain their own thoughts. The most in depth of questions were asked, all of her blood work was reviewed and looked at closely. He looked at me somewhat ruefully and said, we won’t be doing anything concrete today because I want my colleagues to see what I’m seeing, but take heart mom, we’re going to get this straightened out, and you’ll have many more answers when we see you next. We just need a little bit more time to study her case in depth and get them on the hunt. And so, in just three short days, we will rise in the wee wee smas of the morning and travel back north.

I am choosing, with Christie’s gentle guidance, not to give memory a power it has no right to hold, and grabbing hard and fast to Isaiah’s prophecy.

Where you lay your head…

pretties worthnoting Dogwood.

A few weeks ago, I woke up with a terrible crick in my neck- the type you get when you’ve slept all funny. You know the type. It’s mildly annoying but usually fades by midday.

Tight as a drum, my neck never did loosen that day.

When I woke up the next morning, it was even worse.

This continued for four or five days. At that point, I began wearing eight hour heat patches on my neck, because without them I could hardly move. Driving was excruciating (and probably dangerous) because I really couldn’t properly turn my head.

By day three or four, James and I were both discussing that perhaps I should make an appointment with our doctor. I was beginning to get knife like pains all down the one arm, and we began to wonder if I had aggravated a head and neck injury I had sustained falling down the stairs a few years back. I kept demurring, saying that if it hadn’t gotten better “on Wednesday, on Friday”, I’d call Dr. B.

One day slipped by, then another. The pain didn’t go away. I knew I should call, but I just couldn’t do it.

I didn’t really want to know.

I’d rather live with the pain, I told myself.

We couldn’t really afford for me to visit the doctor. Just a week prior to my neck starting to bug me, the kids had come down with awful colds that sounded like they were turning into bronchitis. I waffled about what to do, calculating in my head that it would cost $150 just for my six children to see the doctor, not counting the cost for any medicines they might need. In shock, I posted this alarming revelation to Facebook, where, thank goodness, a dear friend suggested we try a mucus-reducing medicine that we could get over the counter. This did the trick, and the children all improved pretty quickly after that. Crisis avoided.

I am struggling to come to terms with this aspect for us. In a normal year, having to pay $150 for all the kids to see their pediatrician would not sink us and would be just a blip on the radar. I’m sure I’d have groaned a bit but it’s not like it would have really “hurt”; now every single penny is queried and interrogated before we send it off. It’s just hard.

Even more so, I just truly, really, didn’t want to know. We have been through so much that it felt a bit traumatic to even consider why my neck wasn’t healing. What could it be now? What will I have to go through? I can’t afford x-rays or MRIs or CT scans. I just couldn’t even make the jump.

I’m sure that sounds strange in a way. It would sound strange to me if I hadn’t gone through all we’ve been through in the last two years. There’s a weariness and a reticence to lift our heads. Sure, perhaps the vista will be okay, beautiful even, but after two, almost three years of train after train hitting us, we’re pretty afraid of what the light ahead might be. We say to each other “one foot in front of the other” daily, this mantra that keeps us steady- but every day that slips by it feels harder and harder to lift that foot. You get to a point where your prayers are simple and wordless and near-groan. Lord Jesus Christ, Son of God, have mercy on me, a sinner. There isn’t anything else left. Just that.

Something being wrong with my neck or shoulder just felt burden beyond us. Both in denial, we let it float.

About the eighth day of intense pain, as I was crawling into bed, I realized my pillow felt a bit funny. (I’d honestly been too tired and distracted prior to this evening to really pay attention to it.) I have a hybrid memory-foam/air pillow that can be inflated or deflated depending on need or personal taste. Even with the air completely deflated, the pillow is far more supportive than your average feather pillow. We had invested in this pillow years back when we realized it relieved the constant pressure that my mild scoliosis causes me.

You can see where this is going, can’t you?

My pillow’s air valve had somehow come loose, releasing all the air in the pillow, leaving only the memory foam. I refilled it to the point it should have been and went to sleep, a curious hope filling me.

The next morning, I awoke in substantially less pain. A day later, and the pain was completely gone again.

That subtle change- the air missing in the pillow- multiplied by the stress I’ve been feeling lately equaled excruciating neck pain.

Something so very small, just a tiny shift in perspective.

I laughed and honestly, cried. Such a small, seemingly foolish thing. My brain had begun to churn “what else is wrong NOW?” James and I were trying to figure out how to adjust to some new threatening reality, and the reality was a simple air-valve.

I’m not saying that everything is so easily fixed, but it has made me wonder. It’s a new conversation I’ve having with myself in addition to the “one foot in front of the other”- where’s your head? I think—it’s good for me to step outside of things and check for air valves. Or, at the very least, I’m starting to wonder if we can switch metaphorical pillows- thought processes. It’s hard, I’ll openly admit. I’m struggling to really process at all. I feel very a-emotional, unable to really engage, shut down. I’m told by my priest that this isn’t unusual- it just comes with the weariness of such a heavy load for so long, the way of a mind protecting itself from stress. Just don’t get stuck here, he says.

Even as I write this, as incredibly heavy as things feel, they are beginning to shift yet again. The doctors tell us that Josiah is as stable as he will be for quite some time; that he’ll only require occasional outpatient evaluations from time to time, and, with great hope, healing. From what they are telling us about Ellianna, even as they narrow down the culprit, she is stabilizing. Both possible treatments for both possible diagnoses will be more medication than treatment based; we probably won’t have to spend long treatment days in clinic. I can feel that our life is starting to settle down; that recovery and healing are on the horizon. Our life will never be the same as it was before, but it will be a much more stable life than it has been for the last year and a half, especially. It is taking everything within me to trust this bright hope.

We head to University of Virginia today to see a specialist they want Ellianna to see. It’s a three plus hour drive; a new chapter in her journey. I have no idea what it will bring and I can’t conjecture what it might mean going forward, but I am choosing to look on this with hope, not fear.

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