The hazy space between…

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Our hospital adventures are ended for the moment. I wrote last week on Instagram that:

Things feel all hazy and “off” to me today. I’m struggling to process all that was learned yesterday. Josiah is running around, happy, having one of his best post-op experiences to date. Ellianna is feverish and ill and has stayed curled in my lap all morning. Josiah’s diagnosis is life-long. We know that in a year or so he might find a “new normal” with treatment, but yesterday marks this transition from “it might get better with xyz” to this being a constant presence for the rest of his life and “here’s how we help him be comfortable/as normal as possible” and I think, there’s a bit of a grieving process with that. It’s bittersweet, these things. [The things they are diagnosing for Ellianna mean] we will be waiting six weeks to two months to know for sure before they can attempt treatment. It’s overwhelming. And hard to watch. We as mamas, we just want to help them feel better and it is the worst feeling in the world to be helpless. Keep us in your prayers as we go through this adjustment. Xoxo

Now a few days out, the haze is starting to fade.

Josiah is such a monkey. And the problems he faces are almost invisible to everyone, even me, on a day like Thursday was. He has boundless energy, that one. He bounced back brilliantly from surgery and was most definitely his monkey self on Thursday. I found it a bit disconcerting honestly, as usually the day after a surgery he is quiet and cuddly. A day after they basically told us that his nerve damage was extensive and life-long; that there was nothing they could do to to heal the damage, just manage the effects. It won’t be so noticeable now, while he’s young, but as he gets older…it made me grateful all over again that we have chosen to homeschool him. Life can move on his schedule, around his needs. He was being himself that day, his happy, joyful, peaceful self, and once I got over the feelings of weird disconnect, it was almost as if he was saying out loud, “Don’t worry mama. I’ll be fine.” I was grieving for him a bit, and there was space for it; but I also caught his hopeful energy too. We’ll figure this out.

I snapped the picture of Ellianna a week or two back. The children were playing dress up and she had put on her brother’s army uniform. It just seemed fitting for my fighter of a girl. After months and months of detective work, I feel like we are finally closing in on a culprit that would explain her continued illness. They added cyclical neutropenia to the potential autoimmune hepatitis, and the blood tests that eliminate or confirm both are the same. They changed her anemia status too; it it now anemia of chronic inflammation (drain on the system), not iron-deficiency anemia (red blood cells not carrying/picking up iron), which is a wonderful improvement.

I at least know from all this that we have done our best job with her gluten free diet and supporting her from a rich whole foods/plant based approach- her body has the best tools to continue fighting, and it shows in the healthy Celiacs numbers and the anemia status being switched. That is an incredible burden off my mind. We have struggled so much to adjust to this new way of life, the incredible costs involved, (which is a whole ‘nother blog post! Why?!?), and all the while, I’ve been so troubled that we were “doing it wrong” or causing more harm than good because of my ineptitude, and it is just huge to know that we have crossed this intense milestone. It has brought peace and encouragement to keep working at it and stay the course.

It is hard to wait yet another six week to two month rotation as they study the tests over time for her before they can begin treatment. She has been so sick for so long with no relief, and having to wait even longer…you feel so helpless. Her illness, too, is hidden and invisible, in its way. She overall looks better when you catch her on a good day; at the height of her cycle she looks as drawn and pale as she did at the height of her mono. I notice it every time I do the children’s seasonal clothing switch. For the last three or four times, I do no size changes for her- just exchange long sleeves for short sleeves and the like. She is still in the same clothes as she was wearing when she got sick two years ago. It is noticeable too when you see her around other five and six year olds. She is often a full head shorter and noticeably smaller. In our parish, she blends in with the three and four year olds, not the her own age group. Her illness is so intense and yet so spread out that you can almost think she’s okay until these things stare you in the face. Her blood tests certainly show the difficult truth too. Everyone freely admits that she is one sick little girl, but none of us can seem to grasp the root cause of it all.

It is hard, living in the mystery. I often second guess myself- should I let her do this or that? Will this make it worse? Generally, I trust her and her own intuition. If she feels up to running and monkeying about, I let her. I often make space for her to rest quietly when I can tell her mind and her body aren’t agreeing with one another and the shadows grow long under her eyes. Together we have learned a dance that seems to be working. I can imagine how difficult it must be for her sometimes, watching all her siblings go and go and wanting to be with them, while her body is saying no, not today. I dearly hope that we will find the root cause of all this, be able to treat it, and she return to health. Meanwhile, we wait, and we dance in the rain.

I feel like I write from the transitional space here far more often than I would like. I am coming to understand, however, that most of the journey is transition, a letting go. As parents we simultaneously train and raise our children while ever loosening the ties, so that when the time comes they fly to worlds we can’t even imagine, and so it is the same living in this hazy world of sickness and illness. I don’t know where either of them are headed any more than I know where my other four are, and all I can do, must do, is walk beside them and love them. It is enough.

(For the record, I deleted the last two posts with videos. They served their purpose at the time for those of you who wished to stay in the loop, but my introverted self can’t stand the thought of them hanging out on the blog any longer! *blush* So I am taking executive action as the creator of this here space and consigning them to the waste basket.)

Suspended…

winterspring

On a warm evening last week, a neighbor a few doors down was practicing on his drums. Whomever it was clearly had some skill- here it was jazzy, here it was crisp and martial, on it went from one style to another. Towards the end, the drums had fallen silent for a few minutes. I assumed my impromptu concert had come to an end. Just as I had given it up for gone, he began again. This time, as he played, each measure stretched out longer than the one before it. I was surprised at how simple percussion could portray sadness, and then longing. By the time he reached the very end, the tension was palpable. It was then that he did a beautiful long swirl on the cymbal, a shushed sound that felt like a flower falling from a tree or a woman twirling in her skirts. Like whispered beauty. On my ear it felt a poem.

I thought of his percussion poem as I walked the trail this weekend. The weather had snapped un-naturally cold in the middle of spring. The forest all around me looked other-worldly. Suspended animation. Green budding trees stood next to still golden, nearly ghost-like fall foliage. It felt Narnian. It felt as if Mr. Beaver was whispering covertly Aslan is on the move in my ears. The tension between the seasons was so palpable that if felt fragile, breakable. Will winter win and the buds freeze, no flowers? Or will Spring have her say and emerge beautifully triumphant? The beats stretched out, and out, and out…

Suffering so often feels like an unending winter. Barren and stripped. Desolate. Like living on a wind-swept cliff’s edge. No margin. Every choice hemmed in. Step wrong and you might fall off the end of the world. I know this in my bones, I feel the pressure of it weighing down hard. The hard crash against the drum with each new sorrow and confusion. And yet, and yet.

I know Aslan’s name. My friend wrote to me the other day”…I know the Lord to be as Lewis wrote of Aslan… ‘good but not tame’…and I believe that Christ came here in part to be with us in suffering…not ignoring, or trying to ‘explain it away’…Christ is our Light in darkness.” The way is dark, but not without hope.

I, like everyone else, want to push forward to the punch line, the sweet hallelujah, the gentle swish on the cymbal. The bursting forth of flowers, everywhere, jubilant spring. It’s hard to write about a place that has no easy answers. I want to be anywhere but here. But it is in this suspended place that I am called to be, and I must dwell here, lean into the long tension between the beats.

Liminal space…

springhope

I have the distinct remembrance of a scene in a movie or two, where someone is scribbling frantically along a chalkboard, spools of numbers and symbols in their wake, feeling along the board with their other hand, so close to the problem at hand that it’s not until the camera pans back that you can see this huge length of board stretching out behind them, full of mysterious answers.

That’s how my mind feels at the moment.

I’m scribbling in the dark.

We were dealt one blow after another at the beginning of this week. It’s not that any particular part of it was horrifyingly bad. Everyone is okay. Maybe it was the rapid succession of bad news. Maybe it’s just because it was one more thing. But this time…James and I both drowned underneath the weight of it all.

It has been a most difficult week.

I remember laying sprawled in the backyard late on Wednesday, looking up at the stars and constellations through the feathery reaches of the trees, the moon framed in a tangle of branch. All I could think of was the intricate design of the heavens, how the language and the design of the stars is so precise that the Philae comet lander was only off by some twenty two seconds after traveling for nearly ten years to reach its destination. Symbols and equations sprawled across a chalkboard…

I found comfort in the endless stars, not one of them random. The moon pulls the seas, the winds obey. The water falls on the earth.

He is faithful, He is faithful, He is faithful.

Star dust runs through our veins.

Ever so slowly I’ve found my breath returning, the inexorable weight easing.

This liminal space is so very hard.

I watch the return of Commander Scott Kelley’s return from the International Space Station after a year suspended between earth and moon, and somehow, I feel a kinship. Teach me how to space walk, I want to beg. Teach me how to live in the tension of change. Held and yet un-moored. Spinning at 17,000 miles an hour above an earth that heaves. Teach me how you lived through that. 

Realize where we are…

closingin

The walls, they close in on us and the way seems really dark right now- so much sorrow. We busted out of here, took the afternoon off, searching out to see things from a different angle.

getlost

Not till we are lost, in other words not till we have lost the world, do we begin to find ourselves, and realize where we are and the infinite extent of our relations.

-Henry David Thoreau, Walden

horizons

Widen your horizons…

held

Note the heavens. See how you are held, and rocked. So very loved.

Book Friday…

fridaybookpile (1)

Art Friday has been a long standing tradition ’round these parts. Alas, alack, with all this medical fun, very little works in progress can be shared because, well, I have to start them first. Ahem. Very soon, I hope! But there is a second best thing. My friend Katherine and I started the #fridaybookpile on Instagram a few weeks ago and we’d love to have you join us. We don’t care where you share it, so long as you share it! Make sure you tag us! I’ll have a button for you to use on your blogs next week, if you’re interested. We share what we’ve been reading as a family each week, our school books and read alouds, our own personal reads. It’s a lot of fun to see what everyone is interested in at the moment. Hope you’ll join us on Fridays! What else could be better than my second and third favorite things, if you can’t have art?

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