Finding solid ground…

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Not a day after I wrote that “hooray, summer!” post, things turned topsy-turvy again, as they are want to do. Josiah’s home health nursing completely fell apart, which eventually resulted in an emergency room visit so the surgeon could re-assess and a new plan of action be put in place. I caught the cold James and the girls had, which didn’t help things at all. The same day of the emergency room visit, Ellianna had an appointment with a new specialist, where we discovered that her Peds had failed to communicate with the rest of her specialist team (and the error probably would not have been caught for a while longer had she not had a new specialist appointment). It was maddening. That Friday was the longest, hardest day I’ve experienced in the last few months. It “just weren’t pretty”, as my husband likes to say in the vernacular. I sent up a battle call to all of my prayer warriors, and then signed out of the online world, the need for quiet absolute. I only recently returned to the online space in the last few days, and I am finding more and more that I balance better with very little social media in my life and that regular breaks from it for days or weeks at a time is a very healthy thing to do.

Saturday brought a break and relaxation (including a much, much, much needed massage). By Sunday, the illness had fully taken hold. I spent most of the next few days curled in bed fighting it off and catching up on desperately needed sleep.

It pretty much took a full week to find solid ground. We continued in our plan to just relax and let the chores go well into last week, and then by Wednesday or Thursday, we began to straighten and clean. Somewhat as an aside, we found it easy to discern where the problem spots were after this stay-cation of sorts- because after two weeks of using the house but not really cleaning the house, the hot spots were pretty obvious. They were any place that I or the children had to ‘think’ too hard- where the place or solution wasn’t obvious or clear. We simplified those spots quite a bit, either by getting rid of things or more clearly identifying homes for things. It worked very well, and we all seem to be finding it much easier to keep up with the chores and needs this way. I hope to write a bit more about it in the coming weeks.

After what has seemed like an epoch, we were all able to make it to Church this weekend, healthy and whole. What a blessing the time was in Liturgy and fellowship with the parish, catching up with friends after this crazy roller-coaster ride we’ve been on. It truly feels as if the winds of healing are bringing our family into calmer waters.

Yesterday, my husband and I celebrated thirteen years together- and this year, that fact alone has felt like a tremendous gift given the storms we’ve had to endure. He is my anchor, my safe refuge.

Our new normal is definitely defined by the childrens’ chronic illness. The structure of our days now follows medication schedules, and that is a change that will probably feel familar to those who remember the newborn and early month stages of infanthood if you sub nursing times for medication times. Again, our two with chronic illness define when it is okay to be out and active and when it is better to stay home, just as young babies do. Our bedtime routine has changed to reflect Josiah’s needs. It is an adjustment to be sure, but because it feels so familiar to when they were younger, I feel like it’s not such a brutal, abrupt change as it might have been. I noted that I traded in a diaper bag a few months ago for what is now a basket of syringes, saline, and other things related to Josiah’s cecostemy tube. A ‘same but different’ sort of thing. All in all, it feels like a normal we can handle as we move forward. It just feels good to be together again. To see the kids, to spend time with them, to not be two ships passing in the night with my Beloved. I’m so grateful.

In summer…

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We are slowly finding our way back to center. With school done now, our schedule slows considerably. It couldn’t come at a better time. Josiah is healing well. He can sit up on his own now without pain, sleep in his own bed (versus a ‘nest’ on the couch that supports everything), and has begun to play without needing help to get up and down. He is still moving very slowly for a five year old but is still moving better than most adults, ha!

We traveled up to our state’s capital on Saturday to slip in to the state homeschooling convention for a few hours, which we haven’t been to in three years. I’m not sure what’s ahead for us on that front, but I will say that the convention always comes as a bit of a relief to us. We are often one of the smaller families (with six!)- we’re not the only fifteen passenger van in the parking lot- and there are tons of kids there my children’s ages. It makes my children feel normal instead of sticking out like a sore thumb. It’s hard not to feel like a traveling circus sometimes, and the convention allows us to disappear into the crowd as it were. It also meant a lot for my daughter to meet an adult family friend of ours who has dyslexia. She has felt very lonely, ‘weird’, and ‘stupid’ and meeting someone who is none of those things and has a great job helping others really opened her eyes.

We don’t have many plans for the rest of the month. It feels strange to say that we have only two more doctor’s appointments on the books in this next week, and then the calendar is clear for the known future. After nearly a solid year (Josiah’s and Ellianna’s testing, specialists, and the like all started the beginning of August last year) of weekly and sometimes daily doctor’s appointments, it will be such a relief to have open space in the calendar blocks. We all need some space to breathe.

The strangest part of this week has been the record-breaking, soaring temperatures! We’ve been over a hundred degrees (F) for five days- the warmest was 109. With anywhere from 70 to 100% humidity, it’s made going outside unbearable. It’s close to what we would call August weather around here, although even in August it rarely gets so hot- but it’s the middle of June! I feel sorry for all the brides who planned outdoor weddings this month. We’ve done our best to stay cool and hydrated. (Cute Ball jars help!) I’ll openly admit to wondering about our plans for the summer if this over 100 streak continues. My fair-skinned children are pretty sensitive to the heat as it is normally, so you can imagine my concern with these much higher temps! (My Ben, ever interested in the weather, tells me that we are 20 degrees off our average temperature for the area at this time of year.)

We are vacationing a bit this week: every one is lounging in pajamas, rooms are getting creatively messy, the laundry is being wholly ignored (which we can only do because everyone is staying in pjs), we’re eating off paper plates. The house is getting progressively ‘quieter’ each day this week- the sibling squabbles are lessening, the temper tantrums and tears are slowly ebbing. Perhaps it seems counter-intuitive to yank the schedule, but it seemed like to me this time around that the kids just really needed a chance to breathe and play and goof off without a lot of things imposed on that. We’ll have to start back on our chore schedule next week (or the house will get really yucky!) but for now, I’m calling it a great start to our summer break.

We’re home…

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The surgery went very well. He was in quite a bit of pain. On Tuesday morning he spent most of the morning holding my hand– he wouldn’t let me hold and rock him (sniff!) but he would hold my hand to help with the pain. Something about this surgery made me realize he just wasn’t a toddler anymore. He’ll turn six next month, and he’s every inch of it. No matter how much pain he was in, it was all “I can do it myself.”

We did our best to keep him distracted- I hope you enjoy our camera goofiness! We sure did, except for we got to laughing so hard it made his tummy hurt.

I’m not going to lie. The re-entry is always brutal. It always is, and if you’re not prepared for it, it can pretty much pull you under. This one was especially bad, coming as it did so quickly on the tail of my own surgery…everything just gets so off, no matter how hard our caregivers try to keep things normal. What I’ve learned is that the first few days at home, it’s more important that our family hears our song loud and clear, that they hear our harmony (And seriously, the bass notes are totally coffee and prayer!), than trying to set the house to rights or what have you. Trying to set things to rights is going to feel like sweeping snow in a blizzard. Helping everyone find their rhythym again is far more important. Lots of snuggling. Talking things through. Exploring together. I love how Josiah took an idea from watching Curious George and made his own shape lamp. Making favorite meals.

It’s going to be an interesting few weeks. Josiah will have a nurse come to our home three times a week for the next two; our van will go in for the repairs from the hit and run; Ellianna sees a new specialist. The children are done with school. I have a feeling it’ll be a bit chaotic for the next week or so and then we’ll find our groove.

A thousand natural shocks…

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The week heading into Josiah’s hospitalization has been intense.

It is definitely true for grief, but I am finding it is also true for those of us with chronic medical issues or have children with chronic medical issues- it just feels weird to realize that life continues on as normal even though your world has become a very prescribed, in-between space. Time loses meaning once you’re within the hospital; the hours are counted in four hour increments (vitals) and morning and evening rounds. So when you leave and say, stop at the grocery store on the way home, it feels strange- here’s all these people going about their lives as if nothing has changed, but yours is completely upended.

I’m starting to feel that way about life outside the hospital as well. It feels strange that constant specialist’s appointments and things associated with that feel almost normal that when a child has an actual normal thing like a scheduled eye exam, it feels really weird. I finally was able to take our van to be looked over by insurance, three weeks after the rear-end hit and run it was involved with. (It happened the day before my surgery.) Life was almost semi-normal in the week leading up. And then all of the sudden it wasn’t.

Ellianna has had a set back. I had been suspecting as much over the last month, but wasn’t able to get her into her pediatrician until this week. Her iron has dropped again. They also suspect that she has more deficiencies than just iron (anemia). They are also very certain that it’s not her diet or what she’s getting that’s the problem; it’s that her body isn’t absorbing the minerals. The next question is why. Ironically, the potential is very good that she may have to undergo very similar testing to what Josiah has gone through, albeit for entirely different reasons. It’s a pretty solid assumption that she’ll be receiving another transfusion in the next few weeks. Her test results should be back this morning, at which point we’ll know more about the other mineral deficiencies and what they want to do about them. Booooo. So that’s on the horizon.

And here we are (hopefully) on the home stretch for Josiah. He’s in surgery this morning to place his cecostomy tube. He’ll be in the hospital for another day or two, and then he should be able to go home, and hopefully that will be the fix his body needed and we won’t be in the hospital again (at least for him) for quite a while.

Even here we find a new normal. A dear friend sent Josiah a care package to open once his NG tube was in-it’s part of the first stage that Josiah must go through before the actual surgery, and it’s seriously not fun. It was so wonderful. It completely distracted him from the yucky, and it’s kept him entertained ever since. Daddy helped him build his Lego set, and the look of intense concentration on Josiah’s face was hard not to laugh at because it was so serious.

Meanwhile, this is the first time he’s been in the hospital that I have not had work obligations, tapping away on the laptop during his naps. I’ve closed down my freelance work for the known interval. It was just too much and had been too much for quite some time, but I tried to make it work with all the medical costs involved, hoping it would help.  It has felt strange that I am free to read and rest when he is resting; that I’ve been able to keep my own sense of normal in the midst of weird hospital time.

There’s no telling what the next few days will bring, for sure. I am trying not to think too hard about what Ellianna’s test results could reveal. I am framing it as a temporary road bump in my head- we’ll figure this out and she’ll be able to heal even more and get even better. Same for Josiah with this tube. We’re going to get to where we need to be, whatever it is that God has planned for us, when we get there.

All will be well and all manner of things shall be well.

- Julian of Norwich

Occupied territory (a repost from the archives)…

This is a re-post from the archives. I happened to be clicking through at random the other day. This was the final piece of a series of posts written regarding my struggles with clinical depression, PPD, and the loss of a child. Somewhat ironically, when passing through the other day I was a bit puzzled as to what had happened that had set me reeling so badly- it took me a second to remember which thing was what.

My husband and I entered marriage counseling a few years back, and one of the first things the counselor had us do was write out a time line of life events both good and bad. When we handed him the list he was rather shocked. He said that in his experience with counseling, just one or two of our experiences was sufficient enough to rock a marriage to the core. The list he was holding had 22 such events on it; in further discussion we remembered at least five or six more. We eventually left counseling without feeling resolved. For James and I, the struggle has never been between the two of us. It’s been with the events swirling around us. It’s hard to speak deep heart-truths when you are standing in the middle of a raging, roaring storm and can barely hear your own self think. We hoped that counseling would help us deal with the constant pressure, and neither of us felt like it did- it felt instead like the counselor wanted us to assign blame to one another, which neither of us felt was helpful in the slightest. Eventually we found our way back to one another, sans counseling. But when I read this post and the accompanying series (linked at the bottom), I am struck by how grief, sorrow, and healing move in their own courses, and the least helpful thing we can do for anybody is to rush them along.

The thing that struck me most about this post is how much I still feel this way, especially after this last go round with my health, and as we face continued uncertainty with Josiah’s condition.

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Greek Statue

Photo by digitalsorceress

It seems fitting I return here, to my quiet space, on the morning of my birthday.

I’ve long been wrestling here, trying to trace out months of a shadow box fight, trying to get out on page what has happened in heart, trying to find myself among the shadows and shafts of light.

I stopped nearly a month ago writing here. I hit an entirely new obstacle and found myself hushed and silent. I knew that I was not as I was then, that something soul-deep had changed within me, but I couldn’t understand how I got into that dark hole of soul-affliction in the first place. I was trying to trace out the lines here, feeling along the ridges and cracks to find the shape of things.

What I did know is that the months of January to May were a soul-shift of epic proportions. I felt the old sloughing away and the new emerging- a more heart-settled, more faithful, more focused me. But what troubled me deeply was the fact that I had long been in the land of depression- and the more I learn- acedia, and I didn’t know the shape of things so as to be vigilant in future. I thought writing and tracing would help, but I still felt fogged and lost on the moors.

I had learned that I had been living in occupied territory- that much is clear to me now. You can’t see the dark one in the midst of shadows, but looking back I can see where he weaseled under defenses, sowing doubt and sadness, confusion and shame, shifting sands of quasi-truth. My foundation was all shaky- my pride stood tall and my humility laid low, and I became trapped in a land where I did not belong.

It was a sweltering August afternoon that brought it all into focus. I was tracing the back roads from the small private country school my eldest son attends to our barn house, idly punching buttons of the radio. Spin of dial stopped on preacher speaking of Job. I usually don’t stop here- I dislike very much the hooting, hollering tones of the radio preachers, full of trite answers and scripture chunked down, bite-size and barely edible, so far from the Food it once was. But the honeyed tenor tones were speaking of Job, and the dial stopped. I listened.

I have found much company with Job of late- of all the Bible characters, he is the one I’d most like to sit down with for an ex-temporal cup of coffee, pick his brain, trace out words. He faced such staggering loss because of his faith, not in spite of it. So many of the ‘mighty men of God’ come to their glory after such grave sin and discord against the Lord- and His glory shines in His Grace upon them in their brokenness; Job, on the other hand, was so trusted by God that He says to Satan- ‘have you heard of my servant Job?’ as if to paint a giant target upon the back of his dearest servant walking the earth at the time.

What strange love. And what trust! How did Job get such a faith that God would trust him with the most heaviest of burdens and know that in the end, Job would be true, trusting, open to faith still? We so often focus upon the burdens and loss of Job, of his friends that beleaguer and mislead- but rare do we talk of Job’s faith. It was with this in mind that I stopped the dial and listened. It was all that which I had heard before. I looked idly out the windows at the rolling hills and red, red barns, watching cows and cattle amble along. A phrase reached out and grabbed me, and it was as if someone turned the sun up in volume, technicolor brightness flooding the humble country road- “Job’s great faith lies in the fact that he left himself open to pain and suffering, as they were, without bitterness or rancor”.

There the key lies, dear readers. I had been wrestling, ala Jacob, with my faith, with God- I will not let you go until you bless me! I will not let you go until you answer my questions! Why is this pain happening, why? Why? Why? God says of Job’s friends that it was their biggest failing that they tried to reason it out, that they tried to trace the mind of God, who is and was unknowable. Job trusted. It seems so simple, really. He trusted. Surely I can do that too…but Job’s trust is on a plane I may never reach in this lifetime.

It was on the windy back road that I finally came to the doorway to set out into undiscovered country, to leave occupied territory behind, to step out in wild blue abandon into the love of Christ- instead of holding back, hanging around door frame, clenching white knuckled to the wood.

My battle with the shadows had begun when I tried to shut of mind and heart to the pain. Yes, the sting lessened, but with each slam of door against suffering, the light grew dimmer, until I was shuttered in by darkness, barely soul-alive. I had a choice in my grief and lament- I could have turned to the Healer, heart-wide, and attended His instructions, as Job did- but instead I shut heart, mind, soul, slam-bang, away from grace.

And yet, even then, there was Grace, abundant. This amazes still. This wild, tremulous, unknowable, torrent of the love of God. All I had to do was jump in instead of treading around edge on tip-toe. Oh, some days I feel as if I am drowning still, but Job reminds me that it is worth drowning for. There is reward unknowable- the trust of God. What that must be like. Can I be trustworthy, as Job was? Can I trust God even in the pain?

Here I mark an ebenezer, in the dawning hours of my birth, of a jump, of a faith, of a knowing. God is in control. His ways are good. I will trust.

Won’t you join me in the wild blue? It’s beautiful out here.

Originally posted September 9, 2010.

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The rest of the series:


Buzz Bee Day

Luminous Fear

The Sparkling Flash of Morning

The Moon’s Lament

Mise en scene

The Breakdown Train

The Spirit Life

In and Around and Through

Cracked Mirrors

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