Family vacation: Day 1

 First step was to bring Mira to her buddies at Crescent Cove. They do a *really* good job there of knowing the kids who stay and of caring for them while they're there.

Kisses goodbye, and she's off.

Next step: load the van! (AND the trailer!) We don't usually use all of the seats in Big Blue because it's pretty tight, but when we need to, we can do 3 (the wide one which used to be the old back row), 3 (the narrower one) and 4 instead of the normal setup where we have the narrow 3, then the 2, and then the four. With this set up, and Mira not with us, and Owen coming up a day later, we had room for the girls' friend, Hope. Here we go!

Our first step was at our dear friends, the Martins (if you've read this blog long enough, you'll remember Chad as the guy who came and helped Matt with all sorts of things on the addition!  (He's mentioned in this post and here are some of his kids at the bottom of this post! Oh - and one with a photo!) They moved away a little over two years ago and WE MISS THEM!!) This was our first chance to visit at their house and see their farm-in-progress, and they made room for us to spend the night.

All of the girls (except Bobbi) in one room!

Got a kick out of this - this is our old bathtub that we removed from our old bathroom before putting on the accessible bathroom! They're using it in an outdoor shower area he's creating.

A few couch cushions, and the trailer behind the four-wheeler worked to bring Bobbi (and the rest of us) on a tour of their property!

It was hard to leave the next day. These people are so special to us, and their home was such a welcoming oasis permeated by the love of Jesus. I hope we can make it up there again!

Our whole crew...and Hope. I just realized that we're almost all color coordinated! Pinks and teals and royal blue? You'd think we planned it!

This one just makes me smile. :)

And then we were off for Duluth, aiming to arrive there at noon...but that's another post.

more about the Bobbette

 Four and a half years ago we took our little family on a trip up north to the North Shore of Lake Superior.

In the background is Split Rock lighthouse. In the foreground is our means for hiking with a non-mobile child.

Perched on a rock

At Gooseberry Falls (which is wheelchair accessible until you get right down by the falls themselves)

...at which point Dad can carry down the rest of the way.

Another method for carrying someone who is not yet mobile!

All of us outside of the hotel we stayed at, which is made from converted railcars!

 

We've been talking seriously for the last year about doing it again, but this time around, it's a little more complex. First of all, Krassi is bigger than he was four and a half years ago, and though we still do the "sack of potatoes" carry with him a lot, it's a little tougher now than it was...and Bobbi doesn't work as well that way! Tsvetomira can stay with Crescent Cove, but we wanted some way to have both Bobbi and Krassi be able to be involved with the active parts of our days if we made the effort to take a family trip!

So, we researched, and found this, which is pretty much amazing in pretty much every way: the Joelette.

But the price tag was a little (significantly!) steep for us, particularly because although we have three kids who could potentially use it (Bobbi, Krassi, and likely Reuben some day, too), it's not like we go hiking every weekend!! So, we thought, can we rent it from someone? Nope - closest we could find is in Colorado, and just wasn't feasible.

So, we researched some more and found this, which is not as amazing: (link here). But it has a much more accessible price tag. But would it be worth it for the cost? No foot rest, and, more significantly, would really require ALL carrying, and not have the benefit of the wheel to roll along and support weight during easier/smoother stretches of the hike.

Months passed, and then we remembered that we knew someone (distantly) who makes custom bicycles!!! So we thought, why not? We sent him an email asking if he thought he could rig something up with the more important features of the really nice vehicle with a price tag more reminiscent of the not so nice vehicle, and he said...yes!!!

His family passed through the Cities on their way to Wisconsin last week and left the in-process "Bobbette" as they've named it, with us to try out so he can make any last adjustments before powder coating it (in Bobbi's color of choice - espresso - like her beloved coffee!!)

It works SO WELL. It's so well balanced that when you're just running it along on the ground, both the front and the back person feel like the other must be doing all of the work because it's so easy to work with. He's got a great cushion incorporated in as well as a nice secure harness. The footrest needs a bit of adjustment, but otherwise, we can't really think of anything that needs to change! It's so perfect! (And he managed to figure out a way to get it to fold down small, which was a feature we said we didn't need to have, but because it DOES fold, we can take it in the back of Big Blue without needing to hook up the trailer or take Owen's pick up truck!)

It's so easy to use that even Rinnah is sufficient to be the front "sherpa" when we're going on fairly straightforward terrain.

Here we are this past weekend down by the Mississippi River at a hiking spot (Pike Island) we've enjoyed in the past...but not ever with Bobbi! We paused a bit to throw rocks, so Matt's just holding it on his own. There's an option to flip the wheel back so it can sit stable on four legs when we're stopping for any length of time, but it wasn't worth doing for this short pause.

Set up and take down is pretty quick.

We managed to do a lift over some driftwood at the shore, and even to go up a rough cut flight of stairs. There are two mini-handles on either side of the chair, too, so if we needed to we could easily have four (or up to six, if each person took one handle) people to lift and move if/when the terrain requires.

North Shore, here we come! We have reservations at the same hotel for the first week of June, and we're really looking forward to an adventure. We're bringing Rose and her husband along, as well as our adult niece (and her two-year-old) to stay with Grandma who can't really be left alone anymore, and the girls' best friend, Hope, who we consider to be our seventh daughter. And probably our nephew (Owen and Krassi's age), because even though he's not really into hiking, he and Owen will enjoy the time together, and we've got the rest of the family anyway! (The two of them are our kids' only cousins on Matt's side.)

Go ahead and check out Randy's web page (click on his logo below for the link) - he's the one creating and fashioning the Bobbette for us!

A brief update

• We got the report back regarding Bobbi's birth family. They were only able to speak with her grandparents, learning that her mother and older half-brother have moved with his wife and two young daughters to another EU country (which we know). Her grandparents were not really interested in talking much, but even with that, we were able to get a whole handful of little tidbits, that while in and of themselves are not much, were able to answer some of our questions and Bobbi's curiosities. And, of course, to open up a whole bunch of others. There's still hope that her grandparents will choose to pass the information on to her mother or brother and this may not be the end of the story. We shall see.
• Mira is doing really amazingly well. We are keeping ourselves completely isolated, knowing how easily she can get really really sick, and figuring even if we could make it through the COVID-19 virus, she probably couldn't, and since truly the one "goal" or dream that we had for her when we decided to bring her home was that she would not die alone - that when her time comes, she will die with her family that loves her surrounding her and touching her - this is not the way we would choose for her to go! Her nurse still comes in three days a week. She has stopped working for her other family because the mother in that family works in health care, so more exposure than Mira's nurse was willing to risk (and, I think she made the decision, too, knowing that Mira's need for professional care was greater than that of her other client). Rose comes into our house five days a week as well, but she's only coming here, or grocery shopping, even before Minnesota's stay-at-home order went into effect. 
• We have dear friends from church who are doing all of our grocery shopping for us so I don't even have to leave the house. They even brought and amazing full meal for us last Tuesday, which was Leah's birthday, to help her celebrate.
  
  
  

  

  Now my second-born is the fifth teenager in the house!

  

  And there's the fat hands of the youngest, helping himself.

• We DID have to go out for an orthodontic "emergency" for Leah. I talked with her orthodontist on the phone, and he agreed that what we were dealing with fell just over the line into "emergency," so was willing to treat. Her last appointment came two days after they were ordered to stop seeing patients, and her wires on the bottom were protruding far enough that they were irritating her gums. They agreed to just have us give them a call when we got there and come out into the parking lot with their wire clippers so we didn't have to go into the building. Owen, our new driver, drove us over there, with Evania, Reuben, and Eben along for the ride just for something different to do! We didn't even have to call when we got there because they saw Big Blue drive up and knew it was us!
• Bobbi, Krassi, and Reuben are doing physical therapy, occupational therapy and speech therapy (each some combination thereof) over the internet starting this week, and it's gone really well. Krassi was showing off some of his skills this afternoon. See him sitting up so tall!
  
  And that's it for now. Just a bit to let you know we're still alive over here!

Busy week

1) Tsvetomira had a birthday! As of Monday, she's 14 years old. We ate ice cream with sprinkles in her honor, and sang (with one of us touching her so she could at least feel what we were singing!)

2) Matt finished the shelf that separates the opening between the living room and his office! Along with that, he was able to put in the last piece of floor trim in the living room, so the living room is finally completely done. Now all he has to do for the west addition that we began over six years ago to be finished is to do a bit of sheetrock mudding, sanding and painting on the doorway into his office. Not bad.

3) Tsvetomira qualifies for nursing-level care, and has officially been approved for up to 38 hours a week as of July, but we haven't been able to find someone, until this week! On her birthday, we had a nurse start her training. She'll come three mornings a week for about four hours just to help with Mira's morning cares in the hopes that a) Matt can get to his desk sooner and b) we can keep closer tabs on how she's doing overall and hopefully catch her declines sooner. It's a great arrangement. Her son goes to school a mile and a half from our house, so she drops him off and comes here. When school's off, she can stay home with her son as those days are generally more flexible for us anyway.

4) Bobbi, for the first time, was told by a person she had just met that they couldn't tell at all that she had an accent! It's definitely still there, though diminishing continually, but it was kind of cool for someone to be that surprised that she was born in a different country and didn't start learning English until she was 16 years old!

5) Daddy and Mira, after a six month hiatus, have made their trip together down to the ER at Regions to check out her lungs. She's such a tough call to make. Over the afternoon she just went downhill, so after pie at church tonight, they headed down. Of course, he reported that they got there and she was satting at 96% on room air, instead of the 90% or lower that we'd been seeing while she was on oxygen here at home. But they said her lungs sounded "wet" which they didn't yesterday when our nurse was here, and they'll be doing x-rays. Very probable that she'll be admitted to Gillette. But still, six months in between is a definite record for her!

6) Our friendship with Gillette began nine years and one day ago today. It was two days before Thanksgiving, 2010, when Reuben went into Gillette as a "normal" kid and on his second day had his first two really big seizures, and BOOM, just like that we had a diagnosis of epilepsy the day before Thanksgiving.

"Before" we knew anything

"After." Still just our sweet little baby boy.

It was exactly nine years ago today that I woke in the night needing to use the bathroom (ten weeks pregnant with Rinnah), and walked to the hallway bathroom instead of risking using the in-room one and waking Reuben. It was standing outside that bathroom door that I had the revelation: I'm not afraid to adopt a child with special needs because I am already the mother of a child with special needs. I just didn't know it until today. It almost made me want to ask Matt if he wanted me to run Mira down tonight instead of him, just to walk down that same hallway on this anniversary. Never did I dream what God had in store for us, and it's humbling to look back and remember those little steps he was already taking to prepare us for this and whatever still lies ahead.

6b) Ebenezer is, within a week, the same age that Reuben was when we got Reuben's initial diagnosis. It's been an interesting anniversary this time around as we have another 16.5 month old little male human around the house - but a very different one from Reuben.

 

 

We call Eben our Duplo Man because he loves to build and disassemble these towers! He's really picky about the blocks he uses - they have to all be the same size - none of the double tall or double wide make it into HIS towers!!

7) And tomorrow is Thanksgiving! Our church had its annual Pie and Thanksgiving night tonight, and the theme this year was Ebenezer, as in a time of remembering how God has helped us up to this day as a way of encouraging each other to trust in his continued care into the future. Fitting, I'd say!

?) I didn't mention it, but we've been without Big Blue for three weeks!!! After an original estimate of $12,000 to repair it, we found another smaller shop that could do it for less, but it would take longer as they didn't carry the parts on hand, so would have to order them piecemeal as they needed them. For a few thousand dollars in savings, we went for it. It's SO nice to have our vehicle space back as of yesterday! We were grateful that Owen has bought himself an old pick up truck that seats five, so we could at least still get to church on Sundays while down our big vehicle!

The circus goes to the Circus [now with a few more photos]

And a good time was had by all (Mom, Dad, ten kids, and Rose). More or less. :D This was my first time, but Bobbi, believe it or not, had been to a circus in Bulgaria in her childhood, so she was not a rookie. ;) Still, she fully enjoyed the outing. There are not a lot of things that we can do all together as a family - this one worked great. Even Mira, who's had a rougher transition to being back home than she usually does after a hospital stay, made it through the whole morning calmly and peacefully.

We're really all there - you can't see Evania (between Rinnah and Rose), and Tsvetomira is visible only by her hair next to Matt at the far end, but there we all are!! Bobbi and I are "twins."

WOW! Elephants.

We didn't pay for any of the extras, like face paint, but "Mom-face-paint" (aka lipstick) is free. ;)

Bobbi got one, too.

Some pretty crazy stuff! Having never been to the circus before, it was funny to me how surprised I was to see "real" circus stuff.

Here's Eben's way to enjoy the circus.

Introducing Baby Blue

After Little Blue (our Jetta) decided to run away from home (detailed here), we've been slightly more actively pursuing a new (to us) vehicle of some sort. We've for a long while talked about someday replacing Little Blue with a minivan - you know, a small vehicle for when we have just a few kids with us, but big enough that we can bring a wheelchair. We're particularly thinking about the frequent trips that we need to take to medical appointments with Mira - we can disassemble Bobbi's chair and get it into the Jetta, and with a little more difficulty, can also get Krassi's in there, but we just can't do it with Mira's behemoth. A minivan with stow-n-go seats seemed like the best way to go.

With Andrea's mom in town to watch the kids (in time for Thanksgiving, but primarily here to help us next week when Bobbi goes back in to stay at Gillette for one to two weeks of intense physical rehab), Matt and I took Saturday afternoon to scoot out together (!) with Eben to check out a few used vehicles we'd seen on the internet.

Turns out the winner when we put together the combination of miles and price, was a fully loaded, pale blue colored 2013 model. We made the purchase and drove it home yesterday. The funny thing about purchasing used vehicles is that a family like ours can end up with a vehicle with all the trimmings...including a heated steering wheel! (I don't think I even knew things like that existed!!)

But the best part of all is the name - Matt himself christened this one: Baby Blue. Very fitting. Big Blue and Baby Blue - what ends up happening to Little Blue is still up in the air, but we've got some ideas rolling around. (Ha ha!! We're just glad Little Blue hasn't been doing any more rolling around without prior authorization!)

What we know

First, an update on Bobbi. That one's easier.

We've made it since right before midnight last night without any of the heavy pain meds for Bobbi, managing it all today with regular doses of regular old Tylenol. Nice. She's had a few periods of discomfort, but nothing she couldn't work through. Today, too, she and Dad (and our friend Faith, who helped us out when she and Mira first arrived home from Bulgaria) went back to Gillette to have "windows" cut in the heel of her casts to relieve some of the pain she'd been having at that location.

They also stopped in to visit Mira.

Matt has not been able to spend nearly the time with Mira that he would like to be able to this time around. It is an odd sort of relief to know that she, being blind and deaf, and so impaired cognitively, is not particularly bonded with any of us, so she isn't particularly aware, so far as we know, that we are not by her side at all times. She's had enough stays there, that there isn't a shift where she isn't being attended by doctors who know her well, and at least one nurse who knows her, too. She is in good hands even when we can't be there with her.

We got a call tonight from her doctor (she's still in the PICU - they'd been thinking yesterday that it would be a short stay to stabilize her low body temp before transferring her to the regular floor, but it's turned out to be over 24 hours so far, with no sign of anything changing yet). He reported that her heart rate is in the 140s, and her body temp is up above 104. He was asking what we do to help calm her when she gets like that, and our response is that she doesn't get like that when she's home. The things we do when she's uncomfortable, like giving her an extra session in her Vest, or Daddy massaging that spot in the palm of her hands, aren't enough to counter this. She's also on a fairly high level of oxygen, and still only maintaining saturations in the low 90s. She's having a rough night, poor girl.

In the meantime, I'm here at home trying to keep up on various paperwork, Matt's trying to hit a work deadline for Friday for three different jobs, and Bobbi's taking her first venture out of her room. She's sitting up with Owen and Leah watching her overdubbed cartoons in her loaner wheelchair.

While we've slept *some* over the last three nights (unlike the two before that), they have not been full, restful nights. We could all use some good sleep. I'm really hoping that with her pain in a better place, AND being off the narcotics, that tonight's sleep has the potential to be more truly restful. Matt and I are camping out on cushions spread all over the floor of her room so we're there to adjust position, etc, as she needs it during the night. That means neither of us is in with Reuben, so we're kind of coasting on the fact that his bad seizure nights come with a few good nights in between. Tonight might end up being his bad night, however.

Rather than go into detail about how we've been surviving (not much more than that, but definitely still surviving, thanks in part to many generous friends giving of their time in various ways), I want to do two things: first, I want to send you back to the post I wrote about talking with Bobbi about her upcoming surgery. That, combined with what God's been showing me about being grateful in everything makes all of these things possible to navigate mentally. I have no idea why all of this is pouring in at one time - I have been only sharing the very tip of the iceberg of the various challenges that our family has been facing over the last two months or so. There are many heavy cords interwoven with fine threads ranging from our 19 year old cat dying to the birth of a baby (joyful, but sure adds another level of complexity in those early days when Mom's completely tied up) to a planned surgery to an unplanned PICU stay that it's awe-inspiring to have the image in my head of God pulling all of this together for a purpose to break what needs to be broken in me and to strengthen what needs to be strengthened in me (and not just me, but every single person who these different events touch).

With that, here's thing number two: I have a story for you, which fills in some of the details I was missing here.

So, Saturday night, about 7pm, Bobbi was discharged from the hospital and got to come home. That began a truly miserable night, culminating in a 4:30am 911 call when we'd exhausted our options for pain management, and her anxiety over the pain (not helped by the narcotics) causing the pain to escalate even further. Poor girl. Matt followed the ambulance down to the hospital in our little Jetta (easier to park!) and spent a few hours there not sleeping while they got things calmed down a bit, and swapped out one of her meds to give her something more effective at relaxing her muscles. Then they wanted to send her back home. (Yikes!!) So Matt had to drive back - so nice that we're so close! - and swap out for Big Blue because she doesn't fit in the Jetta with her casts. Honestly, we'd been thinking with the state she was in that she would be readmitted and he would not be bringing her back home that same morning, which is why he took the Jetta in the first place. He parked the Jetta way up on the driveway next to our trailer to give plenty of room to navigate Big Blue on the return trip, came in, got some breakfast, gathered a few things, and about 45 minutes later was back out the door to bring her back home.

I realized that we were going to need some extra hands during the day, because caring for her was a full-time-and-then-some job for both me and Matt during the night. We were both terribly fatigued, and knew we had a day full ahead of us. I made two unsuccessful phone calls while staring out the front window. Then I saw the Jetta heading down the driveway, and I mindlessly wondered where Matt was going...and then remembered...Matt had already gone!...the Jetta was leaving the premises of its own accord!!!! Phone in hand, I dialed 911 for the second time that morning (is that what you're supposed to do for runaway cars? I don't know.) Somehow, the car made it down our curving driveway, over the low garden wall at the bottom, across the street, through the ditch, across the west-bound highway lane, into the central ditch where it settled down and there it sat.

You have to zoom in, but it's there if you look.

Um. This is not good. The woman I spoke with from the highway patrol was delightfully kind, and said not to worry at all since it was out of both drive lanes. I called our neighbor and she took on the task of getting it towed out of the ditch. Then I emailed our pastor. "We need help..." And help came in the form of Faith and her mom (who is in our small group bible study).

It's kind of a scary thing to realize that you are so sleep deprived that you are (apparently) missing really important things like making sure your car is properly secured before leaving it, but the story became even more curious when we learned from the man who towed it out for us that it was in gear and the parking brake was engaged when he checked it out before towing it out. It started for him, too, amazingly, as he turned it a bit to get a better angle for the tow.

What in the world???

I'm only being slightly facetious when I say that the only option I can think of is that it was the hand of God that pushed that car down the driveway.

Because, apparently, we needed just exactly that much more stress layered onto that Sunday. I remember thinking at the moment as I was thanking God that my car was running away down the driveway that there must really be some truly marvelous shaping and forming that is going on. The precision with which my Surgeon is breaking and cutting and re-shaping is incredible.

I went out the next day to survey the damage done to my garden. I really, really enjoy my gardens (even to the point that I keep a crazy little blog that only I have the address for where I post photos of what's blooming, show me and the kids working in it, tell stories about plants that have come with special memories of friends and family, and talk about the progress, or lack thereof, of Matt's and my vision for the yard. It's fun having almost an acre to play with, and all of the raw material from his grandma's amazing perennial gardens). The garden at the bottom of the driveway is a newer one, and the limestone wall along our edge of it is still being constructed at the top edge. Just not this summer. Nothing at all happened in the gardens this summer, and only a little bit last year. When my parents' friend Carrie spent a week with us in June, one thing that really mattered to have her help with was mulching that garden around a few new plants our neighbor split off and shared with me so that I had one. nice. tidy. place that gives the impression that the home and yard is being cared for. It looked really nice all summer. To have that one bit of garden-sanity that we have this year get run over by my own car was not missed by me.

And yet, beautifully, when I went out the next day to inspect the damage as I checked the mail, (Oops. Columbus Day. No mail.) this is what I saw:

Since it's hard to see, here's a photo-shopped version to help you see the track that the tire made as it went through the garden.

It crushed one begonia (an annual - not a big deal in October), but ran right in between the others and my wild geraniums. It missed the daylilies, and one sedum was hit, but only lost a few branches. It will come back just fine in the spring.

The only real loss out of the whole thing was my favorite piece of limestone that I had placed carefully to work as a seat while we wait for buses at the bottom of the driveway.

Now that's the precision work of an extremely talented surgeon, if you ask me.

For some reason, the whole thing with the car has served to be a hugely tangible reminder that not a single thing that happens during this extremely strenuous time is happening by accident. It is all designed just as precisely as the way that car ran through my one decent looking garden.

Thank you to all of you who continue to cover our family in prayer through the weeks ahead.

~~~

Matt just got off the phone with the nurse in the PICU. I'll have him type a brief update after he gets back downstairs from where he's helping Reuben through his second big seizure of the night.

~~~

Mira is, as of last report, calming slightly, but is having a very tough evening/night. Her heart rate was in the 170's at times and her respiratory rate in the one-teens. That explains the high temperature...that is working extremely hard. After two doses of valium, a dose of ativan and another higher level sedative that I am not remembering currently, her heart rate is down into the one-teens. She is running between 50 and 60% oxygen (room air is 21%) and even with that, at some of the worst times her oxygen saturation was in the mid 80's. The nurse said her lungs still sound like they are moving air, but something is making it hard for her to get oxygen into her blood and is causing her to be very worked up.

~~~

Next thread...Andrea will be leaving shortly to take Reuben down to the ER. We will have to explain more on that one later.

And she's home!

Today turned out to be a much better day than the previous ones, despite only really getting one solid hour of sleep last night. She's managing all of her pain with oral meds, so the IVs were able to come out. The knee-moving machine that was so VERY uncomfortable the first time yesterday, is something that today she says puts her to sleep. That's a good thing. She has to be on the machine for 30 minutes per leg three times a day, so three hours of her day is going to be spent with it!!

All of the necessary body systems that need to be moving are moving, so late this afternoon we got the okay to bring her home. The amazing Rose (the boys' in-home care giver) had already told us she was around this weekend for a short notice shift, and true to her word showed up with about an hour's notice to help cover the kids so Matt and I could both be at the hospital for discharge. Here's Dad and one of her favorite nurses (though now that she's not in so much pain that she wishes she was dead, she likes ALL of them) getting her moved into her loaner wheelchair.

 We got her into Big Blue without any real issues (having removed one of the bench seats so she can sit with her legs out in front of her), and made it through the ride home without any break-through pain.

We've been home for three and a half hours so far, and it's been pretty much continuous care-giving! We're fully expecting that we'll get better at this quickly as the days go by, and that as her pain improves, many things will become easier.

[I'm reading back over some of this, and noticing that I've been writing nonsense, though all in a grammatically correct fashion. I've edited those sentences, but am thinking I'd better quit while I'm ahead and leave it at this!]

So, she's home. We're tired. Her mood is by far the best we've seen all week since the morning of surgery, and we'll see what the night brings! We don't plan to be sleeping too much tonight, either.

Owen and Leah coming in to say welcome home and goodnight!!

"You're a saint."

It isn't the first time that it's happened, but this time it happened after leaving the YMCA where Bobbi has therapy in the pool once a week. She and Evania (we got an hour of reading books together while we watched Bobbi) and I were walking out when the grandpa-type walking out to the car next to Big Blue commented on my [quite large] belly and making the classic "haven't you figured out yet how that happens???" joke after that. (Particularly after finding out this was going to be our 10th child!)

My comeback was simply that there are multiple ways of having "that" (which I loosely interpreted to mean, "adding children to a family") happen, and we've only had seven through birth and three through adoption.

And that's when I was given the above title: "You're a saint."

That one bothers me every time. On the one hand, yes, it's true, based purely on my status in Christ as a believer, and thus one who has been "made perfect forever*" but according to that definition, I am also one who is still "being made holy.*" And the implication in that comment is that there is something about what I have done that makes me somehow set on a higher level than the others around me. And oh, how that grates, because it is not what I have done that is what matters. (*from Hebrews 10:14) It is rather, what Jesus Christ has done.

My bathroom reading currently is an abridged version of an old book by J.C. Ryle. Here's a portion of what I read a few days after the above encounter:

"Let us never measure our religion by that of others, and think we are doing enough if we have gone beyond our neighbors. That is another snare of the devil. Let us mind our own business. 'What is that to thee?' said our Master on a certain occasion: 'Follow thou me' (John 21:22). Let us follow on, aiming at nothing short of perfection. Let us follow on, making Christ's life and character our only pattern and example. Let us follow on, remembering daily that at our best we are miserable sinners. Let us follow on, and never forget that it signifies nothing whether we are better than others or not. At our very best we are far worse than we ought to be. There will always be room for improvement in us. We shall be debtors to Christ's mercy and grace to the very last. Then let us leave off looking at others and comparing ourselves with others. We shall find enough to do if we look at our own hearts." ~ J.C. Ryle, "Holiness", from chapter 6: Growth

So, what then? The following are passages that continually resonate with me, and in many ways are the continuous undertone that propels me forward and continues to redirect me when my focus starts to drift off course.

Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God. Consider him who endured from sinners such hostility against himself, so that you may not grow weary or fainthearted. In your struggle against sin you have not yet resisted to the point of shedding your blood. ~ Hebrews 12:1-4

If then you have been raised with Christ, seek the things that are above, where Christ is, seated at the right hand of God. Set your minds on things that are above, not on things that are on earth. For you have died, and your life is hidden with Christ in God. When Christ who is your life appears, then you also will appear with him in glory. ~ Colossians 3:1-3

 Not that I have already obtained this or am already perfect, but I press on to make it my own, because Christ Jesus has made me his own. Brothers, I do not consider that I have made it my own. But one thing I do: forgetting what lies behind and straining forward to what lies ahead, I press on toward the goal for the prize of the upward call of God in Christ Jesus. ~ Philippians 3:12-14

~~~

There's a lot of music around our house. Bobbi's room is a nearly constant stream of music when she's home, and then there's the computer in the school room which is located centrally right off the dining room, and the kids (Owen, Leah, Rinnah, even Evania) have their own playlists that are constantly running. Daddy's office computer either has his music on while he's working, or is used as the stereo system for the living room when he's not. Ever since Matt and the older kids attended a family music festival featuring For King and Country as the final show, we've been hearing a LOT of their music from the central computer, regardless of whose playlist is on!

One of their songs in particular has been resonating with me lately. It's called Fix My Eyes. After beginning the song singing about what they would tell their younger self if given the chance to go back and live life over again, the answer comes in the chorus:

I'd love like I'm not scared

Yes, this is scary

Give when it's not fair

Some care-giving is not greeted with gratitude

Live life for another

She's not afraid to let me know that she needs her mommy-time!

Take time for a brother

Fight for the weak ones

Seizures. What can I say.

Speak out for freedom

Nine years in a crib

Find faith in the battle

Stand tall... 

The suggestion that I'm stupid ("don't you know how that happens?") is still hard to take...

...but above it all

Fix my eyes on you 

And in their own commentary about the song, they make a point about how it all hinges on that last line and a half - all of the stuff that a person may do is nothing in comparison to the need to live life with your eyes on Jesus. When the doing becomes the focus, it loses all of its value. When Jesus is the focus, the doing follows. Also from the song:

It takes a soldier who knows his orders 

to walk the walk I'm supposed to walk.

My walk is not your walk. My walk today is not my walk yesterday, nor tomorrow. I will tell my kids to look at me when I'm giving them directions. If I'm not living every day looking at Jesus, my "commanding officer," I'm not going to know what he wants me to do, where he wants me to go. 

I can wear the "saint" badge not because of the things I've done in my life, but rather (and let's bring in another song, this one from my childhood) because I belong to Him. And when the things that I do are coming from fixing my eyes on him and following him, and not from myself, then they matter.

I see no stain upon you
Because you are My child and you know me
To me you're only holy
Nothing that you've done remains
Only what you do in Me