Bobbi's job

 Just over five years ago I posted about how Bobbi had gotten her first "real" job (as in, not just a temporary summer job.) As we had hoped, it was a great fit for her. Last month marked her five-year anniversary with Kwik Trip as a Food Product Demonstrator (FPD)! She has gotten to know many of the "regulars" and they will come in looking for her. She's seen co-workers come and go, some because they were just looking for temporary work, and some because they've been moved to other positions or other stores within the company. She takes pride in being someone who sticks it out even on the tough days (and she's had days she's told us she's ready to call it quits, and the *only* thing keeping her from following through is that she doesn't want to be the one who just leaves!) Besides, it's nice getting a regular paycheck. 😉

For over a year she's been working with another agency that works with people with disabilities in job placement, not because she wants to leave Kwik Trip, but because she's been hoping to work closer to 30 hours a week instead of just the 15-20 that she was currently getting. That's been slow going. She is very uncomfortable with anything having to do with numbers, so anything that involves cashiering is out. Yikes! That *greatly* reduces her options. She can't carry things, so stocking shelves isn't an option. Her cognitive limitations make something like answering phones and directing calls beyond her. So, although she's a very personable young woman, with a definitely range of skills, they just don't overlap in areas that are easily marketable. Greeting guests and passing out samples is a great fit for her.

So it was pretty hard hitting when she learned a few weeks ago that Kwik Trip is dropping, company-wide, their food product sampling program. They intend to keep all of the current product demonstrators on in other positions, but mainly in jobs that Bobbi can't do! We're so grateful that her store manager is motivated to keep someone with Bobbi's company loyalty in the company. So, while she's not going to keep 15-20 hours, she DOES still get to work three 3-hour shifts a week putting price stickers onto muffins and crisp rice bars and doing some light cleaning of the surfaces that she is able to reach.

Here's Bobbi wiping the counters by the coffee machines.

However, the week after she learned about her FPD position going away, she actually had an interview for a similar position with Sam's Club! Her FIRST interview after over a year long process of looking! 

And she bombed it. Oof. That was a pretty big downer to her. She also has not learned to see the hand of God at work in the coincidences of timing the same way Matt and I have had over the years., which made the blow even harder to take.

What a joy to, a few weeks later, see the same position open again; she applied, and got another interview! She related afterward that the (same) interviewer was surprised to see her trying again, and told her that she admired her persistence, and was going to give her one shift a week and see how it goes, with the potential of picking up another shift if it works out well for everyone!

So, before her FPD job at Kwik Trip ended and she was down to 9 hours a week, she had officially gotten a second job. While she has not started there yet, she has been hired! What beautiful provision for her. 

And, unrelatedly, she got her ears pierced a second time. 

By the beginning of July

Just like with the first addition, things slow down significantly once Matt's the primary work crew, because he still has his "real" work to do, and our running joke around here is that Matt works a 40 hour...month. :P He really does get more work than that done with his architectural/drafting work, but it's rare that he actually ever gets a classic 40 hour week between diapers, vest treatments for Mira, and the various appointments that he and I are running people to every week. But despite that, we're still getting out and getting little bits done on the garage.

Here's a photo I took from the flat roof where I am helping Matt line up the top edge of the vertical siding panels. He's taking a work call at this moment, I think!

Matt taught Rinnah how to paint the lap siding to get it ready for installation so she could continue this batch while he ran to get Bobbi from work.

And here he trundled her up the hill to show her how the installation of the lap siding is coming on the east side of the garage. I still love how the garage is sunk into the ground on this side, making this side wall really short from the yard side.

And then, exactly twelve years and one day after we lost our surprise baby during Krassimir's adoption, I started bleeding at 11 weeks and 3 days into this pregnancy. While we knew my "advanced maternal age" (ha! I was already considered a "geriatric" pregnancy twelve years ago!) made miscarriage much more likely, the fact that we'd made it past ten weeks meant I thought we were really going to get to keep this happy gift. But the God who is good when he gives and good when he takes away took this little one away from us, too. I'm so far behind in posting that I'm writing this in mid-September, and there's still such sadness there, but like I told a friend who asked, God has been so very present in my life over the last few months that the sadness just can't get into the depths of me because *He* is filling me up.

It's hard to see the detail, but I added another stone to the custom mother's necklace that I had made seven years ago. It has a birthstone for each of my babies, including the one we lost in 2013 (a pearl), and I was able to sneak in another pearl on the bottom for this baby. Every one is precious, no matter how long we get to keep them.

 

More siding and the dump trailer

First off, MIRA HAD HER SURGERY!! Fourth time scheduled, but she managed to make it without being hospitalized for illness, and we're past it! So far it seems to have been a VERY good thing.

On the garage front, the past week and a half has again shown a little progress. Owen was able to get his dump trailer from work over here, so we took the opportunity to fill it (which is how we've been getting rid of stuff instead of having to fill a huge dumpster all at once!) It was kind of fun at the end of this day to see that the only photos I had taken were of my boys carrying heavy things. First, we have Ebenezer dragging this big old part of an old swing set...

...and then Matt and Owen carrying what was left of Matt's grandparents' clothes line which had to be taken down to make room for the garage - the plug of concrete buried deep in the ground was HEAVY!! The two men were able to carry it from the side yard to the dumpster, and I was able to grab a photo before helping them lift it up and in.

Then we were back to siding. Matt and I got the east side of the front entry finished, and Owen came up from his room to the sound of the nail gun, and climbed up on the roof to help finish the part above the cantiliever, which let me and Reuben run some errands!

AND, Matt had time to finally start putting some of the old siding back onto the original house as well! 

It's not rapid progress, but every little bit gets us closer to done, and being able to do it by ourselves is WAY more cost effective than paying someone to do it!

A few weeks ago I started reading this blog out loud to the youngest four children, starting at the beginning. One of the reasons I wrote it was to communicate with all of you, but the other big reason I laid out in the beginning was so that *we* would have a record of God's faithfulness to look back on in the future. 

From Psalm 77:12-13 "I will remember the deeds of the Lord; yes, I will remember your wonders of old. I will ponder all your work and meditate on your mighty deeds." It's good for us to spend time reflecting on all he has done, big and small!

The youngest three were all born AFTER our first adoption and the big addition, and Evania and Gloria were both too young to remember any time before Bobbi and Mira came home, so although all of this is *their* history, they're not aware of any of it, and I'm excited to share it with them.

I was briefly mentioning this to Gavin one evening, and recounting how the blog is a story, among other things, of God's marvelous provision of what we need to do the work he has set before us, but how sometimes one way he provides is by making things take longer than we think they ought to take. He jumped on that one immediately, recognizing God's design to build patience in us as we wait on him, and we are absolutely seeing that in this building project as well. And part of patience is learning to rejoice in all of the little victories along the way! 

God's provision

 So, every February our church has a retreat at our church camp in Iowa. It's a very well-attended event, with often roughly a hundred people from our church attending! Getting half of the congregation together for 48 straight hours is quite a feat!

We've been so grateful to the camp for letting us use the staff dining room as our bedroom. The dining hall itself is the central gathering place for the weekend, obviously for meals three times a day, but all of our worship and teaching sessions are also held there, as well as various board games, a silent auction, the Saturday night variety show, and the constant coming and going of people. So, for us to be able to set up "camp" in this central location makes a trip like this possible (whereas having to hike across gravel drives in February cold weather with Grandma, Mira (whose temperature tanks any time you take her outside), Krassimir, Bobbi, AND Reuben would be enough to keep us home!) Even Owen joins us for the weekend (though he stays with the single guys, and Leah and the girls stay in their own room in the main sleeping lodge as well.)

We really enjoy these concentrated times to spend with our favorite people, both in conversation *and* in playing together. Problem was Saturday morning *this* year, while playing "Awesome Ball" in the gym...Matt twisted his foot, and a visit to the tiny ER half an hour away revealed that he broke his foot!!

Yikes!!

(Note that last year one of the other dads ruptured his Achilles playing Awesome Ball. Fun.)

But Matt was in good company this year, as it wasn't just the old guys breaking stuff; Gavin (who helped on the garage last fall), broke* his foot, too, playing volleyball later in the day! *turns out it may not have been a break, but he also left the weekend on crutches.

My favorite photo from the weekend

ANYWAY, what does this have to do with God's provision? Well, I can tell you that as we were driving home (after many of the other men helping us to load all of our things and people into Thunder) Leah and I were both very grateful that, after the snow, we were driving up into a covered garage and that there was a ramp we could use to push people up into the house and that there was a flush entry to get from the new addition into the rest of the house! The timing of the completion of the functional part of the garage and of Matt's injury could not have coordinated at a better time. 

Lifetime orphan

When we adopted Bobbi, she was at the very end of the window of eligibility for adoption. Every country's limits are different. Some make the cut-off as early as 14 years. Some, like Bulgaria, allow the commitment documents that begin the adoption process to be submitted up until the day they are sixteen years old. When we first met Bobbi a few months before she turned sixteen one of the things we told her is that our adopting her meant that she would be our daughter for life - "family" isn't just something she would have until she was a legal adult at age eighteen. We told her that she would be provided for and cared for, and that for any child that was born to us, we intended to spend at least eighteen years ensuring they had a safe place to live, food to eat, clothes to wear, and that she was no exception.

Hard to believe this was almost four years ago!

Being adopted means that you are not just no longer a child with no parents, you are no longer a person with no family. Because, for better or for worse, a family is something that you have for life! And children don't stop needing their parents just because they're 18 (or 30 or 40!) and parents don't stop caring for their kids when their children reach legal adulthood.

On the flip side, though, NOT being adopted means that you are not only a child with no parents, but are destined to be a person without a family...for life. Once these kids hit fourteen or sixteen, or whatever the cut off is, they are, for the rest of their lives, orphans. Orphans aren't just cute (or not-so-cute!) little kids. Orphans come in all shapes and sizes and ages and races.

I remember having a phone call with Toni, our adoption lawyer, a few months after Bobbi came home. There were a couple things we wanted to chat about, but one thing that was heavy on my mind was the other young adults living in Bobbi's home. I knew that in the past at age 18 they were either sent off to make their own way in the world, or, in the case of a more significant handicap (either mental or physical), they would be transferred to an adult mental institution. We learned from her that with some of the reforms happening in the system that included the new smaller scale group homes that Bobbi had been living in, some of the children would have the ability to stay there for a few more years of transition into young-adulthood. But the reality of the statistics was sobering: of the young women who "graduated" from state care, 70% end up living a life of prostitution. Of the young men, a slightly higher percentage end up in jail. It's not a pretty picture.

And really, how could it be? For those of you who have kids or have parents who cared at all for you, think about how much time and effort parents put into preparing their kids for life? They encourage them in their education, they help them think about and plan for the future, they help them get their first jobs, learn how to manage money and manage a household. Your family is where you first learn to trust and what it is to love and be loved. Yes, some parents/families do a better job than others, but as a general rule, this is a big part of what parents do. And after you move out at eighteen (or later!) your parents are still there for you.

Born six months after we brought Krassimir home, every interaction we had with Evania carried with it a depth of importance that I hadn't really thought about with my other birth-kids. There's serious life-preparation going on here! (Besides that photo being a serious old-timer! I think Owen's only nine years old there!)

To put it bluntly, the post-communist type orphanage system is NOT one that excels at raising kids in a way that prepares them for adulthood, and there's nothing like putting an unprepared eighteen year old kid out on the streets with a small chunk of cash to make a recipe for hopelessness!!! Suddenly they're out there, with no experience, no support system, no one to turn to if things are rough. If you add to that the additional complications of attachment disorders, institutional delays, institutional behaviors, it's pretty much guaranteed to be a disaster.

We have a friend named Lili who I introduced briefly a few days ago. She is roughly my age. She was abandoned by her parents to a Bulgarian institution at birth. She has limb differences (she wears a prosthetic leg and has abnormal digits on her hands), but is able to get around independently despite her odd gait. She always has a smile on her face. She loves animals - dogs, pigeons, cats - you name it! She is Roma, which, if you know anything about Bulgarian culture, is in itself a tremendous disadvantage. (Here's a current article outlining a bit of the discrimination the Roma people experience - you can find many more if you're interested.) She was, and still is, and always will be, an orphan.

After growing up in the same orphanage that Bobbi spent most of her years in, Lili hit that magic age of eighteen, but by some stroke of luck was allowed to stay as one of the staff at the orphanage helping to care for the younger children. Bobbi has quite early memories of Lili working with her and the other kids. Lili is the one that Bobbi credits with teaching her how to read.

At some point along the way, Lili's time at the orphanage came to an end, and she made her way to Sofia where she found a job working as a preschool teacher for Roma children. However, she also found "friends" who got her into situations where she made foolish mistakes that ended her up in a huge pile of debt. They used her, and then they left her. So now she's alone, friendless, and with substantial debt looming over her that she doesn't know how she will ever escape. She's got so many counts against her, and nobody to turn to!

She is one of the caregivers that Bobbi connected with on facebook after coming home, and about a year and a half ago, she kind of poured out her heart and her troubles to Bobbi (which I would agree, yes, is not the appropriate channel to do so, but what were her options?) and through an interesting turn of events, we arranged to start sending her a small chunk of money each month so she could rent a tiny apartment. She had been homeless for some time, living at the school where she'd been teaching, and living in constant fear that she would be found out and kicked out. Because she's got these loans against her, the bank skims off most of what she gets from her small paycheck, leaving her in a truly hopeless situation.

When this first came to our attention, we weren't sure what to do. It sounded like a classic take-advantage-of-the-rich-Americans kind of scheme, and yet...the plight of orphans is one that has long captured our attention - a calling that God has put on our lives because HE is a God who cares about widows and orphans, and he is also the one who has told us to give to those who ask (Matthew 5:24). She told us roughly how much she thought she would need for rent each month; we told her we would find a way to get that to her each month. She did some more looking, and guess what - rent was actually going to be about a third again as much as she'd originally told us AND she needed a chunk extra for a signing fee. And, oh yes, a bit more for a hot water heater for the bathroom. Boy did we feel like we were just maybe being taken! But you know what, we decided that was God's deal, and we were going to continue moving forward with it. Would you believe that very week we got a letter from our health insurance company telling us that our premiums for the upcoming year were going to be about the amount Lili needed less than the current year? Have you EVER heard of such a thing from an insurance company??? Nope. Me neither. And so onward we went, knowing that the next year's premiums would probably more than make up for this decrease, but not missing the timing of these two events right now.

Last summer when we made our trip to Bulgaria, Lili offered to let us stay in her apartment for the days that we were in Sofia. We agreed to do so for some of our stay, knowing that she would want us to, and also enjoying the experience of NOT being in a hotel. (We've had a few travel opportunities when we've gotten to do that in the past - a classmate's uncle let six of us crash at his house during a three-day field trip to Chicago when we were in graduate school, or a visit to my sister's when she and her husband lived in Amsterdam.) We enjoyed our time with Lili so much. She was so proud to show us around her tiny apartment, and she made a point of showing us the hot water unit in the bathroom!

She joined us on some of our exploring excursions, showing us some of her favorite places to spend her days and just chatting happily with Bobbi (because her English is about as limited as our Bulgarian!) She wouldn't let us do *anything* for her - not even treat her to a snacky breakfast sandwich at the little outdoor vendor across the street. (A sausage/bread concoction was the equivalent of about $0.75. She wouldn't take it. But she DID happily take Bobbi's leftovers later to feed to the local pigeons in her favorite park area!) We told her we wanted to have her join us for dinner on our last night, and had a time and place all set...and then she messaged Bobbi a few hours before and told her that she wasn't feeling well with an upset stomach and had to cancel. I'm sure it was just too hard for her to accept anything else from us, and that she had no concept of how little it would cost to treat her to something special.

I love this dear woman. I admire her so much. The way she toughs through her disability with a constant smile on her face, the gentleness and concern she shows for the animals living in her city, the delight with which she talks about the children she works with. But she is heavily burdened by the weight of the debt she's under, and even though through us she's provided with the basic necessity of a place to live, she longs to live free. A few weeks ago she unburdened her worries onto Bobbi again and asked her to ask us if we knew of any way to help her. I've been messaging directly with her via facebook (and the infamous google translate) and gotten details on her loans - she's got three different loans against her, two to two different banks, and one to an individual. Our hope was that we could perhaps use the money we've been saving up for the garage next summer to help her get back to ground zero and push our project out another year, but honestly, what we have saved is not enough. In some ways I'm glad, because it means that we, too, are left leaning on God to solve this problem, if he so chooses.

So I'm going to do something on this blog that we have not been comfortable doing for ourselves. I'm going to ask you who are reading if helping this woman is something God would have you do. I really don't think I've currently got enough readers that even with your help we're going to erase her debt entirely, but wouldn't it be amazing if she could get a small sense of what it is to be part of a family and know what it is to have a group of people rally around her to help her out?

She shared something with me this morning [well, the morning I started this post!] that I'm going to (via the aforementioned infamous google translate, so bear with some of the awkwardness) share with you:

"Hello, dear dear family! I want to THANK you again for everything you do for me and for my existence in the big city of Sofia. I grew up in an institution without parents since I was a child and I had not prepared myself for the real reality of life, despite my advanced age and long years of loneliness and only loneliness. I made mistakes in my life that I want to correct and be filled again with a smile on my face...I haven't received a clean salary for a very long time because I have a loan...I want to be independent and not have any loans and credits. To pay rent and everything - electricity, water, food..."

She continued, sharing her dreams of someday being a wife and mother, and living a responsible life. But she feels trapped by the despair of the weight of this debt that is over her and she has no way of paying it back. On her meager salary (and I don't believe she's able to be working at all now with the pandemic, which I'm guessing is why this is coming to a head again with her), her debt is slowly growing as she just does not have the means to pay it back, so she sees no way out. So much in her note from this morning grabs me. First of all, her "I had not prepared myself for the real reality of life." I read that and I think, first of all, I admire the way she takes full responsibility for where she's at. She's not blaming those who took advantage of her. And second of all I think, we humans weren't designed to have to prepare ourselves for the reality of life - we were designed to have families to help us with that! And communist-era Eastern European institutions have never been known for their great skills in preparing handicapped, ethnically persecuted children with the tools they need to be successful in life! And the loneliness - I have blogged only tangentially and superficially about the ugliness of what abandonment and neglect does to a baby, toddler, young child, teenager because I don't want to dump all of Bobbi's junk out on the internet for everyone to see, but let me tell you it is UGLY what it does to a human being to grow up without someone to love them!!! It damages so many fundamental things about what it is to relate to those around you - who to trust and how to trust and even the ability to trust, and then, as in Lili's case, she tried to trust - wanted to trust, wanted to love, but with no skills whatsoever, got burned, and everything nasty that you've ever believed about your own unworthiness and unloveableness gets thrown back in your face. Lili amazes me with her ability to keep on, to NOT be afraid to dream, and that's why I'm going to use this connection that I have with those of you who read this blog to ask: would you be willing to share some of what you have been given to make a difference in the life of this orphan for whom it's too late to have a "real" family, but to whom we have been given the opportunity to be a family to her?

Matt and Bobbi with Lili last summer as we were leaving Lili's apartment for the last time. Yes, this is the apartment on the seventh floor with the elevator that sometimes works...and sometimes doesn't. YOU try walking up seven flights of stairs with a prosthetic leg! Lili is amazing.

Walking through Lili's favorite Dog Park by the European Union building.

As we've mulled this over for the last few weeks, we've decided to not go with a formal fund-raising platform. In the spirit of being family I'd rather go about it in a more personal way and through that avoid the fees associated with using internet fund raisers. Please see her, and ask if this is something you are supposed to be doing. If you want to help her out and have our address, you can send a check, or drop something off at our house. You can use paypal (glewwes at gmail dot com). If you don't have our address, but would prefer that method, send me an email. Matt and I were able to send enough extra with our last transfer to her to pay off the smallest of the three loans and part of what she owes the individual. Whatever we collect between now and the end of August I will send to her at that point when we send her rent.

The pain and loneliness of being an orphan doesn't stop when you turn eighteen. We have a chance to do something about it for this one! Will you help us be Lili's "family"?

Completion

...I always pray with joy...being confident of this: that he who began a good work in you will carry it on to completion at the day of Christ Jesus. Philippians 1:4,6

How many times am I reminded of this in my own life, or is an encouragement that I share with others - there's this tension of the "already/not yet" sort of living day by day as a follower of Jesus. The author of Hebrews says it well, too: For by one sacrifice he has made perfect forever those who are being made holy. (10:14) The verb tenses used there are significant: "has made" is past perfect tense - something that has been done and completed in the past. "Being made" is a very present tense verb - this is what's happening RIGHT NOW. We are in the process of being made holy, and Paul gives us above the time frame for when that's going to be finished.

Guess what Matt and I did a few weeks ago - we finished putting up the last of the siding (the horizontal wood boards) on his office of the west addition!

We began that project over seven years ago. And through all of those seven years, when we looked at that office, that is what Matt and I saw, even though everyone else just saw this:

from 2015

It's pretty neat to finally have what we've been able to see all along be visible to the rest of the world! And, like so many other things in life, our little lives here give us little glimpses into the truth of the bigger picture of what God's up to, what he is like. He, too, has a design for the lives of his people, and even though we can't always see it, either in ourselves or in others, that doesn't mean he can't see it, and it doesn't mean that there won't be a day when everyone will see it.

Oh, to see with eyes that can see what he sees. Come, Lord Jesus!!!

Whirlwind

It's been a crazy few days with all sorts of things happening, not necessarily in the most sensible order, but kind of all in a jumble all at once!

Thought you might be interested in seeing what's been going on:

First, Bobbi was on the local news Tuesday night.

That prompted a GoFundMe page as a quick way to handle all of the interest the story generated - which is nuts to me - we still don't know if insurance will cover the chair or not - it very well might! But we don't know, and even with that "maybe we won't need any help at all" built into it, we still had a seriously overwhelming response.

And, though I'm not posting this here asking for donations (which is why I didn't post it when we first put it up! That's not what I intend my blog to be for!) I thought that all of you who care about what's going on in our family ought to know what's been going on!!

More later, hopefully, but didn't want to wait too long.

A precision time table

I think mentioned here that Bobbi was ready to initiate a search for her birth family, and we started with just a simple post on facebook that we asked our friends, and particularly our Bulgarian friends through the Bulgarian school here where we live who have lots of Bulgarian friends in Bulgaria, to share the post, thinking that was an easy (and free) way to start.

As we suspected, nothing came of it, so we went to the next step which is to hire a private investigator that used to work with our Bulgarian adoption lawyer who has helped a number of other families that we know of also find their children's birth families.

We liked his policy that we don't pay until he finds something. Once he has a report to give, then the transaction happens, and following that, he'll deliver the information he has collected - photos, video, and responses to a variety of questions that he asked family members.

We have prayed for years that the timing of this would happen at just the right time. When we first contacted the investigator, no one had any idea the whole world would be shutting down in the very near future!! I was fully prepared for this to bring a delay in the whole process, but amazingly, he and his team were able to locate Bobbi's birth family, get the information they were seeking and get back to Sofia before things ground to a halt over there.

Just tonight we got the email saying the report is ready. We expect to have it within the next few days, depending on how quickly the payment processes.

Starting last week, our church has been live streaming the morning worship service. Last week there were about 100 people at church, meaning just over half of the congregation stayed home. It was during the Sunday School hour that the announcement came from our MN government about schools shutting down and recommending no gatherings over 50 people, followed quickly by the no more than 10 recommendation. So far MN has not yet ordered us to stay home, but *we've* been staying home because of the make up of our household! This morning our pastor adapted an article written by John Piper called "Don't Waste Your Cancer" and spoke with us about how to not waste our pandemic. The regular sermon following our sermon series in 1 Samuel will be available to us via pod cast tomorrow. ;) One driving point was that even this (perhaps even especially this) time is designed for our good, and that we will waste this time if we are not viewing it in light of God's goodness and his glory and the work that he is hoping to accomplish. With that as a backdrop, I am interested to see what develops with the timing of this new page in Bobbi's life as she, for the first time, is going to get to see someone who "looks like her."

"Do everything you can at home"

So Friday Minnesota got our first case of COVID-19 confirmed, and then Saturday, Mira took one of her down-turns. Our typical approach when she tanks like this is to take her to the ER at Regions and then they transfer her up to Gillette. We called ahead this time, like we always do, and their recommendation (which was one of our main thoughts as we called) was to, "do everything [we] can at home."

So we are! Thankfully, she's got a running prescription for a decently punchy antibiotic that targets the pseudomonas that she has permanently dwelling in her lungs. We are supposed to use it when she hits her "red zone" for her respiratory cares. In her "green zone" we are doing 3 times daily vest treatments, and an inhaler twice a day. In the "yellow zone" which she honestly never really hits for more than a few hours, we add albuterol a few times a day and another vesting. In the red zone, we do all of the above and add her tobramycin inhalations to go directly into her lungs. I think the concept is that we knock down a bunch of the bacteria so she can go back to normal again.

She's still running a low-grade fever, and we're still suctioning nasty greenish-yellow stuff, but she's pretty stable at that point overall, so not progressing to where she needs hospitalization over the risk of exposure to other exciting things.

Check out the neat vibrating cat a friend gave Mira! She really enjoys it.

We know part of what she's dealing with is the same nasty viral whatever that about half of us in the house are also fighting. At this rate, I doubt Reuben will be well enough to start his stay at Gillette to ramp up his diet to the full 3:1 or 4:1 keto ratio that they would like to see him at. He's supposed to be admitted Tuesday morning, but he's got a lot of getting better to do before he's ready for that!

In the meantime, even though we're still seeing pretty steady, constant seizures in him even with the 1:1 diet, they are definitely less severe and debilitating than the seizures were before the g-tube and the low-grade keto diet. Because of that, Reuben was able to be fully involved with his favorite yearly activity again this year, including the entire day yesterday, an absolutely gorgeous day.

Boiling away - we need to take off 39 gallons of water for every gallon of syrup we end up with.

Reuben is tireless when it comes to stoking the fire with fresh wood. Whenever I comment to him about how hot it is, he points to himself and says, "Reuben," with a little knowing look on his face like he's saying, "I'm the one that made that fire so big and hot!"

Leah's taken over most of the sap runs this year, going through our yard and two neighbors' yards for a total of 18 taps.

The foam that we skim off the top while it's boiling is a hot commodity!

Bobbi didn't stay long, but did pop over to see it between getting home from an errand with mom and heading down for her first walk of the year on the paved trail in front of our house!

Our two days

No pictures, though I wish I'd thought to take a selfie ;) but we had a really wonderful two days away. We were so glad to have TWO days and not just the one. The first day we got to spend at our neighbor's house, which was perfectly quiet and private and she'd even purchased a really tasty lunch for us ready in her refrigerator (and chocolate for each of us on the coffee table!) so we didn't have to leave until supper time when we had to shuffle a few things at home before leaving again for the evening. We got our nap, got to read a book together, talk together. Wow.

Saturday was more of a planning, note-taking, list-making sort of day, which we spent largely at the library. Even though it was a shorter day than Friday, it was still quite productive (whereas Friday was more connective), and we came away from the weekend refreshed, refocused...and with a to-do list. 😀

We need to do this more often, even if it's just for a few hours!

The bathroom is still coming

Every month or so, Matt gets part of a day or two to get out to the bathroom. Yesterday was one of those days, and significant progress was made!

People will comment sometimes that I am very patient. My reply is often that it's because God has given me LOTS, ........L.....O.......T........S......... of practice.

The results of yesterday's labor:

The shelf above the toilet is installed (still needs to be varnished). The off-center will make more sense when it's all finished. It's a result of building against the existing wall and where the vent stack is, but we've got a plan...

 And the tile on the sink wall is 70% or so completed!

What bathroom?

Supposedly someday we'll be able to use the bathroom we started working on nearly a year ago. Working on it just hasn't made it to the top of the list, probably since the last time I posted about it, with the exception of one coat of varnish Matt got on some trim last week.

And in the meantime we learn patience. All of us. I'm pretty confident that Bobbi would be able to use the toilet by herself if we had the new bathroom ready. As it stands now, one of us has to help her with the transfer every. single. time. Which is fine. But I know that she'll pretty quickly be able to be more independent, even in that one area, once we get it done.

Rehab: Day...I don't know - what day is it??

This is brief, because I've got a bit to do to help Mira settled in for bed - single-parenting these nine is keeping me busy!

BUT, I do want to share a photo that Matt took this morning.

Look who's walking in the pool!! Slow, small steps, and up to her neck in water, but she was walking. First steps since the surgery.

And, as I was looking at Matt's photos to grab that one, I saw two more that he must have taken during her afternoon session:. First, here she is on a sort of bicycle type machine that alternately flexes her legs to varying degrees as the therapist sets it.

 And back again at the parallel bars, but this time, from what I remember Matt telling me, with no KIs!! (knee immobilizers) It was just for a few minutes, but that's a big step forward.

Regardless, during their weekly Tuesday meeting, the team working with Bobbi has set us a tentative discharge date...of...December 20th. That's still sixteen more days!!! We knew this was a big deal surgery, but what we knew was six weeks immobilized in a casts, and then lots of therapy. We did NOT know until after the surgery that inpatient rehab for a week or two was a possibility. Okay. That's all good. We also did not know that six weeks in casts could be six to eight weeks (though those last two weeks went SO much better than we'd originally thought when we learned at five weeks that we were not nearing the end). And it wasn't until today that we learned that the one to two week rehab stay might actually be a four week stay!

But, after all that, Bobbi's going to get her wish of being in the hospital over the Christmas season! When Mira was in over her birthday and all of December and Christmas last year, she was visited by Santa a number of times. We "knew" (ha ha, what we know!) that Bobbi's surgery was going to be in the summer, so neither over her birthday OR Christmas. But here, on one of her first inpatient days, they had a November Birthday Party for all the inpatient kids with a November birthday, so she snuck in on that one, and now she'll be there until the few days before Christmas, and I have a feeling she'll get a visit sometime during that time from a man in a red suit.

Rehab: Day 5 (though it was only a half day...)

Last night our (very small) small group met for supper and Bible study like we've done on Friday nights for as long as Matt and I can remember. The group has shifted and changed over the years, but it seems like that Friday night slot has always been the best time - nothing going the next day means that we have the luxury of the time that we need.

We're going through Ephesians right now. We did a quick blitz through it at the end of the summer right before our dear friends, the Martins, moved three hours north of here, wanting to share with them what we knew we were going to be studying at a slower pace in the fall. I mention that because even after years of reading that Book, it never ceases to be fresh and new. We've gone through Ephesians many times over the past years, even reading part of this chapter (3) at our wedding, but last night I saw something that I've never seen before. Paul's been talking about the amazing mystery of how the Jews (his chosen people) and the Gentiles (everybody else) have been made into one new "man" through Jesus Christ. I'm not going to take the time tonight to go through everything we discussed last night because I need to get to bed, but am waiting for my phone to charge before I head up, but here's this, which I have honestly never seen before:

...so that through the church the manifold wisdom of God might now be made known to the rulers and authorities in the heavenly places. - Ephesians 3:10

A few things. First, this it is through the church that this thing is going to be displayed (and what thing? Well, the manifold wisdom of God!) and this church is one body made up of each one of God's people, Jew, Gentile - all of us. And to whom is his wisdom made known? This is the part I'd never noticed - it's made known to the rulers and authorities in the heavenly places! The cosmic scale of this is mind-boggling to me. Through us, the church, acting as the church, through that God is showing not just other humans, but the invisible powers of the spiritual world, how very wise he is. This is big stuff, and he's doing it through his Church.

It makes the next few verses when he's talking about his suffering, and the boldness with which we can approach God in prayer make a bit more sense. It's also another reminder to me that every mundane piece of my every-day life is feeding into something beyond what I can even begin to imagine.

So, for anyone still reading, because I'm really shorting this, what in the world does this have to do with the title of this post?

Well, Bobbi had a good night, and it was great having Faith stay with her to give us a bit of reprieve. Faith left this morning after Bobbi went to her first therapy session, and my plan was to go down before she finished her sessions for the morning. I had to be back at the house no later than 2:00. As I was working out the day in my mind, waiting for Eben to wake up and nurse so I could leave, and wondering how Bobbi was going to tolerate the times she would have to be alone today, Rose (Krassi and Reuben's Rose) texted to see if sometime after 2 would be a good time for her to go visit Bobbi.

Um, yes!!! That leaves Bobbi with about an hour to herself. Perfect.

So Gloria and Eben and I got down there in time to spend about half an hour with Bobbi. She was having a tougher time - the things they're wanting her to do hurt, and it doesn't feel like she's making much progress. The session ended on a good note, though. Her therapist finally convinced her to do one minute of standing at the parallel bars. She managed to get her up to standing, and at the end of the minute asked if she could do more or if she was done. "I don't know," was her response. I smiled with pride at the internal battle I saw. "I don't know," is NOT, "No." It's more like, "I don't know if I can, but I want to, but don't know if I've got it in me." By that point, we'd made it another 30 seconds, and she decided on her own to go for three minutes. By the time we were done, she'd made it for SIXTEEN minutes!!!

Victory. On many counts.

Our friends, the Dunmires, told me earlier this week they wanted to bring some of Bobbi's favorite food to the hospital tonight. He stopped through our house to drop some (tons!) off for the rest of us before heading down to see Bobbi. Good. Someone to break up that part of her day, and do supper with her. Even there I was not missing the fact that through the simple actions of his Church, our daughter was being cared for.

Imagine my surprise when Matt finally called me a bit ago to touch in before bed, and he told me that Rose stayed until Doug got to the hospital, and Doug was still there when Matt got down to the hospital. All day long, and with Faith, Rose, and Doug, Bobbi had to spend less than an hour alone. They didn't plan that out together - each of them was just doing their own little part in their own weekends, but behold! the manifold wisdom of God.

And it's not just us who are witnessing it. Beautiful.

Rehab: Day 4...updated

Well, as they say, "All good things must come to an end."

I'm not going to say that we're really at the end, but today (starting last night) was a rough day for Bobbi. She's working crazy hard, with a very full schedule of things that are hard physically, don't always feel good physically, and are wrapped up with many emotional things that make it hard mentally as well. It also happens to be the day that Grandma had to go back to Wisconsin, which means that on her roughest day going into it, Bobbi also had to spend the most time alone that she's had to do all week.

Daddy got to go back down to spend the evening with her - he left about an hour ago. Hoping that puts a nice end to a long week. Tomorrow she has a half day of therapy, and then Saturday afternoon and Sunday off before starting up again on Monday.

Phew!

~~~

UPDATE:

Matt just emailed saying that Bobbi was in better spirits when he got there this evening. He found her chatting in her rolling stander at the desk of the Ronald McDonald house. My first thought is that she was there scoping for potato chips. [grin]

But the best news is that our friend, Faith, is going to be able to spend the night with Bobbi, so she doesn't have to be alone AND I don't have to be alone, here, either. So very good on so many counts.

Rehab: Day 1

Since yesterday was really just admit and get settled, today is what really counts as Bobbi's first day of rehab.

Eben and I swapped with my mom in the morning so I could be there for the OT evaluation. Bobbi and Eben spent a few minutes catching up before the therapists arrived to bring us back to the therapy area.

The session was as much working as it was evaluating. As the student went through a list of questions with me about our goals for Bobbi over the course of the stay, the therapist herself had Bobbi working - sitting up with her knees tolerating as much bending as she can, and playing Go-Fish while making her reach all over with her right (non-dominant) hand both for fine motor and core/balance practice.

I had to laugh as, while we were discussing her current bathroom situation at home, I thought the quickest way to show them what we have and will have (if Matt ever gets more than 20 minutes a week to work on it!) was to just bring up the appropriate post on the blog!

That hour long session was followed immediately by 30 minutes of physical therapy. Standing was the big agenda for the day. Two minutes was the therapist's goal, but Bobbi pushed through to five.

 Eben managed to keep himself occupied.

Then we were back to our room, with a quick detour through the regular clinic area to say hi to Daddy and Mira while they were waiting for her Quick-Care clinic appointment that we set this morning. This one did NOT end up in a hospital admittance, though Matt as a matter of course keeps a bag packed with the things she needs for a hospital stay and brings it along any time we're getting her checked out at the Quick-Care clinic because more often than not it results in a stay. But not today. She's still quite agitated, but neither we nor the doctors could see an obvious cause for the disautonomic storm, so have her back home for observation. There may not be a reason. Her lungs sound good, and there's no obvious signs of a UTI, so we're just going to keep an eye on her, knowing that a trip back to Gillette is easy enough if we need to do it.

The two families in the rehab unit that we met at lunch today are from Wisconsin (one state away) and New York (a little farther than one state!) It's just another reminder of how grateful we are to be this close to a really great medical facility. It's still a little odd when you can't walk down any hallway without not only recognizing staff, but having them recognize us, too!!

Eben, Mira, and I came home after lunch, and Matt stayed for her afternoon therapies, with him and my mom swapping after supper. She will stay the night again. We're grateful for that because Mira, although home, is not very comfortable tonight.

Reuben appears fine

He and I were there and back within four hours. Not the most restful way to spend the night, but we're back, and super grateful for our friend who took a text a little before midnight and was here soon after. Bobbi (and thus the rest of us caring for her) fell asleep a little after 4am when Reuben and I got back. Short night, but no one else has been admitted to the hospital!

Dozing in the ER waiting room.

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.