Stayin' Alive

Back when we were a small family of six,

and we were looking into educational options for Reuben who was three-and-a-half and going on two years into his epilepsy diagnosis, I was really impacted by the amount of resources our government, via the public school system, was willing to invest in "fixing" (or probably more accurately, helping Reuben overcome) his disabilities in order to succeed to the greatest degree possible. Part of what made me, as an already-home-schooling mother who was herself a home-school graduate willing to consider the public school as an option for Reuben was that one of the (many) reasons that we were interested in educating our children at home was that the student-teacher ratio was better than what any school could offer our kids! Realizing that Reuben, as a three year old, would be in a classroom with a teacher, para-professional support, and a speech therapist and occupational therapist...and only one other classmate...and would thus be getting a WAY better student-teacher ratio than I could provide at home (even with only four children!) was a big piece of helping me be willing to put my little non-verbal, vulnerable three year old Reuben onto a bus three mornings a week and send him away to school. And I still think it was a good decision in many ways, and that's not the major reason I'm actually writing a real, live blog post.

The real reason is something tangential to what that government-level investment made me think about. Already at that age, we could see a softness in Reuben toward the things of God, and a hardness in our oldest. As I looked at these two little boys, I realized that the question of who had everything and who needed help all depended on the perspective from which you were looking at the boys. If this life now is what's really important, then Owen was set - smart, friendly, athletic, motivated - and Reuben was not - non-verbal, physically awkward, developmentally delayed, a progressive, life-threatening medical condition. But if this life is just a little blip at the beginning of eternity, then exactly the opposite is true - all of Reuben's challenges will shortly be removed and all of Owen's advantages will accomplish nothing. The brokenness gets flipped on its head!

So now to today. Here in Minnesota, we've been carefully following the stay-at-home orders which started I-can't-remember-when and expire tomorrow [when I originally started the post! They've been over for a week now.] As we begin to make choices about who goes where and when and how and how much, one of the things we need to keep in mind is that the answers to those questions look different depending on what perspective you're looking at them from! It's easy to sound almost flippant, and I know this topic, especially as it relates to COVID is rather loaded these days, but one thing we've got to come to terms with is what our main goal is for our children. Is it merely "stayin' alive"? Or is it something other than that?

Much of that centers, in our family, around Mira. Way back when Krassimir first came home, two of the other children adopted from the Pleven orphanage died relatively soon after coming back to the States with their families. Since then, there have been more. It was and is really tough to lose those precious children. I'm not going to say that it was like losing my own child, but it felt like the next closest thing, as it felt like losing a sibling of my own child. I know Krassimir didn't know most of the other children he grew up with since they all lived mostly in their own cribs, but *I* still felt a connection was there because they had shared the same horrific history.

We went into Mira's adoption knowing that she was a very complicated child medically, and fully expecting to outlive her. As I mentioned in our update a few weeks ago, one of our desires in making her our daughter was that she would not have to die alone, but could die surrounded by a family - her family! - that loved her. So we've known from the start that the "success" of our adoption of Mira is not something that will be measured by whether she lives or dies. However, we never expected to be in a situation like this where the choices we make could have a large impact on when she dies.

It's one thing for a person to decide that they're not afraid of dying and are going to live their life during this time without "hiding" from exposure to the virus. It's another thing altogether if that person would go out to the grocery store without taking any precautions and then go to visit a friend who's going through chemo. Somewhere there a line has been crossed between living your convictions and being careless about the sanctity of life.

And therein lies the question. Do we protect Mira from exposure to COVID-19 at all costs? Or do we just go ahead and expose her and get it over with since death will set her free from the constraints of the broken body she lives deep within? Neither extreme is right. The right answer falls somewhere in the middle, and that's what makes it tough. Our job as her parents is to navigate - and not just for her, but for the whole crew that we're responsible for! - where in the middle is the right place to walk. I once heard a pastor say that the devil doesn't care which side of the narrow path you fall off, as long as you are no longer following the lead of your shepherd. (So that thought's been rolling through my head through all of this, and then our pastor said something similar during his sermon yesterday!)

The answer, then, I believe, falls in making our choices every day by submitting them first to God, asking him for his blessing and his guidance and praying as Jesus taught us: Your will be done.

~~~

Life is precious, and health and wholeness are things that when we work toward, we are in alignment with the heart of God. But, there is a difference between treasuring life, and avoiding death at all costs.

Here goes...

Bobbi's new baby

It's kitten season again, and our neighbors are fostering again, and we've been having some visits from the kittens. Bobbi's got a favorite, but we've got to wait a few weeks before they're fully ready to be "adopted."

We're looking at the one in the middle.

Meet Tihomir! Or Tihomira. We'll wait for confirmation from the vet this time. ;) And while Tihomir/a was happy with Bobbi, everyone else spent plenty of time with the other two as well!

Krassi in the sun

Krassi is SO happy to spend incredible amounts of time outside when the weather is good! Many afternoons he'll be the only one out there (we can do that when the mosquitoes aren't bad - otherwise he needs someone near him to help swat!) and I'll periodically go out and ask him, "Krassi, do you want to come inside?" And then I'll wait. No response. So I'll ask, "Krassi, do you want to stay outside?" and I'll get the immediate I want, I want response in sign language.

I tell you, that boy has not latched onto sign language the way we had hoped he might, but he takes that one sign that he's got really well and uses it to his full advantage!

More in the news

Bobbi was in the Minneapolis Star Tribune yesterday (you might not be able to see the article without being a subscriber?? On my laptop I could see it, but not my desktop - maybe I've used up my "free" articles on that computer already? I don't know...)

And this morning in the St Paul Pioneer Press. (Note that a few of the dollar amounts are off in this one, but you get the general gist of it...)

Yesterday when she was out walking, a few people stopped her and asked if she was the girl whose chair had been taken.

If I get a chance beyond the few minutes it takes to throw this up, I'll write a little bit more about all the ins and outs of how this is affecting HER (because it's worth sharing!) but this is what I have time for. We're thinking this is going to be a good year to make sure we get a full veggie garden put in, so we're using the good weather to get things prepped!

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.

Wheelchair thief (?)

Well, we don't know if it was malicious or innocent, but someone stole Bobbi's wheelchair from where it was waiting at the bottom of the driveway while she was walking with Rose on the path yesterday!!!

It's like having your legs stolen! Now that she doesn't crawl since her surgery, the chair is how she gets around. We still have her old chair from Bulgaria, but it's very limiting for her mobility, particularly in the fact that it doesn't fit into her bedroom!!!

Besides the fact that her little bag that hangs on the front is kind of like her purse - all of her favorite chapstick are in there, a few other personal items, and her wallet...with her state ID in it. This is part of why we're thinking it's increasingly unlikely that whoever took it did so thinking it was "free" at the side of the road. You'd think that once they got it home and saw that it had bag(s) with personal items in it that it wasn't intended to be taken. It also wasn't by the curb, but was on our driveway on our side of the walking trail. And, seriously - not that far away was a young woman walking with a walker with her PCA next to her!! Ummmmm.

She's handling it quite well. We'll see how that continues once the novelty wears off.

In the meantime, we've contacted the police, so they've got their eyes open, and we're checking craigslist, and, the most exciting part is that the local new station came out this morning to interview Bobbi and Matt, and she'll be on television this afternoon!!
 

Down at the "scene of the crime", Dad and Bobbi talking into the camera with the reporter.

So, if any of you see this chair, let us know!!!

In the meantime, we're already in process to see if our insurance will cover a replacement chair. Not sure how or when all that will pan out. We sure would just like to find HER chair! And her chapstick.

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!