A quote

(From a biography of Jim Elliot, written by his wife after his death, and comprised primarily of his journal entries and letters to friends and family. This particular portion is from a letter he wrote to her before they were married as she was facing a decision she feared to make.)

"I pray for you, that all your misgivings will be melted to thanksgivings. Remember that the shadow a thing casts often far exceeds the size of the thing itself (especially if the light be low on the horizon) and though some future fear may strut brave darkness as you approach, the thing itself will be but a speck when seen from beyond. Oh that He would restore us often with that 'aspect from beyond,' to see a thing as He sees it, to remember that He dealeth with us as with sons. Amy Carmichael's words come to me:

'He hath never failed thee yet.

Never will His love forget.

O fret not thyself nor let

They heart be troubled,

Neither let it be afraid.'"

- from Shadow of the Almighty, p 118.

Thanksgiving/ Five Years **Now with photos!**

The day before Thanksgiving marks the anniversary of Reuben's initial diagnosis of epilepsy. It would still be another year and a half before we would learn the root cause of his seizures (ring (20) chromosome syndrome), but at the moment, we knew 1) that our baby boy was not going to just die for no reason because 2) epilepsy is something you can LIVE with!

This year marks five years since that Thanksgiving that changed so much about our life. Five years seems like a lot longer — more of a "milestone" year than three or four.

It was also during that hospital stay five years ago (when I was 10 weeks pregnant with our fourth, Rinnah) that I was up in the night walking down the hall to the bathroom (because I was 10 weeks pregnant!) and was overcome with the realization that the fear of adopting a child with special needs had been completely and suddenly lifted from me. There's nothing like realizing you are already the mother of a child with special needs to help you realize that what we call "special needs" is not something to be frightened by.

What I remember most about that day five years ago was the intensity of the joy that both Matt and I were filled with when the doctor came soberly into Reuben's room to inform us that he had epilepsy. After both of us, individually at first, and then together as we realized the other was also feeling that way, over almost the whole of the previous year, were having a sense that we weren't going to get to keep this precious baby boy, and then to come off of a few days where he'd twice completely stopped breathing for a long enough duration of time to start turning blue in the lips, and to know that God in His mercy had been gently preparing us for months to lose our baby, to then hear that he *only* had epilepsy — a condition that is not incompatible with life — felt like we had gone from being certain we were losing our son to having him given back to us all in a moment.

Yet, at the same time, we *did* lose our son, at least the son we thought we had. Many of those losses have come slowly as we grieve for different things that Reuben will never have or do or be, and many come at unexpected times. I laugh now as I think of one of those milestones — when Reuben started kindergarten last fall. As a young mother, I often heard from people when my first-born was still in diapers as his third birthday was closing in, "Well, he'll get there — after all, you never see a kindergartener going off to school in diapers!" Well, turns out they were wrong. I sent a kindergartener to school in diapers. And this fall, a first grader, too, but sending him as a diaper-wearing first grader didn't cause the same catch-in-the-throat sensation that it did when he was a diaper-wearing kindergartener.

I hit another rough spot about two weeks ago when a rougher week culminated in an ordinary Saturday when our three biggest oldest most capable (how DO you categorize it? Owen, Leah and Rinnah. My first, second, and fourth. The second, third, and fifth oldest of our six...so far. Let me digress here. I've never written about it, but I laugh at all of the stereotypes on birth order when it comes to our family. Rinnah, as the fourth of what will soon be seven, is technically the middle child. But she's anything but the middle child. She's part of the upper half as far as the ones who are the most capable and are given the most freedom, responsibility, and independence. She's one of the lower half when it comes to size and age, but nowhere does she fall in the middle, except for the order in which she joined our family.) Anyway, those three went heading up to their friends' house up the road, and were back soon, informing me that their friends' mom and dad were out taking a walk together (their oldest is 14 and able to keep an eye on the younger three children who play with our kids) and afterward they were going somewhere all together. I felt a wince of emotional pain as I thought about how much *I* would like to go with a walk with *my* husband on a beautiful fall day like this, but brushed it off. However, a while later when I looked out the front window to the regional trail that runs in front of our house and actually saw them out walking together, I lost it. Tears at what I couldn't have, at what I wanted that just won't ever really be mine — the simple chance to spur of the moment say, "Matt, it's a beautiful day — let's go take a walk!"

Yes, I realize that we still have rather young children, and that in a few years Owen, too, will be old enough to stay home for a short period keeping an eye on the kids while Matt and I go out for a walk, but unlike some families where the phase where the kids are too young for some of those things is a temporary thing, the life that God had called us to is one where the phase where we have children who are able to stay home and care for the needier ones is the temporary phase. There will come a day when our last capable child will move out and it will be once again me and Matt and "little" ones who need someone's constant supervision.

[A note: I realize that there are many solutions to this situation — we have many friends who are willing and capable of coming over and watching our children, even our children with complex needs, so we can get some time alone together. We have PCA (personal care assistant) hours for both Reuben and Krassi from the county that we are not currently using in that form that we certainly could down the road which would allow us some regular flexibility. Not being able to go for a walk isn't the real issue. The real issue this raised for me was that I was letting myself be discontent with the good things that God has chosen to give me in the life he prepared for me — a life that includes Reuben and Krassi, not accidentally, but by his good design, and I can, and have already in a number of places, go into that in more detail.]

That very night, the next Psalm on my "read-through-the-Bible-in-a-year" bookmark was Psalm 16.

The lines have fallen for me in pleasant places;
    indeed, I have a beautiful inheritance. (v.6)

Oof. Coming after that day, that was kind of a tough one to read. But it's not alone.

I say to the Lord, “You are my Lord;
    I have no good apart from you.” (v.2)

"No good," apart from Him. Not walks, not the freedom to do what I want to do, not having all of my children out of diapers. None of those things are good apart from him, and apart from Him, he who is my only good.

I have set the Lord always before me;
    because he is at my right hand, I shall not be shaken. (v.8)

And if he is NOT at my right hand, that promise does not stand - it's a conditional promise, conditional on my choosing to stay near him.

The Lord is my chosen portion and my cup;
    you hold my lot. (v.5)

"My chosen portion." It's a choice - choosing to walk with him, choosing to look to him to be everything I need.

You make known to me the path of life;
    in your presence there is fullness of joy;
    at your right hand are pleasures forevermore. (v.11)

Therefore my heart is glad, and my whole being rejoices;
    my flesh also dwells secure. (v.9)

When HE is put in the right spot, then I can have fullness of joy — my whole being, not just some spiritual corner while the rest of me is miserable. And one thing I love about my God is that he doesn't leave me to figure this out on my own, but rather, he makes known what the path of life is. Life worth living, full of joy, gladness, security, is life lived wholly for him and in his presence.

There's a beautiful ending to the story of this weekend, too. And I'm taking the time to record it, even though as I'm finishing this post up it's almost eight months after I started writing it, because *I* want to remember.

The next day was Sunday. A beautiful Sunday in November - warm enough that we were able to get outside. And if any of you know me and Matt, one thing we really enjoy doing together is working outside in the yard.

On this particular Sunday we had the added bonus of having been given two flowering crab apple trees by our neighbor/2nd cousin who works at a garden center that was clearing out stock they didn't want to winter over. It was late in the season to be planting, and the trees were quite root-bound, but there's nothing to lose, right? Our kids' friends (you know, the ones whose parents got to take a walk together the day before) were over - the girls were playing "house" with things gathered from around the yard. We put the boys to work digging a hole (Owen's always wanting to dig holes) and Matt built a fire with Reuben. Krassi spent some time in the wagon watching while Matt and I got to (together, mind you!) settle that tree into its new home in the ground.

How could anyone not want to give their life fully into the hands of a God like our God? Yes, absolutely the pleasures that he offers are not the pleasures that this world offers, but as I live this life, I know that it is true when the Bible says that he knows our weakness and is tender and kind. Giving your life over to this Master is such a worthwhile decision! He requires everything of me - more than I am capable of giving many times - but he offers so much, and a beautiful afternoon to plant a tree with my husband, besides. Coming after that week, and what he was showing me in Psalm 16 the night before, I know this day was a deliberate gift from him.

This photo was taken in July 2016 because the photos we had of us actually planting the tree have gone AWOL. Gone. Done for. Without a trace!!! That's only one small reason that this post was long in coming, but since a post, especially one this long, isn't as nice without pictures, I thought it would be worth ending with a photo for those of you who found this obscure post AND took the time to read it through to the end.

***And now, nearly a year later, I have finally found the photos we took on that lovely November day!

Boys (Owen in the center) digging the hole for the tree.

Girls playing "cooking" with random yard items.

Me and Matt planting the tree!

Reuben with his fire.

Krassi in his wagon.

Weight gain

Krassi had an appointment at the specialty health care clinic today, so we got another "official" weight on him, annnnnd......he's up to 42 pounds, 5 ounces!!!

I *knew* he was getting beefier. ;) (If you can call an 11.5 year old "beefy" at 42+ pounds!)

Small details

With the colder weather outside, we're turning again to indoor tasks. It's been nice that it's been a milder fall because that means that we can use messy tools like the table saw outside!

Last week we started working on finishing the stairs down to the entry landing. Please note the wood on the top tread (the riser is also in for that one) and the stringer along the north side.

That was it for that night, but then last night we were able to get the stringer on the other side of the stair put in, and somehow in between days, Matt managed to put the nosing on that first tread, too!

Putting the south stringer in place meant that we could finally add base trim around the tiny bit of wall between the stair runs, so we went from this...

 ...to this...

...which looks a whole lot more finished.

And that was that for that night, so maybe in a week or so we'll get another stab at it. The nice thing is that now that the stringers are both in place, risers and treads are something Matt can do single-handedly, so he doesn't have to wait for a time when I'm available to help.

A small surprise

Our boy continues to surprise us.

A bit of background - Krassi does not enjoy car rides. He's fine for little things around town, but once we get to a 40 minute or longer drive it is Not. Good.

This past weekend we took a trip a little over an hour away to a friend's hobby farm. We got some fussing out of Krassi on the way there, but to only be there for a few hours and turn around and go home past his bedtime was more than he was going to put up with, and he was letting us know it!

Imagine our surprise when we got off the interstate highway onto the highway that takes us to our house - maybe a mile from home, and on a route he takes both coming home from school in the bus and coming home from the therapy center we're at twice a week - he stopped crying, just like that!! We both thought, no way he recognizes where we are - he has such a hard time looking at things as it is, and anyway, it's dark out. But we didn't hear any more fussing, and I was watching him, and he was definitely looking out the window of the van. As we turned onto the frontage road where we live, his smile got bigger, and turned to little bits of laughter as we turned into our driveway.

I really think he recognized the familiar road and knew that we really were close to his home!

Two years followup

Here's the photo of Krassi with Daddy right before bed on the second anniversary of his arrival HOME.

I always love that boy's smile. ;)

There have been a few nights this week when Matt's been gone at bedtime, so I've taken over what's become his nightly routine with Krassimir. How indescribably precious to cradle this boy in my arms, and sing him his bedtime song ("Jesus Loves Me" modified slightly: Jesus loves you, this I know for the Bible tells me so...Krassi is weak, but Jesus is strong) and while I'm singing, our noses just inches away from each other, he's smiling the whole time, his eyes are not necessarily locked on mine, but they're not trying desperately to hide, and his hand is not trying anything to push me away or to come in between him and me.

Especially this week, getting to do this a few times, and remembering all the events of two years ago, it is such a joy to not have him fall apart sobbing before this short routine is done.

And, even better, once I'm done singing, I ask him if he's ready, and he starts giggling - he knows what comes next! I hold him over his bed and pillow, count, "One, two, three!" and *drop* him down onto the bed. Uncontrollable laughter! One more snuggle and a kiss, and he's good for the night.

A post for Reuben

Life with a child whose world revolves around a different axis than a "typical" child brings with it challenges that are hard to articulate, but at the same time makes relatively simple accomplishments major reasons for celebration.

Take last week, when Matt was busy one day laying 17 rolls of sod left over from the new house next door. Reuben had been having a rougher afternoon inside involving lots of shrieking, banging himself in the jaw, and asking for (but not really wanting) a nap. He has so very few activities that capture his interest, so I made a last-ditch effort to help him find a way to play by bringing him down to Daddy's office with some match box cars (almost every window in our house has a few match box cars lined up on the sill!) so he could watch Daddy out the window.

Not more than a few minutes later he was up in the kitchen by me telling me via his own made-up sign that he uses for "outside" that he wanted to go out. He actually sat down and put on his own shoes to get ready to go! I helped him get out the door, and as I grabbed my own shoes to help him go find Daddy, he had already gone into the garage to look for his little shovel. We walked around and found Daddy filling the wheelbarrow with compost from our compost pile to spread on top of the not-so-great soil left over from excavating around the addition.

Oh, what a happy boy! Trowel in hand, he "helped" daddy fill up that wheelbarrow, and then walked back to the opposite side of the yard to dump and spread it. Matt told me later that he worked steadily the whole time, not necessarily putting dirt where Matt wanted it, and sometimes even shoveling up what Matt had already spread, but for him to stick with a task for that duration of time, and not even one of his go-to tasks, was amazing to see.

Reuben brain thrives on cycles - simple, repeated circuits. This ended up being perfect. Fill the barrow, wheel it across the yard, dump it, spread it, repeat.

Getting to ride back to the compost pile in the wheelbarrow doesn't hurt, either!

Reuben happily worked out there with Daddy for around two hours.

Matt commented that sod on the outside is like putting in the trim on the inside of a construction project! It really makes that little area outside of his office window look finished. And to get to do this work with Reuben made for a very nice day.

I suppose it's also worth mentioning that Reuben is my only child who is not afraid to pick up worms. ;) Even Daddy doesn't really prefer to touch worms, given the choice, but Reuben isn't phased at all by it, and when he's out in the dirt, will happily pick up every one he finds.

This isn't the best photo, but if you know what you're looking for, there's the worm!

This was a few weeks ago while we were digging potatoes. He's giving that worm quite the stretch, there, but as far as we know, the worm made it.

Look what my boy can do/ Two Years Home

As we're quickly approaching two years we celebrate TODAY that it's been two years since Krassi came home, I'm doing more reflecting on how he's grown and changed.

It's funny sometimes how some of his progress seems so unnoticeable to me until someone else points it out, and then there are some things that seem like such big deals to me that may appear rather insignificant.

With that, check out what Krassi was doing a few days ago!

Can you figure out yet what he's doing that I'm so impressed with??

Check out which hand he's using to hold the cake pan insert that he loves to play with...it's his LEFT hand!

When Krassi came home, his left hand was essentially unusable - often held in a fist, and generally not an asset to him.

One of Krassi's referral photos (he was about 8 years old in this photo).

A sweet smiley one we received after we committed to adopting him (so he's about 8.5  years), but before we'd met him - but look at that left hand and arm again!

On our pick up trip...

A few weeks home...the right hand is busy working, and the left is mostly just tight.

 So, now look at him here again - he's got a good solid grip using his thumb in an appropriate way on that cylinder!! I think of the hours of time that have gone into stretching that left arm, doing reflex exercises on both hands to encourage proper grip. And that smile - I love that smile! - Krassi just eats up verbal praise. It is so easy to bring a smile to this sweet boy's face, and it's so amazing to watch how hard he will work to earn that affirmation.

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Looking through old photos to find a few to illustrate his old grip brought me across a few other early ones that are fresh in our minds as we celebrate this two-year milestone.

These first two were of the very first moments that we met back in March, 2013. This poor little boy was absolutely terrified.

 What a joy it was even over the course of that week to see him begin to adjust to having us around. What a difference just a few days made.

And here are a few from our pick up trip...

Krassi and Mom on the balcony of our hotel - he looks so pale and so passive in this photo.

Out on a walk stopping to eat. There's that little left-handed fist again.

Back in the hotel - what a tiny guy. I remember his thighs being no thicker than his skin and bone calves, but to see him now, he's still skinny and small and still severely underweight for his age, but there's meat on those thighs these days!

This is within days of coming home.

We took a photo of him before bed tonight, but it's still on the camera. I'll get it up within the next few days.

We're so glad this little guy's part of our family!

{here's a quick link to the update post from a year ago}

Now THAT'S devotion

If only there were more of us who were this desperate for our Bible!

(See it up there, on top of the jar just to the left of the Cheerios? It's drying after some serious repair work to the binding.)

Smart little boy got the stool all by himself, and realized he STILL wasn't tall enough, so turned around asking, "Beh, beh?" ("Help, help?")

(I have to laugh looking at a photograph of our refrigerator which is empty as high as Krassi can reach from the floor, and then crazy full above that line!)

4H

Here's another "what we're up to" post that's somewhat out of date. Last fall neighbors of ours introduced us to their local 4H club, and we decided it sounded like a good fit - relatively low impact commitment (one meeting per month), and a good reason to pursue and stick with individual interests, and to potentially explore other things we might not have reason to do otherwise.

We were also very interested in the idea of a club where many ages and thus abilities are all together in one club. Anything that's set up such that kindergarteners and high school seniors are together sounds like a good venue for someone like Krassimir to be a part of something beyond himself, beyond school or his therapy center. There aren't many opportunities for a tiny eleven year old (ten at the time), enrolled as a kindergartener, with the developmental prowess of a one year old to belong to something outside of his family or his church. We know he recognizes and enjoys familiar people, and were excited both by the chance for him to get to know other people, but also for other people to know him.

The year went quite well. Parents are usually at the club meetings, and many of the parents would make sure to stop and say hi to Krassi every month, but there were a number of the kids that did, too, as the year went on.

The culmination of the year, however, was in the month or so leading up to the county fair. Every year our club participates in the "Share the Fun" event, which is a six minute skit written and performed by the club members. Owen and Leah expressed interest, and had been busily going to twice-weekly practices to memorize the songs and dances (they did a mini version of Oklahoma!), when a few weeks before the fair, some of the older club members brainstormed a way for Krassimir to be part of the skit, too, and invited him to be part of it.

I truly do not know how much Krassi understood about any of the whole deal, but I know *I* was thrilled that they had thought about him and found a way for him to take an active role in the club's six minutes in the spotlight. Krassi got to wear a plaid farmer shirt, a straw hat (which he of course didn't wear), and ride in his wagon modified to look like a miniature covered wagon. Rose pulled him up onto the stage, and at the end, Joe and Georgia dropped the tin cans tied up in the back, flipped the "Just Married" sign, and trundled on down the ramp. Not only did Krassi receive a ribbon for participating, but the club also was awarded "Reserve Champion" (which, for those of you who, like me, know/knew nothing about 4H is essentially a second-best of show award.)

These photos of the skit aren't great because they're just screen shots from a video, but it gives you the idea...There's Krassi in the red-covered-wagon on the left just above the piano music, and Leah and Owen square dancing (pink dress/white bonnet and overalls/straw hat).

Krassi's big moment came at the end of the skit.

This year we're excited to be signing him up again, and Reuben, too. (And Owen and Leah.)

Krassimir's 4H project - hand painted note cards. (I had taken a photo of them on display, but was having issues with my camera, so had to re-take at home after the fair.)

Ha! One other fun memory from the Fair experience - as we were signing in on the day when the projects are judged and left to be displayed, not really sure what we were doing, the first thing we hear is someone saying, "Hi, Krassi!" It was one of his paras from school - not a peer, but still, how delightful to have someone know this boy, and with the four of us there, that Krassi would be the one who knew someone made me smile.

Leah designed and sewed a beautiful farm quilt. There wasn't room for them to hang it so it was all visible, but they made sure to hang it so that much of it was visible!

Leah also entered the framed drawing above her head of three birds adapted from a photograph. As a "Cloverbud" (K-2nd grade), her and Krassi's ribbons were not weighted at all - they simply received a ribbon for participating.

Owen's remote control truck with trailer and mini-car. (Again, if you don't know 4H - the projects are all judged individually, meaning they aren't judged in comparison to other projects, partly because each project can be so very different from every other project. Instead, each child is judged almost against themselves, and in their ability to dialogue intelligently with the judge about what they set out to do, how they accomplished it, and what they learned through the process. A blue ribbon is awarded to projects that show a superior level of thoroughness and understanding. Red is for an adequate job, and white essentially shows that you showed up. After each project has been given its individual ribbon, and all the kids have left, the judges discuss among themselves and in each project area select the projects that were truly outstanding compared to the others, and those are awarded an Award of Excellence, Reserve Champion, or Champion ribbon.)

Owen was awfully excited to come back to the fair on Monday and find that his "how to choose the right lawnmower" presentation board had been given Reserve Champion.

Plodding along on the house

After getting Matt's mom moved in just over a year ago, and getting the living room livable by last Christmas, all work on finishing the addition has really slowed to a crawl. But now that we're back in the school routine, and some of Matt's deadlines have eased up a bit, we're moving again (slowly) over the last few weeks.

We now have a (nearly - missing some face nails on the two end boards) finished exterior deck entrance at the door in and out of the addition near Matt's office.

This photo's from back in July. I tell you, there's nothing that warms the heart like looking out the door and seeing your husband hard at work digging a DEEP hole for the footing for the deck that's been waiting for a long time to be built!

Then, after living with just a big hold outside of that door for months, and then weeks with just the deck frame, we finally had a day in September to put on the deck boards. Love how Reuben is helping. iPad at the ready and thumb in mouth. Sometimes we just do what we have to do to keep him safely occupied while we get the work done!

Getting closer - the metal grate provides a place for people to scrape their shoes off before getting to the door.

There! Done! And doesn't it look nice, too, to have the underside of the flat roof and the few battens around the door painted? (Thanks to my mom who did that in the days before Matt and I went away for our anniversary trip.)

It's kind of funny what a destination that little bit of deck has become. Play food gets cooked out there, home school work gets done out there - it's the place to be!

 Matt and I have also gotten back into our wall-building routine from the spring - when both of the little boys are at school is a good time for him and me to get some time to work together without constant interruptions. With that, we now have the limestone walls all the way done. (Ha - as I was skimming over past posts I realized I've done a very poor job of keeping updated photos of that on the blog! I'll have to find a few to share here...)

May 2015: we decided the wall was going to be higher than we wanted, especially on the east end, so are making it two-tiered, so it's safer for kids who fall over it, as well as allowing more light to make it down into the lower level play room.

July 2015: a beautiful day to be outside - Krassi's in the wagon, Barb's out pulling weeds out of the grass, the girls are playing house, and Reuben's been in and out with matchbox cars. (Owen's most likely putting miles on his bike or soccer ball at this moment!)

That particular day ended up being the day we got all of the wall on the south side of the house completed. It wraps around to the west, but until we were able to get the entry deck in, we couldn't fully finish the wall.

We also just this week were able to go out behind the addition and finish the small bit of limestone wall we put in behind the berm created by the excavation for the addition and our vegetable garden. We had started this WAY back in the spring to get a feel for how the wall-building worked before starting on the real ones in front of the house, and now that those are done, it was time to get back to that one and get it finished up.

Real men can build limestone walls single-handed with a little pink girly in the other arm!

Hey, cutie!

By the end of the morning, Evania was helping, too, taking her little shim of rock in and out of the chinks in between the bigger rocks.