Beyond the label

I've put off writing this post for two weeks now, but it's something that I think is worth sharing. Our family now has two of our five children labeled as having "special needs." And they do. (For that matter, our "normal" children also have some pretty unique needs, but that's another topic!) But something happened two weeks ago that brought a fresh awareness to my mind of how limited the labels and categories that are used really are. I don't believe that when God creates each one of us that he labels us "normal" or "special needs."

Matt and I have at various times in our life together mused over what it means that humankind is created in the image of God. I don't at all think that he and I have that all figured out, but I do think that part of what that means is that in some way, each one of us reflects a little bit of what God is like, and that that reflection is completely independent of what we know or believe about God.

[A side note - one night in particular that sticks out to me on this topic happened when Leah was 3 or 4 and Owen was 5 or 6. I was commenting to Matt about the incredible sense of care and compassion that Leah has towards others, and her wonderful capacity for forgiveness, and how those qualities made me think that that's part of what it means for her to be made in God's image. Then, to be fair, I asked Matt what he thought about Owen (who was going through quite a snarky year at the time). Matt paused thoughtfully for a moment, and came back with this: "Well, Owen thinks he's king of the universe!" Well, yes, but not quite what I was looking for!]

Back to my story - I'm not much of a crier, but there's nothing like being pregnant in the midst of a highly emotional transition in your family to create a ripe environment for tears. I think I've cried more from mid-November to mid-December than I have in the five years previous, and I don't know that I'm exaggerating. Two weeks ago yesterday I was silently crying in bed in the morning shortly before it was time to get up and get going for the day. Both Matt and Reuben were in the bed, too (which is typical. Reuben's been sleeping much later than he has for most of his life over the last few months, but he's still up before any of the rest of us are ready to get going for the day, so if he comes in with us, we can squeeze in a little more restful time.) Reuben noticed right away that I was crying. He is, and always has been, highly sensitive to other people's emotions.

Hey, cutie. ;) This photo of Reuben (which has nothing to do with this post except that it's a photo of Reuben!) is noteworthy because he is sitting down to color!!! And he sat long enough to color every box!!! This is nearly unheard of for Reuben. (Kelsey, if you read this, I think this is in part evidence of your work with him paying off!!)

I remember a time visiting my parents' church when Reuben was about 3 months old (back when he was still a "normal" child for all anyone knew) and being struck by how very socially aware he was. He was happily being held by many different people, and was attending to and responding to their conversation with him and others in a way that seemed way beyond his years (months?) I wasn't the only one to notice this, and in the months following, noticed in many ways that Reuben seemed to have a very high emotional IQ. In following years this developed in a not-so-pleasant way as Reuben had a tendency to go over and smack any of his siblings who were crying, regardless of the reason for their tears. Looking back now, I believe that response was simply because his sympathetic connection to other's emotions was so much stronger than it is for most of us that he simply could not handle hearing their distress.

He has recently been learning more empathetic ways of dealing with others' emotions, and on the morning when I was crying, he noticed right away (Matt was oblivious. Remember, these were silent tears!) Reuben, who for those of you who don't know him is essentially non-verbal, came right next to me, gently touched my face, and made his little sad face with an, "ohhhh." Matt was still oblivious (and though, at the moment, that irked me, and is the reason why I knew I couldn't post about this that night! looking back, I think it says more about Reuben's emotional intuition than it does anything negative about Matt.) That was the moment when Matt got up, walked over to the door, and said, "I should really go down and get the oatmeal started." Reuben stayed by me for another minute, and then climbed down off the bed, went over to his bookshelf, and pulled down a book that he likes entitled "Just the way I am: God's good design in disability." He plopped it onto the bed and flipped through the pages until he came to the one with a photo of a sad boy. He pointed to the boy, made his sad face, and said, "ohhhh." I looked at the text on the opposite page.

Even when I am sad and hurting, God is with me.

"Fear not, for I am with you. Be not dismayed. For I am your God, I will strengthen you, I will help you, I will uphold you with my righteous right hand." Isaiah 41:10  

Oof. There goes all the wind of my self-pity sails. I sat there in a mix of emotions between dwelling on the very real presence of God, and awe at the incredible clarity with which my cognitively delayed four year old was able to read my emotions and attend to them in a very direct manner.

~~~

After writing most of this last night, we saw some new-ish friends this morning who also have a child with CP with some pretty significant delays. My friend was sharing with me some of the simple things that bring incredible joy to her six-year-old daughter - things that most of us are completely oblivious to like ceiling fans, or certain pavement rumble patterns while driving, or shades going up and down. She commented that she wonders sometimes if it's less that her daughter is hyper-sensitive to these sorts of things and more that those of us who are "normal" actually have a dulled ability to experience pleasure in the most simple, mundane things of life. Like Matt being oblivious to my tears, am I oblivious to things around me that I would benefit from having a heightened awareness of?

These two examples make it so evident to me that there is so much more to a person than we can measure. A person's value comes from something much deeper than what they are able to achieve or contribute to society. Each one of us is "fearfully and wonderfully made." And perhaps, the more time we who are "normal" spend with these people we would like to classify as having "special needs" we may realize that, yes, there are some needs that are glaringly obvious and above and beyond what is "normal" but hopefully will also have eyes to see beyond that to the ways that these people are also a reflection of what God is like, made in His image, and perhaps in ways that we do not possess ourselves.

And thank you, my Reuben, for caring for your mommy and speaking the truth to me without needing to be able to use any words.

Krassi smiles

After sharing about how photos only tell an incomplete story, here is a post of photos. ;) And I think that photos do have a lot to communicate. For instance, this series was taken "as they come" and not waiting for the perfect moment. Guess who was a pretty happy boy this afternoon!!

Drinking liquids is a challenge for this boy. We've tried it on and off since the first week we were in Sofia, with less than impressive results. I know practice is likely the best solution to this problem, but meal time is often crazy enough around here that adding one more trick to the mix is a little daunting.

Krassi and I (and Leah who came just to be with us) met with a nutritionist yesterday. I had mixed feelings coming to this appointment - would it be worth it? I've gotten many helpful tidbits on what to feed Krassi from other adoptive families from his orphanage who are looking at similar situations of very underweight children, and have been routinely adding olive oil to his supper blend, peanut butter to his yogurt/pediasure, and whole-fat dairy all around. He even got to finish up the rest of the container of heavy cream that I didn't use up at Thanksgiving! I also wasn't sure what she would think about a child as underweight as Krassimir is. But she took it all very much in stride, had useful questions to ask me, and sent me home with a number of helpful ideas to act on that work within the context of the way our life runs. One of her concerns is that he get enough fluids in his diet, and she suggested that I try giving him a mid-morning or mid-afternoon (or before bed!) snack of liquid calories. (Her suggestion here is whole milk reinforced with powdered milk. So not purely liquid, but substance in a liquid form.) Being liquid, it will not fill him up the same way solid foods do - in fact, this is why we dropped the mid-afternoon snack he came home eating - he just wouldn't eat anything for supper after having a snack! And, even more important long term, it gives me and him a chance to practice using a cup at a time of day when I'm not also juggling four other children, only two of whom are mostly independent eaters!

So today while I was making some adjustments to the wheelchair on loan to us I gave Krassi a trial fit and got out the bib and the cup.

Wow, did we make a mess!

But I also think some of the stuff got into him (this was a blend of whole milk and a bit of leftover (non-alcoholic) eggnog with just a touch of fresh nutmeg for fun.) ;) Certainly not the 4 ounces that the nutritionist suggested I aim for in between meals - probably more like half of an ounce! But he got some practice, and at least a little bit of "liquid calories."

And we definitely had a good time doing it.

HEAT! and a few other details

Well, we didn't have heat in time for Christmas, but we have it before the new year! I just climbed back in through the window from the addition where Matt gave me a quick tour of the up and running system after the mechanical contractor was here this morning making the final connections for the gas boiler.

I am so excited about this for many reasons. One is obviously that every thing that gets completed means we're that much closer to having the work over there done. Another is that now that there is heat out there, and in particular, heated floors, the possibility of bringing the kids over there with us (including Krassi who plays on the floor) and me being able to help Matt again an option. Right now it's still quite a mess with cellulose dust everywhere out there, but an hour with the shop vac would fix that.

Matt also realized at the end of yesterday that he hasn't run phone line yet. ;) Oops! He was glad that he remembered that before getting all of the walls closed up. That will be a relatively simple job - just has to be done, and of course, makes him wonder if there are other similar things that he's not thinking of! (For what it's worth, I have a feeling that there are very few things he hasn't thought of with this project!)

Another bit of very exciting news related to the addition came from the city inspector last week. Matt had him here for something and asked if there was any way that we could get partial occupancy for the upper level before the remainder of the addition was finished, thus allowing Matt's mom to move in here sooner rather than later. His response? Because this project falls into the "addition/remodeling" category and not "new construction" there is no need for us ever to get a certificate of occupancy - we can begin using the space as regular living space whenever we want to! Because of the way this addition attaches to our current space, and the fact that it's so large in comparison to our existing part of the house it's always *felt* more like new construction to us. So this is fantastic news: we get to decide when it's done enough for her! We already know we didn't meet our goal of having her here by Christmas, and I also don't think that my secondary goal of the end of January is going to be feasible, either (I'm still hoping, but I'm pretty sure Matt doesn't think that's possible! And he knows better than I do since he's much more involved with what's going on out there and what still needs to be done.) But however it goes, we're looking at sooner rather than later...whatever that ends up meaning.

I keep reminding Matt that we have now less than 15 weeks before Baby arrives. ;) Give or take.

***
Just remembered that another important piece happened Christmas morning. Because my side of the family celebrated on Christmas Eve, and Matt's side won't get together until New Year's Day, Matt and my dad had time to...install the bathtub! on Christmas morning before they had to leave for the five hour drive back home.

Proud little boy/ what a photo can tell you

Look who's so proud of how straight and tall he's sitting all by himself!

Duplo bins have proven to be a great size for Krassi to work on this skill. The height is right to give him a good solid 90 degree angle at his knees, and there's room for him to prop with his hands on either side of his little bottom. He has to work SO hard to do this, but he is so very proud of himself whenever he does one of these "big boy" sorts of things.

I look at that photo, too, and realize how very deceptive a photo can be. It's easy to paint a rosy picture of "real" life with photos. I mean, seriously, how could life with this boy be anything but smiles and giggles and delight, right? I tend to not take as many photos of the not-so-pleasant moments. ;) Partly, of course, because I'm usually pretty occupied during those moments, but also because those are not the moments I choose to remember.

There's a video of before and after photos of children from Krassi's orphanage that simply cycles one of the child's referral photos followed by a photo taken (and shared with permission) of the child after they are home with their adoptive families. One of the biggest differences (and I use the word "one" on purpose, because it's definitely not the only significant difference, if you're interested in checking it out!) is that in the "after" photo the child is almost always smiling.

Everyone looks better when they're smiling - just look in a mirror and test it out if you have any doubts! But as I thought about it, a few things came to my mind. First of all, the photo of the child (my child, our child) that you see above is a photo of a child who was described in his referral paperwork as one who "rarely smiled." I have to admit that with all of the other scary things that were in that document, the simple fact that he rarely smiled was one of the scariest things for me. As I look at my beaming son, I am reminded again how little a two page document can tell you about who a person is.

A second, and no less significant thing, though, is that all of the "after" photos are taken by that child's family. I could just as easily have shared with you this photo:

If you ignore the fact that there's a smiling mommy next to that boy, you'd get a very different read on him. Part of being part of a family is that your mommy and daddy are willing to take the time to take a bunch of photos to get that good one. ;) And once they get the good one, that's the one they want to share with others. "Look at my son! This is how I see him when I look at him. Isn't he delightful? Does he fill your heart with joy the way he does mine?"

So I have to leave you with this one again.

Because this is the little boy that we are so glad is our oldest son.



[For those of you who are interested, a website has recently been created to help benefit the children who are still living at the Pleven orphanage. The current director has a really neat vision for the future, and also good news is that the former director, after a two-year process of being removed from her position and then appealing that decision, has had her case heard at a higher level court which has determined that she will not EVER be given the chance to get that job back. She is not allowed to appeal the decision any further!!!

Here is the link: http://www.plevenproject.org/ and here is the page where you can see the video of photos I was referring to above: http://www.plevenproject.org/the-present.html ]

Merry Christmas!

Our first whole-family photo with our (current) whole family!

Matt with "hair"

The pressure held. ;) Both the gas line and Matt's final radiant tubing run passed their inspections, as did whatever it was up in the attic space that needed to be inspected before the cellulose could be blown in to insulate the attic.

Earlier this week Matt took all the seats out of our mini-van and made two trips to Menards to pick up as many of the 19 pound bags of cellulose insulation that he could fit. With 44 on the first run and 48 on the second, we figured we had plenty to do the attics. Those bags filled the office! And Owen and Leah had a blast building tunnels and forts with them in the day in between when we got them and when we got to use them.

Thursday was the big day. Our friend/pastor from church had offered a long time ago to fill the hopper for Matt while Matt did the actual placing of the insulation from the tube on the end of the blower.

Hi Joel!!

Joel's two children (same age as Leah and Reuben) came along with him and played with Owen and Leah. In between hefting the 19 pound bags up 3 half-flights of stairs to keep Joel supplied so he could keep Matt in business, the kids continued to build an ever-changing (and shrinking) fort. Seeing this made me want to be a kid again! The bags of cellulose are roughly block shaped, so are great for building, yet are light enough that the kids can move them themselves. They're slightly squishy, so have a bit of bounce to them, and yet the stuff is packed tightly enough inside that if a bag were to get a hole in it, it wouldn't make an instant mess. Besides, the whole addition (and creeping into the main house!) was a mess of dust from the job anyway...It's hard to imagine something better than this!

And in between the play, we tallied that Owen probably dragged well over 1000 pounds of insulation up those stairs, and Leah and Jamie (both age six) pulled their fair share as well.

Mid-way through the day, Matt popped in to ask me something.

"Hi, Matt! So that's what you look like with hair!" (Yes, gray hair, but still, it was funny seeing him with fuzz all over his head. I can joke about this because he knows that I really really like his bald head - I think it's because it reminds me of my dad whom I love and respect very much! Regardless, I much prefer the "no hair" look to the "gray fuzz" look!)

Turns out they were going through the insulation faster than he'd anticipated, and needed me to run to Menards to pick up more. Hmm. Okay - Reu's napping - I can put Leah on the video monitor to keep an eye on him, and if Matt only takes out the back seats of the van and leaves the middle seats, I can bring Rinnah and Krassi with me. So off we went, and picked up twenty bags, getting back to the house with only a five-minute lag in work time for the men. They sent me off again for another load, and I got 25 that time, and by the end of the day, they had 15 or so left unused (which will go in the main level inner walls eventually). Phew. We're still getting meals from people at church on a semi-regular schedule, and I was so glad that this was a day when I had a meal coming! That made spending nearly two hours running back and forth to Menards loading and unloading insulation that much more possible.

Yesterday (Friday), the mechanical contractor we've hired to handle the natural gas connections was back making a few more connections (running the line for the gas fireplace and installing the boiler for the radiant heat) which meant that today (Matt's birthday!) he could spend his day getting all of the tubing from the various radiant heating zones hooked up to the circulating panels and electrical connections run to the various thermostat locations. It's still possible that we'll have heat in the addition by Christmas if the mechanical contractor can make it back here early next week. When Matt came in today to get ready for supper I noticed he was still in his pajamas, which he'd worn underneath his Carhartt's all day. Not quite the same as actually lounging around in your pjs all day, but still not a bad way to spend your birthday. ;)

Matt's got a story from the insulating that I think I'll have him share in his own words. [Handing the keyboard off to Matt...]

When I was filling out the paperwork for the insulation blower, one of the questions was if I wanted to pay an additional $3.50 for a damage waiver.  Basically a form of insurance in case something were to break while I was using the equipment, I would not have to pay to have it repaired.  I thought momentarily..."$3.50 is not that bad," but then the next thought was "God is my damage waiver."  I don't need to put my confidence in an "insurance" scheme when I can trust that God will either take care of it or will provide what I need to cover it if something does get damaged.  So I declined the offer.

Driving back home with the blower on the trailer behind Chad's truck, I kept glancing in the mirror to make sure it was still there.  When we got back to the house, Joel and Kyle were both here waiting to help me carry the blower up the stairs.  Joel and I were able to get it down the stairs at the end of the day by ourselves, but it was nice having a third person to get it all the way up to the top floor.  After some wrestling with tangled cords, we had it ready to go and hit the switch and nothing happened.  Now what.  Oh yes, read the directions.  This must happen a lot because the first thing to do when it is not working is to make sure the emergency shut-off is not pushed in.  It was and as soon as we got it pulled out, we were ready to go.

I climbed into the attic and we got started.  It was going way slower than I remember it going other times I had done this.  We figured out it was because we had the blower motor going, but did not have the agitator going.  Once we got that figured out we were off and running.  Periodically Joel or I would stop the blower if we needed to move or grab another bag of insulation.  Not a big deal.  However, one time I heard a clank and then Joel muffled voice saying something as the blower cut out.  Turns out he had dropped the utility knife he had been using to slice open the bags into the hopper.  So with everything powered off, we start digging through the hopper feeling around for the knife.  No luck and the insulation was low enough in the hopper that in addition to feeling around we could also see that it was not there.  We pulled off the hose and checked to see if we could see it at the end of the hose or in the bottom of the blower...nothing.

There was a reason why I did not purchase the damage waiver and now I was going to find out how good my reasoning was.  I looked at Joel and said I guess we just have to turn it on and see what happens.  Either it will work or it is going to completely jam.  I turned it on and after about 5 seconds it was going fine, so I turned it back off so we could re-connect the hose.  When I looked in the hopper, there was the utility knife laying on the top of the fan cylinder in the bottom of the hopper.  I KNOW it was not there before we did the test run because both Joel and I had looked with our eyes and I had run my hands back and forth over the 3 sections of the fan cylinder that were accessible from the hopper.  Somehow it had been in the fan cylinder, but down instead of up and did get pushed toward the opening where it would have jammed, but just so happened to stop out in the open where we could retrieve it.  The rest of the day was uneventful except for having all of the attic spaces insulated!

Tonight I was reading in Psalms, just picking up where I had left off the day before, and I was in Psalm 33.  This is how the end reads (verses 18-22):

Behold, the eye of the Lord is on those who fear him,
On those who hope for his lovingkindness,
To deliver their soul from death
And to keep them alive in famine.
Our soul waits for the Lord;
He is our help and our shield.
For our heart rejoices in Him,
Because we trust in His holy name.
Let Your lovingkindness, O Lord, be upon us,
According as we have hoped in You.

Krassi Mir

Rinnah has really connected with Krassi, probably spending more direct time interacting with him than any of the other kids. She regularly gets down next to him to talk to him, or share a toy with him (or take a toy from him, though she's learned how to offer him something new in exchange and wait for him to drop the one she's looking for before taking it!) It's fun to hear her say his name. Usually she just calls him Krassi, but sometimes she pulls out the whole Krassi Mir, separating the two parts of his name so distinctly that it sounds like she's using a first and middle name. ;)

She has made herself my self-designated tooth-brushing and flossing helper. She sits near Krassi saying things like, "It's okay, buddy," or "You're doing great, Krassi!" or "It's okay, I am here with you, Krassi Mir." She waits patiently until I'm done with the flosser, and then every night puts it into the garbage for me and heads off to Daddy to get her own teeth brushed while I finish brushing Krassi's.

The pressure is on

That is the pressure tests.  The gas line from the meter into the house was installed today and that was pressurized and is awaiting inspection.  Then this evening, Andrea and I finished up a last couple connections on the last radiant heat loop and I got that under pressure as well so we can have that inspected.  If both of those items hold pressure and pass inspection, there is a chance that there could be heat in the addition by Christmas.

Radiant panels and manifolds are on the "finished" wall.  That is the first room to have it final wall finish installed!  The copper tube looping down is the gas line.  As always, when Andrea and I are both in the addition, the iPad is nearby with Reuben on the video monitor so we can watch for seizures.  There are also two outlets in place...more later.

Yesterday two friends were over for a couple hours to help me get the last pieces of sheetrock in place so I can insulated the attic spaces.  As well as get plywood up on the wall of the mechanical room so that we could mount the radiant heat panels and manifolds on the wall to be ready for the gas line and boiler installation. 

It's a whole lot easier to hang big pieces of sheetrock on the ceiling when you've got more than one, or even two, guys!

 Today I also had some help from a friend getting the fabric up on a lot of the exterior walls in preparation for blowing the inner layer of cellulose insulation into the walls.  That won't happen for a bit yet, as I have to finish the rough-in on all my plumbing and mechanical before I can close up all those walls, but it is another step closer.

The walls are starting to turn white.  Not sheetrock yet, just the breathable fabric that holds the blown-in cellulose in place while letting the air escape back into the room.

For the last week, Owen has been constantly asking if he can help hang drywall with his screw gun.  While he is most certainly willing, there have only been a few locations where he has been able to help me because most of the work at this point is overhead and up high.  However, today he was able to staple the fabric to the studs.  One staple every 1 to 1.5 inches...that is a lot of staples.

As you can see, he was a very happy worker!  He is such a wonderful worker and it able to do a lot of valuable work that saves me time and gets real work done.  It was really fun to be able to have something like this for him to work on rather than turning down his offers for help and seeing the disappointment on his face.

Today was also the first day I flipped the breaker for the sub-panel in the addition.  The insulation blower requires two plug-ins for two motors and I figured it would be best to have this running on different circuits and I will also need some lighting up in the attic where I'll be working as well.  As such, I put in the receptacles for the mechanical equipment and the main panel plug so I have two circuits available within the 50' reach of the cords that come with the blower.  No sparks and three working outlets...what a good feeling that was.  I had been a little nervous about actually flipping that switch!

Now that the panel is live, it was time to put the panel cover on. (Andrea gets a kick out of the "season's greetings" bag covering the end of the flexible duct hanging to my right.)

Two quick photos

Love this shot of my six year old and my nine year old laying around in jammies this morning.

And here's Krassi all proud of his mock-cruising (he needs to be heavily assisted by me). This was an afternoon after physical therapy, and his therapist has noted that the particular method of stretching she uses is intended not only to stretch the muscles, but also help organize (as in help him coordinate his movements), and we definitely see him able to attempt and do more after he's spent his time with her. We've been very happy with our decision (and the opportunity!) to start physical therapy with Krassi so soon after his getting home.

We're still here!

There are many things I'd love to post - work happening on the house, work on the horizon that God is providing for us, delightful moments and challenges with Krassi, Reuben falling down the stairs again (but not catching himself with his nose this time!), but somehow (ha ha!) it's not happening. I showed Matt the to-do lists that I had for yesterday and today, and the new one I've got started for tomorrow. Of the twelve items to date, I have five done and two started. ;) I'm only adding four things to tomorrow's list, which leaves me just 9 things to do and two to finish. We'll see. ;) And blogging isn't on any of those lists yet! Maybe Friday night...

But we're still here!

The first sheetrock

As Andrea mentioned in a prior post, last Sunday a friend from church (Kerry) asked how our project was going and offered to help with the sheetrock.  It looked like this Saturday (12/14) was the best bet if we wanted to get to it before Christmas.  So, a lot happened this week to get ready and then we passed our vapor barrier inspection and had the go-ahead to put on the ceilings of the upper level.  The sheetrock was supposed to be delivered by a boom truck through the window on the upper level on Friday morning when Chad could be here to help me unload it off the boom and into the house.

Thursday I get a call saying that that boom truck is broken and they won't be able to make the Friday morning delivery, but that parts are on order and they are hoping to have the truck ready again by Saturday morning.  That should still work, Kerry and [his son] Kelly were not going to get here until after lunch on Saturday.  I checked with Chad and he was still available for Saturday morning to unload.  Friday I called to see if they could give me an idea what time they would be delivering on Saturday and I was told that the truck was not going to be ready until sometime next week.  Not what I wanted to hear.  I called Kerry and told him it wasn't going to work because the truck was down and even though he and Chad both offered to pick up materials with their vehicles/trailers, I said it still wouldn't work because we would not be able to get the 12' long sheets up the stairs to the top level.  I was bummed, but resisted the temptation to despair. 

When Chad showed up for bible study Friday night I explained to him what was going on and it was at that point that Andrea suggested I call to find out if they could deliver out of a different store.  Good idea.  I called to check on that and they said the only other stores that have boom trucks were Apple Valley and Hudson and the Apple Valley store's truck was down as well and if I went from Hudson, I would have to pay for the added mileage (25 miles instead of 3 miles).  I told him was not interested in that and that I would just have to wait until the next week when their truck was working again.  Five minutes later the phone rang and it was the delivery guy calling to say that the boom truck driver was just in the store and said that the truck was in working order and they could still deliver Saturday morning, but would not know what time until the morning.  So I called Kerry back and told him the plans were back on and fortunately he and Kelly were still available. 

Friday night I was up again with Rin and then had a tough time falling back asleep as my mind was wondering how this or that was going to work the next day.  What if the windows were frozen shut and I couldn't get them open and we couldn't get the sheetrock in after all?  What if the yard was too snowy/slippery for the truck to get backed up close enough to boom the material in...what if...what if...

I found comfort in reminding myself what we had discussed during study Friday evening about how God provides for us and that we need to be seeking after and following him and not worrying about providing for ourselves.

Morning arrived and Owen and Leah shoveled out some of the snow in the yard to make way for the truck while I was out meeting with some friends for a prayer breakfast from 7 to 9.  When I got home I did a little more shoveling and then decided to check the windows to see if they were indeed frozen and yes, they were very frozen.  After some time with the hairdryer, I was able to get it to open.  Shortly after that I decided to call Chad and tell him to come over even though I had not heard when the truck was coming yet.  No ringing on his cell phone, just directly to voicemail.  So I tried his wife's cell phone.  It rang, but no answer and into voicemail.  Then my phone rings saying the truck will be at my house in 45 minutes and was that OK.  I explained I couldn't get in touch with the person who was going to help me and asked if I could get the next delivery slot, but he said it would be afternoon before they could get to me if they switched the sequence.  I told them to send the truck, trusting that somehow things would work.

I tried called Chad again and this time it rang and he answered and he was on his way.  In addition, we have a neighbor who has multiples times said to give a holler if we need a hand with something (like when he helped us cut down the large maple tree by helping to pull the guide ropes), so Andrea called him up and he said he would be able to come help with the sheet rock unloading.  Then not only did he show up, but he brought his 20 something year old son as well! 

Once again, God had it all covered, I had nothing to worry about. 

Three kids on the couch looking out the window at the boom truck.

Our neighbor standing by to help as I pull the first sheet in off the boom.

It is starting to look different up here. 

It was really nice to have four sets of hands for lifting the heavy 10' and 12' pieces over our heads.  Four people lifting, two people holding and two people fastening.

Nearly there.

By the end of the afternoon, all of the large pieces on the upper level were in place.  There are a few skinny long strips that I still need to piece in on the upper level and two nearly full sheets on the main level link roof to go and then things will be ready to blow the insulation into the roof.  It will feel so good to have insulation in that roof!

Somebody's not sleeping!

Krassi usually goes to bed around 7:30 pm, falls asleep pretty quickly, and sleeps until 7:00 am, or nearly so. We can usually tell how long he's been awake by how many covers he still has on and how warm he still is. Covers are still really not his deal, so I usually end up going back into his room when Owen goes to bed and covering him up.

It is so neat to me to see him sleeping like this - he looks so much more relaxed than he did when we first picked up him two months ago - back then he slept ram-rod straight. This is how I will often find him - the blankets are not totally off, but as much as he's able, they're shoved behind him.

And an "after" shot. We know he sleeps pretty solidly at night, because most mornings when we come down to get him and Owen up, he's still mostly covered up!

Tonight as Owen was finishing up his last things to get ready for bed (he goes to bed at 8:30), we kept hearing sounds from Krassi. Twice this week I've heard him wake up whimpering, and have spent some time with him helping him learn he's not alone, but tonight they were his silly/mischievous sounds. Sure enough, this is what we walked into the room to find:

One (very tiny) big boy wide awake and sitting up in his bed!!! This is the first time we've seen this!!

I didn't catch the most attractive moment in this one, but if you ignore the eyes and simply gauge the size of his grin, you'll get some idea of how pleased he is with himself. The big fuss and smiles we were making over him contributed, too. ;)

And here's Krassi looking inquisitively over the side of the rail at Daddy putting cushions on the floor next to the bed...just in case. I snuggled in by him for a few minutes, and then we repeated our bedtime routine (singing, and me laying him down near the wall and tucking him in (really tight this time!) and went out, shutting the door so there are no lights or sounds, and it's been sounding quieter since. ;) Silly boy!

snowy day

We're loving this weather that is above the zero mark! And, more specifically, over 10 F, which is when I'm happy to let the kids play outside.

We've pretty much decided that this will not be Krassi's year to experience snow. He has such a tremendous dislike for his Mittens, and is still so very small that he gets cold easily, so I think that will have to wait for next year. In the meantime, I'm so glad that Owen and Leah are so capable, and that Reuben has become a bit more able to understand the need to stay near them and not wander, and that Rinnah is the most self-sufficient two-year-old I've had yet, so I can let these four go out and play while I stay in with Krassi...and the dishes...and the Baby.

vapor barrier inspection

We passed another inspection today! Last Sunday someone from church who is a contractor asked if we could use help with sheetrocking - he was hoping to get a small crew of guys (probably mostly his two sons) together to help us blitz that when we were ready. Supposedly (if the boom truck at Menards gets fixed in time to deliver it tomorrow morning) they will be here tomorrow afternoon to help get the ceilings in the upstairs and the little link space (hall and laundry) up and in! That meant that Matt had to work like crazy this week to get the vapor barrier (and maybe something else) ready for an inspection today. He also pushed on the plumbing drain and vent lines so he could get an informal opinion from the inspector on those before he actually welded them together. The inspector was satisfied with those, too, so now Matt can get out the nasty purple primer and PVC glue and put those all together, do some more bits on the mechanical, and get those two inspections done soon. Once those are in place, we can RUN on lots of exciting things - sheet rock, light fixtures, tile and fixtures in the bathrooms - all of the "pretty" things! And as far as I know, we won't need any more inspections until it's ready for the final/occupancy inspection.

We're not going to make our original goal of having his mom move in by December. I'm still hoping for January. Matt's hoping it's before the baby's born. ;) Regardless, passing these milestones of inspections seems significant to me.

inspection

The electrical inspector came to try again today while Matt was out, and he just got home, went out to check...








...and...









...we passed!!

Yay!

Now to get the plumbing and mechanical rough-ins done. ;)

What is it like to be Krassi?

I think a lot about what is going on inside of Krassi as he goes about his daily life with us as his family. Eight weeks ago today I picked him up from the orphanage that was his world for the entirety of his life. Everything he knew about the world came from his experiences in that environment, and the degree of neglect that he experienced there has had, I'm sure, irreversible impacts on who he is and who he will be.

There are obviously physical implications. The lack of physical stimulation or therapy of any sort - even someone untrained to hold him upright and support his body as he learned to use his muscles with their less-than-ideal abilities - resulted in him doing this for himself by wrapping his legs and feet around each other to provide something to brace himself against as he took on life by himself. The lack of weight-bearing opportunities means that his hip sockets never formed properly, and the leg/foot wrap resulted in muscles so off-balance that his own inner thighs pulled his legs out of his improperly formed sockets. So many of the challenges that he faces with the use of his legs and mobility are more directly impacted by the severe neglect he was subjected to than by his diagnosis of cerebral palsy. Being removed from your crib only for your once-daily diaper change does not provide the necessary physical stimulation for proper development.

Krassi was severely malnourished. From what I have read, this was likely done intentionally for a variety of reasons. Less food per child means the food expenditures are lower. Children who still *look* at first glance as though they are within the birth-to-3 age range that his orphanage was intended for allow the head count of the orphanage to easily be quite high simply because the children never look old enough to "age out" so unless someone inspecting is really paying attention, it sure looks like you have a full load of babies, and your funding, based on a per child count, stays high. Children who are too weak to do much of anything are not much of a bother to care for. They stay put, they don't fight care - everything is easier this way, right? And so we end up with a little boy who at 8 years old weighs 22 pounds. And that puts Krassi as one of the larger, sturdier children. I have seen, coming out of his orphanage, a tiny 9 year old who weighed 11 pounds (and at 7 years old, weighed only 7 pounds. Even Owen, my smallest baby, weighed 7-10 at birth!!!), children in their teens who weighed less than 20 pounds, and even, a good solid year after better care with the new director, a six year old wearing size 6-9 month footies, and a 9 year old weighing 18 pounds (these two were the ones who had families visiting for the first time the same week we were there with Krassi back in March.)

We found out this spring that our Rinnah (now almost 2 1/2 years old) is completely, or nearly completely lactose intolerant. Suddenly many things about her made sense. She, like Leah, was 9 pounds at birth, but while most babies double their birth-weight by 3-4 months (Leah did earlier than that!), Rinnah didn't fully double her weight until she was nearly 10 months old. She was terribly constipated as a purely breast-fed baby, and it only improved slightly with the introduction of solid foods. She was not a very smiley baby, though very intense, and was showing signs of some mild developmental delays. She was receiving services through the birth-to-3 program in our area (partly because it was convenient, because at that time someone was coming almost weekly to work with Reuben anyway), and after we got Reuben's genetic diagnosis in early 2012, his neurologist thought it made sense to check Rinnah as well, even though Reu's syndrome is very rare, and of the 70 known cases, only two of those were connected genetically since it is a non-hereditary condition. But she came back with no significant abnormalities (one quirk that she shares with Matt on her 18th chromosome) so no answers. But with the suggestion this past spring from our doctor to eliminate lactose, Rinnah has just exploded - her gross motor skill increased dramatically, her speech expanded incredibly, her thighs got chunky ;), her hair started growing and getting thicker - we have seen the effects of malnutrition on all systems of a person's body, and though in Rinnah's case it was rather mild compared to Krassi, it still influenced all areas of her development. Our bodies are designed to be fed!

But what has really been on my mind is not these more obvious physical impacts, but the impact of that treatment on who Krassi is. On how he thinks, how he feels, how he understands what's happening around him, how he expresses himself to those around him, how he interacts with and learns from his world. One thing that was striking to us when we first met Krassi last March was how relatively well developed his social skills were, particularly in his ability to respond appropriately to people. He was nervous around us, as strangers who spoke strangely, and did strange (to him) things with him (like play!). He was giddy when his baba was even in the room. He was completely unresponsive to one of the staff who had been at the orphanage for many years (including under the old management) and who treated him like an object to be moved from place to place. The image of that woman wheeling this tiny boy into our visiting room in his stroller that first day, and turning and leaving as though she'd done nothing more than put a box on the table of an empty room was striking. Krassi was on his own to face the unknown, and he did not cry out for her as a familiar person because I'm certain he knew she was not someone to cry out to. He showed enjoyment of his time with his physical therapist who was a recent addition to the staff hired by the new director 6 months prior to our visit. And by the fourth day of our visits, he was noticeably more relaxed with us, and even willing to smile, but showed no signs of attachment or reaching out to us for affection. These are all very appropriate responses, and more than we had been allowing ourselves to expect.

We also know that Krassi can (and does) show distress by whimpering or crying. This in itself is incredible to me, as many institutionalized children have learned early on NOT to cry because at best it accomplishes nothing, and at worst may result in physical abuse from staff. I'm in touch with a number of families of his then-orphanage mates who do not cry, but rather laugh in response to pain or fear. We are lucky that Krassi will cry. But I also know that he will laugh at times that do not seem entirely appropriate. For example, when Reuben or Rinnah are near him and accidentally step on his fingers or bump into his leg, he laughs. Is this a "safe" response to pain that he has learned? Or is he really delighted by the real intense physical contact with real, live children - something that he never had? Or both? Or neither? When he appears to be showing pleasure during handling of his lower limbs during therapy or evaluations, or just me massaging and stretching at home, is he masking pain or fear? Or is he enjoying the work of learning those muscles, and remembering the kind and gentle treatment of the orphanage physical therapist who worked with him for 30 minutes five times a week?

Sometimes when I change his diaper, he laughs and makes his happy sounds. Sometimes laying down on the changing pad will trigger tears and agitated cries. Is he telling me with the former that he is learning to trust that I will be gentle and kind as I change and dress him? And is the latter an indication that I moved him or touched him in a painful way? Or does it trigger painful memories? Or are they both ways of him dealing with the deep trauma of what diaper changes were to him for eight years? Once a day yanked out of his crib, down on the table, one set off, another on, back down in the crib until tomorrow. Was it more frightening to be handled by someone who did not care than it was to be left "safely" alone?

We in many ways consider him to be very much like a 6-9 month old infant. But it isn't as simple as treating him like a 6-9 month old infant, because he is a 6-9 month old infant with more than 9 years of memories, and of learning how to stay alive, how to keep yourself alive while still being completely dependent on others. Nine years of having no one to care about him, no one to say, "Don't treat my boy that way!"

As I sit here waiting for him to get through his MRI scans, I know, though he doesn't, that the people caring for him are going to do their job well because I am here, and if they don't treat my boy well, his daddy and I will do something about it. His caregivers here know that we have certain expectations of how he will be treated because he is our son, and we will speak for him when he is unable to do so for himself. Additionally, they see him as we do - as a valuable human being who has feelings and who deserves to be treated with respect.

He did really well this morning. Again, is it because he is actually doing well? Or because he is relying on his well-developed skills of surviving? I'm writing from this point on after the kids' bedtime after a day of reflecting on the morning's adventure. He really did amazingly during the prep, dealing with staff in medical attire (like staff in the orphanage always wear), and with me laying him on the bed to change him into his hospital gown. I even got a smile when I worked him for it a bit. ;)

Love how his face is filling out, even though we can't keep any weight on him!

Krassi has a mommy. ;)

He drifted off with the gas/mask without any issues at all. I realize that the last three years of dealing with a child with medical issues has made things like this much less of a big deal than they were when Reuben was hospitalized over Thanksgiving three years ago. For that MRI, I had Matt with me, and even then I cried as Reu drifted off. Today it was so much simpler. Krassi was peaceful, I knew that nothing painful or frightening was going to happen to him while I was gone, and I had made it very clear to all of the staff involved that it was very important to me to be with him from the moment he was aware of anything so he knew without a doubt that he was not abandoned. By the time I made it back to him after the (much shorter than anticipated) scans were complete, he was just barely moving, and had not yet opened his eyes, so I was able to talk to him and be the first person he saw. I knew he was really waking up when he worked his hand up to push off the blankets that were covering his little naked body. ;) Because he does not do well with liquids, the nurse said it was okay for me to try applesauce. He ate it slowly, and happily, and seemed to be doing just fine. After a little longer I dressed him and bundled him up (with his Mittens On!) He continued to appear to be dealing with everything fantastically until the moment I put him into his car seat. Then he started crying - not as loud and intensely as he can, but probably 80% of the way there.

Questions - does he not like his Mittens On? Or is he feeling the security of a familiar place (our van) as a signal that it's okay to let his feelings fears/distress/uncertainty about the morning out finally? Or something completely different that my mind cannot even think of?

It was not a happy ride home. All the way, until we pulled into our driveway, Krassi was some version of this:

But being home was better, and taking the Mittens off helped, too. Amazingly, he did not once pick or poke at the bandaid on his left arm where the IV had been.

I fed him a little bit more at an early lunch time, and he had a very nice wet and dirty diaper (we were to watch for him to urinate before the afternoon was over), and he played happily in all his favorite places.

Yum. A box. (Although we have rules about licking the floor and biting people, those rules do not apply to other things as long as they are things that will not be damaged by moisture. I figure like a 6-9 month old, he needs the opportunity to explore his world with his mouth!)

"Hi, mom. What are you looking at?" (Notice that he is not quite looking at me. This is pretty typical, still.)

Back to work on that box.

Then, midway through the afternoon,while I was snuggling with my sleepy Reu (doozie of a seizure this morning at 4:30am contributed to a more wiped out guy for the rest of the day), I heard the unmistakeable sound of vomiting. Sure enough, the combination of general anesthesia and more food than his tummy was ready for (and no way of telling me, or knowing to take it easy) resulted in some less than pleasant results for Krassi.

Reu sound asleep. This photo is here mostly so you can see the effects of his Friday tumble still manifesting themselves. He's still swollen, and today is mostly green and yellow, with a line of purple under his eye.

These are the kinds of times when I am so grateful that Matt works at home. Owen helped to move Krassi to a clean spot on the floor while Leah ran down to the basement to get Dad who came up to the rescue so I didn't have to move Reuben and risk waking him at the wrong point in his sleep cycle and triggering another seizure.

As much as it was tough to hear him vomiting (and again, no signs of distress whatsoever - how to know how he's really feeling??) it was SO neat to be able to respond - to know that he had someone near him speaking comfortingly to him. To know that it was mere minutes, if that, that he had to be near the smell of the vomit before someone was cleaning it up off the floor and off of him. To know that his clothes were changed right away, and when the chills hit him, he had his Daddy to wrap him up and hold him close until he warmed up.

Another smaller episode about an hour later resulted in the decision that it was bath time. Krassi loves his baths. As many times as it's hard to decode what his emotional responses to different things are, there are some things that I can not interpret any other way than sheer delight. ;) And bath time is one of those!

We took it r-e-a-l-l-y slow on food at supper time, and so far have had good results. Looking forward to giving him a real meal tomorrow. All in all, not a bad day, and it gives us one more day of showing Krassi what it means to be part of a family. We go places, mommy is with you, we come home, family is with you. You throw up, daddy is with you, you are cared for, you are safe. We love you, tiny boy! And you are definitely worth the time it is going to take to get into your head and your heart and walk this road along side of you.

Mittens-On

This is what I am calling a "mittens-on." As in, "Krassi, keep your mittens on."

My mind has been filled with all sorts of thoughts as I hurried to sew this together tonight. Something as simple as mittens has so many layers when it involves loving and raising a child like Krassi. As I put together this contraption that will make it impossible for him to take his mittens off, I think about the children who were with him for his nine years in the orphanage who were restrained - tied to their cribs, wrapped up so they couldn't move -and wonder what his reaction will be to this. Remember, he doesn't like having anything down below his elbows, so simply wearing a coat with the sleeves down is a challenge for our boy.

But this boy of ours is a Minnesota boy now. And it gets cold here. (Cold for us, lately, is highs in the single digits Farenheit, and lows lower than that. Last night when we came home from supper with Grandma it was -5 degrees F). You can't go without mittens in that kind of weather. Especially not if you're a small nine year old boy whose weight puts you in the 0%-ile for your age. (Wait a minute. How does that work? I thought by the very nature of percentiles that you couldn't be lower than 1% or higher than 99%! But this is what his medical report from one of his first visits home says...) Krassi has no reserves on his little nine year old, 31 pound 6 ounce body to keep his core warm in that kind of weather, much less his extremities. And being out in the cold without your mittens also doesn't work if you're a little boy whose hands, and especially the index finger on the right hand is so chapped because this one little finger is how you have spent nine years experiencing your world. Wipe, lick, wipe, lick, wipe, lick, until it cracks and bleeds.

This is not the post I was planning on writing tonight, but it's getting late, and now that the "mittens-on" is done, I've got to get to bed because I'm waking up early tomorrow (5am) to get Krassi to Gillette by 6am to prep for his marathon MRI. Starting at 7am he will have a one hour scan on his brain, then 45 minutes on his spine, and then another hour on his pelvis. Then there will be recovery time as he wakes up from the anesthesia. I'll be sitting in the waiting room for a looooong time.

Maybe I'll finally finish up his Christmas stocking. ;)

Electrical inspection: part 2

It didn't take too long for the electrical inspector to get back to us on the ground wire for the new sub-panel that was in question during the inspection.  Friday at 5 PM he called (he said he wanted to be sure he got to me before the weekend so I could work on it this weekend) and said the according the the NEC (national electrical code) the ground wire needs to be in the same conduit as the neutral and two hot wires.  I asked if I could run it in a separate conduit adjacent to the other?... NO.  Can I run a ground wire to a ground rod outside the addition instead?...NO.  There are no other options, we had to pull the new ground wire through the conduit that was already installed with the 3 wires in it.

This was not the news I wanted to hear.  When we pulled the three wires the first time several months ago, it took a long time to do and was difficult to do.  I had no idea how we were going to do this.  I asked the inspector, and his best option was to pull the 3 wires back out and then pull the 4 wires back in all at the same time.

Shortly after that call, our bible study group got together and then since it was Friday night (when my brother and his family cover supper and bedtime medication with my Mom) I tried to get to bed a little early at about 10.  At 1:15am or so, Rinnah woke up and needed to go to the bathroom, so I took her down and then came back up to bed, but could not fall asleep.  My mind just kept spinning trying to figure out how we were going to get that ground wire into the conduit...it seemed impossible at worst and extremely difficult and time-consuming at best.  After about an hour of that mixed with praying, I woke Andrea up and we just spent the next hour or so talking. 

I reflected with her about how I really appreciated her dad's help on the addition and how at the same time, it really made me miss my dad.  My dad would have been over here at least once a day either checking to see how things were going or to help.  And any time that I have had questions in the past, I would call my dad to ask him.  So as much as I am thankful for my father-in-law, he still is not my dad and being in the Milwaukee area, he can't just stop by to look at something or give me a hand.  I also knew that I only had about 3 more hours of his help left on Saturday before they left to go home.  There were so many things I wanted to get done, so many things I knew that we weren't going to get to and I wasn't even sure if we would get the 4 wires pulled before he had to leave.  I felt like I was in way over my head.

As Andrea and I talked, she commented about how she had not been specifically praying for help for me on the house as she and I had both been doing earlier on in the summer.  She re-assured me that none of this was a surprise to God and that things would get done when they were supposed to get done.  She recited one of the verses that we had memorized together when we were in grad school.  1 Peter 5:7  "Cast all your anxieties on Him because he cares for you"

After that, I dozed on and off till morning and spent my more alert moments praying/silently singing this song.

I cast all my cares upon You,
I lay all of my burdens down at Your feet.
And anytime that I don't know just what to do,
I will cast all my cares upon You. 

By the time the day started, I had a plan for how to get the ground wire into the conduit.  I didn't want have to touch anything at the existing panel, but rather disconnect at the sub-panel where nothing was live with power yet.  Once we were disconnected, we could pull the conduit off one section at a time and slide it off the 3 wires until we got back to the main panel.  Then we could slip the ground in at the main panel and then feed the sections of conduit back over the four wires and put it all back in place.  Sounded like a lot of work, but the best option available.

I came downstairs, got breakfast started and checked my email quickly before running to Menards to buy the new ground wire that we needed (stranded instead of the solid that I had originally used) so as soon as we were done with breakfast we could get started.  When I checked, there was an email from our friend Duane who had helped me with wiring the previous weekend.  He said he had Saturday morning until noon open to help if I wanted a hand again.  I was completely blown away and on the edge of tears as I read the email to Andrea.  God was reminding me that I am not alone and that he DOES have this all under control.  Later today, Andrea pointed out to me that Duane had sent his email at 10:30 Friday night.  God had answered our prayers before we even uttered them.

Andrea's dad and I finished up a little bit of plumbing supply line and then got started on the panel.  It was a little tricky getting the conduit and wires out of the new sub-panel, but we were able to do it and then the sections of conduit slid off pretty easily.  Before Duane arrived, we already had the new ground wire into the panel and a couple of sections of conduit slid back on.  We finished that while Duane started wire nutting neutrals and hots at the outlet and switch locations to get things ready for the inspector to come back.  By the time Andrea's parents were ready to leave to head home, Scott, Duane and I had completed all of the wiring and things are ready for the inspector on Tuesday.

Next time I am tempted to despair, I need to recall all the ways that God has provided for us during the adoption process as well as the house addition.