Tuesday, April 19, 2011


On April first, I posted on my Facebook page:  "Please pray for Ruslan. He was just sobbing this afternoon. He kept saying, "Mama, Ruslan body doesn’t work!  I tell it work but Ruslan body doesn't work. ...Mama body work, Daddy body work, Matt, Paul, Reilly, Sharon body work.  Mama, WHY Ruslan body doesn't work?"

As you might guess, it was a difficult afternoon. I ended up holding him for about 30 minutes while we both cried it out and I took the time to figure out how to respond.  I waxed and waned a little bit, but I decided in the end to stick-with-the-theme, which has been consistent throughout—“Ruslan, your body does work.  God gave you a great body and it works just fine.  Some things take a little bit longer, and sometimes you might need a little help, but you can still do anything that you put your mind to because God gave you a great body.” 

So, yeah, it sounded great and inspiring while I was holding him on the bed, giving the inspirational speech but I realized after it was all over that the gig was up.  It was either do or die in the next few weeks, because now I had something to prove. 

Thus began what you might call Ruslan's Basic Training.  When he first came, I spent a lot of time figuring out what he could and could not do.  I was almost militant about getting him to do things on his own, mostly because they flat-out spoiled him in Ukraine and he had never really been pushed.  The problem is that once I figured out what he is and is not capable of, I started taking shortcuts and doing things for him to save time, just like they did in Ukraine. So, so, so very wrong of me!!! I took him right back to square one.   

After that day I realized that each time I lift him out of his chair, place him in his walker or on the toilet or carry him upstairs, I am reinforcing the idea that he NEEDS help.  I HAD to stop, regardless of how much time it took, Ruslan HAD to start doing everything on his own. 

We started off that evening watching some you tube links that one of my friends sent showing other kids with CP, their therapy and what they could do on their own.  He loved them and spent almost the whole evening clicking "related links."

The next morning, training began. Ruslan has always gotten dressed on his own.  But, he takes SO LONG, that I have often walked in and hoisted his pants for him or helped him with a button or snap.  I realized that this had to stop.  The very next morning, I told him he had to get dressed all by himself.  He took so long and was so distraught that I wouldn’t help him, he was practically paralyzed with angst.  However, he got everything on himself and got down the stairs on his own.  I still carry him to the bus in the morning, but that afternoon, I told him he would be walking up the driveway and into the house. 

Well, again, you would think I was torturing him with hot iron rods.  He cried and SCREAMED all the way up the driveway.  I actually went inside the house after about five minutes and told him I would be watching from inside.  Poor baby, when I am with him, he works like a screeching snail and just fights and screams seven ways to Sunday, going as SLOWLY as possible.  The result is that I usually leave him to do the job on his own.   When he is alone, he eventually stops screaming, hunkers down and gets to work.  So, he has been alone a lot the past few weeks.  On this day, he didn’t stop screaming.  He screamed at the top of his lungs all the way up the driveway.  I’m sure the neighbors thought I had lost my mind.  It took about 20 minutes to get himself up the driveway and another ten to walk the sidewalk in front of our house. 

I got him up the porch stairs, but decided that he needed to get over the door threshold on his own.  He did great.  He cried and screamed the whole time, but he did it.  He was SO PROUD of himself. He told me ten times that afternoon that he got to the door all by  himself.  And, that’s the point that can drive a person crazy.  He screams the whole time, then he is thrilled when he get’s it done!!  AHHHH!!!  He does the whole walk now on his own, usually under protest, and then he is thrilled at the end of each walk, and lets me know again and again that he did it by himself (as if I hadn't invested thirty minutes and half an ear drum to get the deed accomplished). 

The second thing I usually  helped him with was going to the bathroom.  He hates to be alone, so he was always asking me to take him to the bathroom.  He had been going pee on his own, but I was helping him to lean against the toilet and/or sit on it whenever he had to poop.  This also had to stop.  He was totally dependent on me to take care of a basic bodily function.  SO, a few days later, he said he had to poop and I told him he had to get on the toilet on his own.   Again, you would think I was burning him with hot iron rods.  It’s just incredible, how that boy can scream.  Anyway, it took about 20 minutes of me SITTING ON MY HANDS and coaxing him on, but he actually got himself up onto the toilet alone, did the deed, and wiped himself.  Then he looked at me like I was Christmas Morning and said, “Mama!  All by myself!!” and gave me a huge smile. 

Despite being so proud of himself, he screamed every time he had to go to the bathroom for about five days.  Then, when that didn’t work, he started peeing his pants.  He hates to be alone and he was really convinced that he “can’t” (despite the fact that he DID IT every time) so he just stopped going altogether and peed his pants.  When he pees his pants, he is often sitting or laying on the floor, then he was crawling up the stairs to change himself, leaving a long trail of pee-soaked carpet.   

A few days later, he pooped in the bathtub.  Oh my goodness, this made me angry.  That night, I put him in diapers.  This made him furious, as I knew it would.  I told him that he had to have three dry days to get back into underwear and five dry days to earn “movie night” (sleeping in the living room with all the kids every Friday night).  So far, this has worked.  After a week, he was totally taking care of his bathroom needs on his own. He still tells me whenever he has to go, probably hoping I’ll forget and come along for the ride, but I just remind him that he is a “big boy” and he can do it all by himself. 

The final BIG hurdle was making him use his walker instead of combat crawl all over the house.  This was tricky, because I realized one day that he’d been crawling all his life and was just carrying on as normal.  Then suddenly, the walker appeared and the crawling that was normal was now forbidden.  We’ve been slowly requiring him to use the walker to get from place to place.  I don’t want him to grow up sliding across the floor.  He’s NOT happy about this, but he gets the point and he has been trying. 

There were a few other battles along these lines.  I was helping him with a lot of transitions; getting up on the stool to brush his teeth, getting in and out of the bathtub (not pretty, but he can do it on his own now), getting into and out of chairs, getting in his walker, up the stairs (he can crawl up and down them on his own, it just takes TIME) etc. etc. etc.  I have spent the whole month of April sitting on my hands and reminding myself that I MUST NOT HELP THAT BOY. 

I’ll tell you what, it’s murder.  When I'm sure he can do something, I find myself getting more and more impatient and annoyed.  Sometimes, I just want to strangle him with my bare hands and say, "STOP SCREAMING and get to work!"  That is when I realize I really need to walk away, even if he needs me there, because I'm just too angry. 

It's worse when I’m NOT sure if he can do something. Then, I wonder if I am doing the right thing.  Plus I keep telling him, "I'm right here.  I won't let  you get hurt." Yet, twice he has fallen and I wasn't fast enough to catch him.  Both times, I hugged him, but then I had to force myself to make him get up and finish the deed, despite the falling.  If I let him off the hook after a fall, he would know that falling was the ticket to get out of work.  He HAD to finish, ESPECIALLY if he fell.  After the second fall, I had to change my mantra. We both had to embrace the fact he might get hurt, but getting hurt is part of life.  

So far, he’s managed every single task.  It takes a lot of TIME, a lot of screaming, a lot of coaxing, a lot of leaving him alone to scream it out and telling him I’ll see him when he’s done.  I feel heartless, but it’s the only way.  The only thing I help him with now is putting on his braces and shoes because he’s not nimble enough.  

A few nights ago, after he got on and off the potty all by himself, got totally undressed all by himself, and was about to crawl into the bathtub, he turned to me and said, “Mama.  Ruslan body work now.  Ruslan can do it all by myself.  Ruslan body work now Mama.”   I said, “Yes.  Ruslan body does work.  Thank you God, for Ruslan's body.”  Then I went into the hallway so he wouldn't see me cry.

Tuesday, April 12, 2011

Finally, That Video of Ruslan Walking

This video is from the trip to VA Beach a few weeks ago.  This was literally Ruslan's first moments with his new walker.   Sasha took the video and posted it on his ministry's web site. 

After just a few weeks, Ruslan is walking much steadier and faster than you see here.  He still has the forward tip, but it's not as severe.

Pray that I learn how to post from a video camera so you can all see his progress!


Perfectly Rational Family Outings

For the record, I have never tipped a canoe, ever.  I've BEEN tipped and I've purposefully tipped myself, but I have never accidentally tipped over in a canoe.

Therefore, you must agree that taking the kids on a canoe trip, regardless of their ability to walk, swim, paddle or keep their heads above water is a perfectly rational thing to do.

Besides, we have to canoe.  It's what we do.  For a few weeks there, when we first came home with the boys in December, Bill was really worried that they were too severely delayed and disabled to stay safely in a canoe.  I probably can't explain in words how depressing that thought was to both of us.  We really love the rivers here.  They are beautiful!

You have to GO to really understand, but since we got those canoes, anytime we want, we can take the family away and spend an afternoon or a weekend floating in utter quiet (minus the occasional bickering),  miles away from televisions, traffic lights, Wal marts and internet connections. 

I decided that, no matter what, our family would still go canoeing, even if I had to get a sitter for the boys.  Luckily, that won't be necessary.

April 10, 2011.  First canoe trip of the year.

No leg braces today!! 

I let Matt take the boys out on a short trip while we were waiting for Bill to bike back from the take-out spot.

Ruslan's Turn!

You just can't find sparkling water in a subdivision.

Find an island, take a nap.

Thank you God, for my family and for those canoes.

Wednesday, April 6, 2011

Virginia Beach: Part Three

So, the last day at Virginia Beach (Sunday) was the day of some sort of Virgina Beach/St. Patricks Day marathon, officially named the Yuengling Shamrock Marathon.  I got the Shamrock part, but couldn't figure out what the "Yuengling" was all about.  I thought maybe the Chinese and the Irish get together once a year to race and drink.   I figured we'd fit in since Sharon is Chinese and Will walks like a drunken sailor.  I know, it's prejudice to assume that all Irish are drunks, but I found out when we got home that Yuengling is some sort of brewery.  I wasn't all that off.

So, yeah.  We fit in well with the beer drinkers at least, but we kind of stood out from the athletes.  I don't know how I always end up at sporting events, but if this trend doesn't end soon, I'm either going to start wearing a burka or stop eating all together.

Luckily, most of the attention was on Ruslan.  You will remember that this was our first day with a fully functional walker.  We both just loved it.  Ruslan, because he could walk on his own and ME, because I didn't have to carry him everywhere.

What I didn't realize was how much attention that boy would draw in his walker.  He's small, he's cute and he's very, VERY loud.  The walker sort of clanks when he lifts it.  He tends to veer left (his right side is stronger) so every few steps he lifts it to get straight again and there is a little "clank" as it hits the floor. Then there is the squealing.

He and Will have this habit of squealing in delight.  All weekend long, they would squeal whenever any aspect of their view changed.  Walk in the door?  Squeal.  Turn a corner?  Squeal.  Enter the elevator?  Squeal.  Exit the elevator?  Squeal.  Squeals carry well in cement buildings.  Outside was no better.  Virginia Beach is made of cement.  The boardwalk is cement and there's a huge line of hotels made of cement with very little space between them.  If you stand on the boardwalk facing the hotels and talk, the sound comes right back at you.  If you stand on the boardwalk, facing the hotels next to a shrieking child, the shrieks come right back at you.

To make matters worse, we had all recently seen the play "Annie" in live theater near our house.  It was extremely well done and Ruslan loved it. He loved the theater, the story, the sets and the songs, which he memorized. Once that boy gets a song in his head, it's coming out for at least a week, no matter what. 

So, believe it or not, all weekend long, Ruslan was schlepping along in his walker clanking every few steps and singing, "TOMORROW, TOMORROW, I LOVE YA, TOMORROW!  YOU'RE ONLY A DAY AWAY"  in between squeals of delight.  It was like being a ring leader for my own little traveling circus with Ruslan in the center ring.  Will was always right next to him, tottering like a drunk and trying to keep within touching distance.  The rest of the kids were lined up somewhere between me at the rear of the line and our next destination, weighted down like pack mules with bags, blankets, snacks and the large tent, since the circus train had obviously broken down. 

Everyone stared. 

All day Saturday the runners were arriving.  Saturday evening there was some sort of "carb loading" dinner so the lobby was packed.  Sunday morning was full of runners at breakfast and as we went out to the beach, I realized it was going to be a day long event.  I found out later that there were 24,000 participants.  (http://www.shamrockmarathon.com/).  It took forever to cross the boardwalk to get to the beach and even longer to get back across.

I got a few photos as we were waiting for a break in the stream of sweating humanity. 
I keep thinking there's a fundraiser lurking in here somewhere, if only I could figure out how to exploit it.
On the way back to our car, Ruslan decided he wanted to "run" along with the runners.  You can't see it, but the words, "TOMORROW, TOMORROW..." are banging off the sides of those buildings, coming back across the runners and smacking everyone in the face. 

I'm used to getting stared at.  Surprisingly, this is NOT because of my striking resemblance to Angelina Jolie, but rather because of my resemblance to Betty Crocker.  The Crocker Co. made her out of a composite of average female facial features and they re-paint her every few years.  Apparently, God made me using the same formula.   When I venture into public, people frequently see me, pause, take a second glance and then the more outgoing ones ask if they know me from somewhere.  In that one weekend alone I was  asked if I attend -- -- church, if I went to such and such high school, if I was a "Deane,"  and if I was a member of a certain singing group out of Culpepper.   I've learned to just say, "No, but don't try to figure it out.  I have a generic face. Everyone thinks they know me."

I thought that was an unusual weekend, but now that I have Ruslan and the walker with me, it might be the beginning of a trend.  On Saturday in the grocery store parking lot, after explaining (again) what church I attend, someone gave $5 to Ruslan for "working so hard" in his walker.   I told him "no" twice, but he finally just handed the $$ to Ruslan who had NO IDEA what it was and walked away.

If this keeps up, I  may just go with it.  We're poor, disabled relations.   You can leave donations on the windshield.