Sunday, December 11, 2011

Five Mesmerized Children, Four Cups of Vegetables, Omega-Three Fatty Acids, Two Competent Adults and One Word Sentences

A few days ago, I was late with dinner.  I know I was late, because I passed Will as I was coming up from the basement with some frozen chicken.  He was on the way down the stairs (he follows me everywhere), and I was on the way back up.  I noticed that he was carrying the red cup we use to measure dry dog food.  Sure enough, it was half full and when I asked him to open his mouth, he smiled and turned his head.  I gave those little chipmunk cheeks a squeeze and found a stash of about ten Pedigree dog food chunks that he was storing for the winter.  I realized my starving child was snacking on dog food. 

I can’t remember if I took the cup away right then, but I’m darned sure I didn’t scoop the soggy kibbles out of his cheeks.  I went back upstairs and checked the bag instead.  It said things like, “100% Complete and Balanced Nutrition!” and “Advanced Anti-Oxidant Formula with high levels of long-chain omega-3 fatty acids to help support joint health.”  It also listed whole wheat as the first ingredient, chicken as the second and no sugar, which is more than I can say for Chocolate Teddy Grahams.  I figured he was safe.  I actually did a little cost comparison later on and   …Oh, sorry. I digress.

For the record, I did eventually take away the red cup and put away the dog food.  Then I put the chicken in the microwave to thaw, and went upstairs to talk to Bill. 

“I have an announcement.” 
(tap, tap, tap on the keyboard…)  “Yes?” 
“Every day around dinner time, I want you to come downstairs and just hang with us.”
(tap, tap, tap on keyboard….pinky taps Enter….instant results….) "Oh?"
...“You’ll have to leave the computer to do this.  Then you’ll need to walk down the stairs, into the living room and actually talk with some of the smaller humans who live with us.  There won’t be any computers involved and you will be required to communicate verbally."
(silence.  Tap, tap, tap) "Mmmm."
"…Am I getting through?”
“Sure.”
“I don’t want to ask too much, but at some point during the evening, I’d also like you to use complete sentences, the kind with both a subject and a verb.” 
(tap, tap, tap, Enter)  “….Ok.”

I left the room.  Apparently, I’d penetrated the great wall, because a few minutes later, Bill came downstairs.  He did the customary glance toward the living room (five children and a dog piled in front of Timmy Turner), glance toward the kitchen (your basic mess), weighed the lesser of many evils, and started to load the dishwasher. 

Will was sitting next to me on the butcher block island while I cut vegetables.  I've eventually figured out that it’s easier to have him next to me on the counter than tripping over him on the floor.  The microwave beeped.  I lifted Will off the counter, took the chicken out of the microwave, put it on the counter next to the sink and realized I needed to wait until Bill was done with the dishes before I could rinse it off.  I cut a few more vegetables, threw the waste in the trash, saw that Bill was closing the door to the dishwasher, and went to get my chicken.

My chicken was gone.
I asked Bill, “where is my chicken?” 
He said, “hmmm?.”
“I put it on the counter next to you.  Where is it?”
And then Bill said, “I don’t know where the chicken is. ...It was on the counter. …What did you do with it?”  As if I knew where the chicken was and I was just asking him to make conversation.

We both glanced along the kitchen counter tops, saw that the chicken was gone and went to look for the dog.  However, the dog was on the couch, comfortably nestled between two mesmerized children.  She did not look guilty.  It also happened to be pouring rain outside. Starving as she is, I didn’t think that the dog would brave all that rain just for some chicken, especially when there were dried chicken kibbles waiting for her in the red cup. 

That left the children.  They are not above hiding things from me if the urge arrives.  They’ve hidden my keys enough times to warrant interest, but not dead fowl.  I asked each of them in turn if they had taken my chicken and they all replied, “no” with appropriately bored expressions.  Then I asked, "Does ANYONE around here communicate with more than one word?"  Someone said, "no."

I went back to the kitchen.
There was Will.  I said, “Will, did you take mommy’s chicken?
Will smiled and yelled, “YES!”
“Ok, what did you do with it?”
Will smiled again, threw his hands up in the air and said, “I  ATE  IT!”

What does one do with this?  Bill and I started tearing the house apart, looking for the chicken.  It couldn’t have vaporized.  It had to be somewhere.  At first, I was just concerned about dinner.  I hadn’t been shopping in a while and that was the last of the meat, so if we didn’t have chicken, we were looking at dried beans, which take a while to prepare.  Then, as time progressed, I started to really wonder where the chicken might be and realized that in a few days, a dead chicken might REALLY SMELL.  I had a mouse die once under my kitchen cabinets and it was AWFUL.

We started in the kitchen and made bigger and bigger circles looking up and down, trying to think where WE might go if WE were a dead chicken.  After about ten minutes, I started to doubt myself.  Did I really take the chicken up from the basement?  I went back down to check the freezer.  No chicken.  Then I thought, “perhaps I absentmindedly took it upstairs? I went upstairs and went through all the bedrooms and the bathrooms.  I even dug through the laundry. 

Meanwhile, Will was following me around the house and screaming, “I TOOK IT!! I TOOK THE CHICKEN!”  But every time I asked him where it was, he threw his hands up in the air and said, “IN MY TUMMY!”  then he flashed me his huge smile.  Bill was looking all over the place and when the chicken didn’t turn up, he actually asked me, “Are you losing your mind?” as if this was my fault.   So I said, “LOOK, you saw me put the chicken down next to the sink.  I walked away.  YOU are the last person seen with the chicken, therefore, YOU are the person-of-interest here.  What did you do with my chicken?"

I also thought that perhaps I like him better when he limits himself to those one word sentences.

We finally decided to send Bill to the store and brace ourselves for the dead chicken smell that was bound to greet us in a few days.  As Bill was walking toward the garage, he passed the dog cage.  We have a wooden dog cage that is designed to look like an end table.  It’s really cute and the kids love to play in there.  Will spends a lot of his time gathering things for his personal museum.  Sure enough, Bill glanced inside and there was the chicken. 

I asked Will if he had put the chicken in the dog cage?  He gave me his biggest smile, threw his hands up in the air and said, “YES!! I TOOK IT!  I TOOK THE CHICKEN!”  When I asked him “Why did you take mommy’s chicken?”  He smiled and said, “Because.”   

Thursday, December 1, 2011

Have I Mentioned That Two of My Boys Have CP?

I began writing this post to justify a coveted CP “button” on my blog.  But, then I realized that, unbelievably,  I've never written the story of our “decision” to adopt Ruslan and Will.   (and, of course, the cool CP button is not appearing on my post. ...sigh...anyway...)

I first heard about Ruslan from my friend Amy.  She has a web site full of special needs children in Ukraine who are waiting for families.  (http://ukraineadopt.com/waiting-children.html) She posted about a boy, Sergey, who was in an institution.  By the time I heard about him, he was six years old and had been tied to his bed for a year; no school, no therapy, no movement, no bathroom (they just wipe up after him)… nothing.   He was kept half dressed and left on a vinyl mattress all day and all night.   He had developed Scoliosis from lying on his side all the time.  He also had rickets and had lost a lot of his mental ability.  He couldn’t walk, couldn’t talk and no longer even responded to his name.  At the time, we already had five kids at home and our oldest was starting to become a  handful.  We finally decided that Sergey was so involved, we really couldn’t handle him.  So, we said, “no.”  

In the end, God took care of it.  Sergey was adopted by another family in NC.  However, the damn had already burst.  Before I heard about Sergey, I knew that there were orphanages in the world, I already had two adopted kids, but I had NO IDEA that there were children who were tied to their bed 24/7.   ….Now I knew. 

About a year later, Amy contacted me about Ruslan, who had CP and was headed for the same institution.  I wrote down all I could about him and took the information to my husband.  He said, (and I'm quoting him directly here) he said, “No. No Way.  Not a chance.”  I took this as a “Let’s think about it,” and told Amy we were interested.  A few days later, I got a call from Sandy, who had met Ruslan in Ukraine and could give me first hand information about him.  After talking with her for a few minutes, I took the phone to Bill who would NOT even TALK with her on the phone!!  It was a little embarrassing, to have to tell Sandy that my husband REFUSED to even TALK with her.  I started to think that maybe I had mis-read him and I needed a new strategy.  So, I started to pray.  To make a long story short, the next time I asked my husband about Ruslan, God had done such a number on his heart that my husband actually, TOOK HIS HANDS OFF HIS KEYBOARD, looked me in the eye, and said to me, “I guess as long as we’re going over there, we might as well get two, right?” 

I LOVE that!!  Two years and several thousand dollars later, we are now the proud parents of Will (six years old) and Ruslan (eight years old) both from Ukraine, both with CP, both the size of five year olds, and both physically challenged, mentally delayed and emotionally disturbed. 

First Will, who is so much easier to write about.  He turned six a few weeks ago.  He has Ataxic CP  (the floppy kind).  He can walk and really can do just about anything physically, but he falls a lot and he has low muscle tone.  My guess is that he also has FAS (Fetal Alcohol Syndrome) and he’s microcephalic.  Besides the therapies, the only way his CP really affects our family life at the moment is that he needs to hold someone’s hand when he walks.  He’s charming enough that this is not a problem.  He has four eager siblings who line up to help him wherever we go. 

My other CP son is Ruslan.  He is eight and has Spastic CP (the tight kind).  His official diagnosis is Spastic Diplegia (below the hips) but his arms are SO TIGHT that I think he could easily fall into the Spastic Quadriplegia category.  His CP is more of an issue.  When he came here, he could not hold himself up on his legs.  Even with a walker, he was pretty much using his arm strength to stay up and dragging his legs.  He can now walk with a walker, using his legs for support, but he has no balance.  My personal hunch is that this is about as good as things are going to get, but we’ll keep trying.   Also, when he came, he could barely hold a pencil and was totally dependent on his caregivers for EVERYTHING.  He can now take care of all his personal needs (wash and dress himself, play by himself, feed himself etc.) and last night before bed, he was writing his letters on a wide ruled sheet of paper and keeping them within the lines.  

 It’s been amazing to watch his progress.  Because of this, we bend over backward to get him to do as much as he can independently.  It takes a lot of time and half the people in my county think I am a tyrant.  However, I am OK with this.  I’m in the habit of telling the “helpful” people in my local Wal Mart, “Thank you, but unless you want to follow him around for the rest of his life, you’re not really helping.” 


Both boys get PT and OT at school and they both get extra PT and horse therapy after school twice a week.   I stretch Ruslan every morning for about 30 minutes and he sometimes needs help with transitions.  We haul his walker and wheelchair on the bike rack on the back of our Ford and we don't do anything quickly.  It's not pretty, but really, the most surprising thing about the CP is that, as far as their PHYSICAL disability is concerned, once you embrace it and fit it into your routine, it’s usually not a big deal.

The mental and emotional baggage they came with….that’s a different story.  

<a href="http://elliestumbo.blogspot.com/search/label/CP%20connection/" style="border: none;"><img alt="Stumbo Family Story" src="http://i254.photobucket.com/albums/hh90/ellenstumbo/CP-connection.jpg" style="width: 129px; height: 129px;"/></a>

Saturday, November 19, 2011

Money Week

Bill’s company reimburses employees for certain adoption expenses. We received a hearty reimbursement check a few weeks ago. It was a mere fraction of our actual expenses, but it was still nice to have that little bump. For a few days, we were rich!

Sunday: We arrived at church both on time and reasonably well groomed. Unfortunately, we also forgot Ruslan’s walker. This meant that one of us had to carry him or two of us hold his hands as he walked to church and the car. After church, we went swimming. In light of our new finances, Bill talked me into a family membership at a local health club (left to my own reasoning, I could have easily proved that it is more economical to remain unhealthy and die young rather than pay the monthly membership fee). We’ve been going swimming on Sunday afternoons because their “therapy pool,” which is kept at a balmy 96 degrees, is open for free swim on Sundays. Oh, to be WARM! It’s almost worth the price (almost). It’s one of the best things we’ve ever done. We have something to look forward to after church and the kids come home wiped out so my essential Sunday afternoon naps are uninterrupted. The one drawback of the day was that we also had to carry/walk Ruslan to and from the pool since we still didn’t have the walker. On that note, things with Ruslan have been much, much better. I’ll write more about that later. Thankfully, he is improving significantly.

On Sunday night, Bill mentioned that he ordered a new bike on e-bay that he’d been obsessing over for a few weeks, bringing his total up to three bicycles. Discretion forbids that I name the price here, but suffice to say that it was more than my first car and a good chunk of that reimbursement check. We were poor again.

This is our following conversation:

Marnie: “This is why we are all starving. You keep squandering all the grocery money.”
Bill: “I knew you were going to say that. Nothing you say can surprise me anymore.”
Marnie: “Good, in that case I’ll just let you know right now that we are going to adopt two more girls.”
Bill: (pause) “Ok. Just let me have some say in the whole thing.”
Marnie: “Of course you’re going to have some say. It’s going to be your idea.”
Then I gave him a kiss on the cheek and left to rake the living room.

On Monday we began horseback riding lessons at a new farm. Ruslan and Will are getting “Horse Therapy” once a week at a farm in town. Three of my other kids got wind of the deal (how does one say, “no” to one child and “yes” to another?), so it was three riding lessons plus two horse therapy sessions each time. Oh my, that was painful. I started calling around and found a local farm that offers lessons for about half the price and is only three miles from our house rather than fifteen. As soon as I turned into the driveway of this farm, I was struck with the sin of covetousness. It is BEAUTIFUL. The farm is in a small valley and butts up to the mountains. They have an incredible mountain view and I am going to get to see it every week, for half price! (Thank you God, for that view.) I wonder how they ever get anything done. If I lived there, I would spend all my time just soaking in those mountains. It was cleansing for my soul, which is good because…

Later that night I mentioned to Bill that maybe we could buy a second walker for Ruslan and just keep it in the car. My reasoning for this is that our garage is in the basement (I know, what total idiots would adopt a handicapped child while living in a multi-level house?) and helping Ruslan down the stairs and into the car is a full-man job, usually falling on me. One of the other kids will take Will down, but for some reason, I am the one who usually ends up making the trip back upstairs to get the walker, if I remember at all. This means three trips to the car for every outing: one for Ruslan, one for the walker and one for whatever it is that I realize I forgot as I’m backing out of the driveway. Plus, I finally found a reasonable supplier (http://www.kayeproducts.com) and I got our last walker for $200 (negligible considering I was steered toward $2000 walkers when this all began). So, I made the case to Bill and (brace yourself) biker-boy actually said to me, “I don’t know. $200 seems like an awful lot of money just to eliminate a trip upstairs.” I did not mention the bike/healthclub membership at this time because in the next breath, Bill asked me if I had found any girls to adopt. I hadn’t even started looking. This was a gloriously unexpected opening. I decided I would be more effective if I fumed over the money issue for a few days and went to look at special needs girls available for adoption on the internet.

On Tuesday, I fumed.

On Wednesday, my friend Maryann called. She’s the one who lost her husband in a biking accident in May. She misses him dreadfully and my heart aches for her on a daily basis. An officer from her base in Japan was in the states and he called that day asking if he could stop by. She invited him to dinner and about half way through the evening, he mentioned that the military was finished investigating the bicycle accident. They had held onto her husband’s bike and helmet during the investigation. Since it was over, he was returning them to Maryann. He had brought the bike with him to the states, assembled it, and he had it with him. He told her there was still some blood on the helmet, but the bike was undamaged. He put it in her garage before he left. She still hadn’t looked at it when we talked, but eventually, she’s going to have to walk into that garage. So…. That was hard.

Talking with Maryann served to remind me that my husband does have some redeeming qualities. He is, after all, alive. I brought up the walker again, mentioning this time that it is a mere FRACTION of the cost of his THIRD bike. Then I paused for effect. Then I told him that I forgive him for being imperceptive about our money, but if he doesn’t agree about the second walker, I’ll write about it in my blog. He said, “Go ahead. If you do, I’ll take pictures of our living room and post them in the comment section.” However, I am not afraid of this. I reminded him that most of my readers are women and that both of our mothers like me best. He told me to order the walker.

On Thursday I got a report back from a gait clinic where I had taken Ruslan in August. After three months, they finally sent me his evaluation. The doctor decided that his condition was not severe enough for surgery at this time, but asked to see him for another evaluation in two years. In the meantime, they recommend that we continue with physical therapy, horse therapy and swimming. This freed up a bicycle-sized chunk of money that would have gone toward the deductible/copay of the surgery: anesthesiologist, drugs administered, surgeon, use of the facility, and follow up appointments. I know this because of what we went through with Will’s eye surgery. We were rich again.

Later that night, Will told me, “my tooth hurt.” I suddenly remembered that Will had so many cavities when I first took him to the dentist, they recommended putting him under general anesthesia and filling them all at once. At the time, Will had eye surgery coming up, braces he was getting used to, trips we were about to take and family coming to visit. I decided to put it off for a while. Sadly, so much has been going on in the meantime that I totally forgot about his teeth. Pitiful. I had left him with unfilled cavities for six months! I felt horrible and spent the night berating myself and hoping that he would wake up pain free.

On Friday morning, the first thing Will said to me when he woke up was that his tooth hurt. Perfect. I should have taken care of this months ago. I spent most of the morning in a guilt ridden state. My dentist doesn’t work on Fridays. Apparently she is not alone in this. I left a message asking for an appointment to put Will under the general anesthesia and get the other cavities filled. Then I started calling dentists to see if anyone had an opening between now and Thanksgiving. I thought if I could just get that one problem tooth taken care of, we could get through Thanksgiving pain free and deal with the other cavities later. I finally got an emergency appointment and ran to pick up Will from school. He was in the middle of his Thanksgiving feast, wearing a T-shirt dyed brown, cut with fringes and painted with Indian-type stuff. He also had a paper headdress with six feathers (he’s an important Indian) and I brought along Cookie Monster, Elmo and the “Big Yellow Bird,” just in case. He was the picture of special needs cuteness. I sheepishly explained our situation to the dentist who looked in Will’s mouth expecting a mine field. What she found was that his teeth shouldn’t be causing him any pain, but he had an ulcer on the inside of his cheek. It was $85 for the office visit. For the second time this year, I had taken my child to a doctor, only to find out they really didn’t need to be seen.

Last night Bill asked me again about girls available to adopt. I found about ten that would fit easily into our family. So, I showed him the list and we picked a few that I am going to ask for more information about. I didn’t mention the fee schedule. From my perspective the children are a given, it’s the money that comes and goes. We ended up talking about a few house repairs/ improvements that we really need to take care of and Bill handed me an application for a 0% credit card. We are poor again. …It’s better this way.


Tuesday, November 1, 2011

My Husband Shaved His Legs

My husband shaved his legs. 

I’m having a hard time dealing with this emotionally.  After all, the man is half Norwegian.  It’s not like he was particularly hairy to begin with.  Before we married, I mocked him enough about his lack of manly­­ chest hair that one of our groomsmen gave us some of his own chest hair as a wedding gift.  I tried to implant them with a safety pin as Bill was sleeping but it didn’t really work.  Plus, shortly after that I learned that the “waxed look” was in, so I let it go. 

Bill hit puberty a few years later and grew enough manly body hair to put him farther along the spectrum.  Even though God graciously made up for what might be considered a deficiency, Bill has no appreciation for God’s merciful bounty.  He shaved it off last Wednesday night.  I think he may be taking particular evil glory in this, because he waited until bedtime, when I was certain to be nearby.  First he went at it with the electric clippers then he took a razor in the shower. 

I now have a husband with prettier legs than me.  I also have two teen age sons who are paying very close attention.  For the past few days, every time Bill walks into a room, they sort of shriek and hide their eyes.  And then we have the “bald” comments to add to the family conversations.  When Bill said, “Reilly, I’m putting my foot down...”  Matt muttered “I’m putting my BALD foot down...” and so it goes.  

It all started a few years ago when Bill bought a road bike.  He’s steadily been getting faster and faster until this year, he realized he had a shot at hitting the top spot in the “Masters” category for triathlons in his series.  Not entirely according to talent/training mind you.  The man is an engineer.  He figured out the point system and then realized if he went to the less well attended races, he had a better shot at placing high and getting more points.  On the last race of the season, he had a chance at the top spot --if his competition didn’t show up.  He did show up, of course, and beat Bill by one second.  So, Bill missed the first place Masters spot over one second.  

I gave him a new nickname (Loser) for a few weeks after that, which was really fun for me, but it’s only fair to note that what happened next is partly my fault.   Bill took revenge by signing up for the Beach to Battleship Iron-Man Triathlon in North Carolina.  http://beach2battleship.com/

The triathlon works like this:   Swimming is first with the entry at the tip of Wrightsville Beach and a frigid swim up the bay for 2.4 miles.  The racers exit at a dock and run to T1 (Transition 1) where the racers can change out of their wet suits, into their racing clothes and grab their bikes.  Then they bike for 112 miles and end up at a second transition area (T2), on an island where the battleship North Carolina is dry docked.  Here they drop off their bikes, change into their running shoes and then do the 26.4 mile marathon (Freaks).  They finish at the same T2 spot where everyone has a good cry and then we all go home.

Thank God, Bill is not a complete idiot.  He signed up as part of a relay team.  Relay teams have an advantage because they don’t have the built up fatigue of the other racers.  Also, for the transition, all they have to do is meet and pass off an ankle bracelet with the electronic chip/timer.  They don’t have to change clothes/shoes like the other racers.   Bill did the bike race while two of his friends, Glen and Casey, did the swim and the run.  

Have I mentioned that we have six kids?  Bill said he would go alone but, “it would be more fun if you came along…”  Then he went through his check list:  smile, look her in the eyes, adopt loving, hopeful expression, a gentle squeeze on the arm, count silently to 100 and wait for response.  Repeat as needed until subject complies. 

We took the kids out of school early Thursday and drove the rest of the day to Wilmington, NC.  On Friday, Bill drove the bike course, went to the pre-race meeting and we met up with his team mates to eat dinner and humbly pray that the racers, their wives, children and marriages all survived the next day.

On Saturday morning at 5:30am we snuck out of the hotel room and I drove Bill and Casey to the race site and dropped them off.  I now had two hours to wake/feed/grab the kids and get back to T1 to see Bill off.  When I tried to wake them, Matt and Paul merely rolled their eyes.  Reilly smiled and said, “no thanks Mom,” and when I asked Sharon if she wanted to come with me to watch Daddy start his race she said, “not even one little bit!” and put the covers over her head.   This left me with Ruslan and Will, my least mobile children and Mary (Casey’s wife) and their three kids ages 6, 4 and 2—not exactly mobile either.

We got to T1 about 8am.  It was a mad house.  There were 750 people doing the full triathlon and 1,000 doing the half (as in “half the distance,” 1.2 mile swim, 56 mile bike, 13.2 mile run; for the more emotionally well-adjusted racers).  The swim started about 7:20am and Glen was such a fast swimmer that by the time we found Bill, we really only got to talk to him for a few minutes before Glen ran into T1.  Glen was the tenth swimmer to finish, but since they had such a fast transition, Bill was the second cyclist out of T1. 

He told me later what a rush it was.  As the second cyclist out of the transition area, the crowd was going NUTS!  The streets were lined with patches of cheering people all the way out of town.  He passed the first cyclist about two miles into the race so for the next fifteen miles, Bill was the lead cyclist.  There was a motorcycle that trailed the lead biker, so they all knew Bill was in the lead.  Then he got passed and he was second again until about ten miles before the end of the race when he got passed again.  Every few miles, there were aid stations with water, food and people cheering like crazy.

Meanwhile, Mary and I were back at T1.  It was a 112 mile race, so if Bill averaged 25 mph, that meant just over 4 hours to walk back to the car, drive to the hotel, wake/feed/grab the other kids and drive about 10 miles to a ferry to take us to T2.  We needed every second.  It was murder.  Suffice to say that it involved two closed roads, missed directions, Droid internet not working (!), an invisible trolley and me jumping a curb and parking on grass in order to catch a “water taxi” over to T2.  We didn’t get there until 12:30 and I was frantic thinking that we’d missed Bill.

The second transition area is on an island on the Cape Fear River.  There is NO WAY it was a big enough area to hold 1750 racers and their families.  It was packed!  Plus, apparently, the island floods every day at high tide.  We waited by the road on a strip of land about three feet wide with the racers on one side and a swamp on the other.   It was cold and windy.  Mary, Glen and I had nine total kids between us aged 2 to 14 that we were trying to keep on the three foot strip, out of the water, out of the road, warm, entertained and alive while we watched for Bill.  There were tons of racers coming in because 1,000 of them were just doing half the distance and coming into the same T2 area.  There was no indication re: which racers were from the full or half Iron Man.  We finally decided to look for expensive bikes/helmets and shaved legs.  I was expecting Bill at 1:00 at the very latest, but that time came and went with no Bill.  I felt better thinking that we hadn’t seen many other racers who might be  doing the full race, but the minutes were starting to add up.  1:05, 1:10, 1:15, the last time he was this late, he had wiped out and left half his left hip on the roadside.  I was getting worried.

In fact, I was near tears for most of the morning.  While Bill was biking, there was no way we could communicate.  I was worried that he was cold or hungry, that he was getting rained on, that he pulled a muscle or was cramping, that he wiped out or that he was dead.  He normally averages about 23 to 25 miles and hour on flat land and he has wiped out and hurt himself in the past.  Plus lurking in the back of my mind was the fact that Maryann’s husband, Bruce, died in a biking accident just five months ago in May.  It was a hard morning for me.  As we were driving toward T2 Matt finally asked me, “Mom, what is WRONG?”  So, grabbing the teachable moment, I said to him, “Matt, you’ll understand someday, but when you get married, it’s like God takes part of your soul and melds it with the other person’s.  When they hurt, you hurt, and that’s just the way it is.  It only gets worse when you have kids, because the same thing happens, until your soul feels like Swiss cheese and you just don’t have much left to work with.”  Matt looked over at me, rolled his eyes, said, “Geez Mom, it’s like you’re Voldemort!” and I felt my teachable moment end.

Bill finally arrived at about 1:25.  He was the 17th fastest out of the 750 racers, but since Glen swam so fast and their transition was so quick, Bill was among the first few racers with shaved legs to arrive.  We were waving like mad but he never saw us.  I rudely left Mary with the kids and ran over to T2 to find him.  He looked AWFUL.  He was in so much pain, he couldn’t move but he couldn’t stay still either.  He kept stopping, then leaning, then moving around again, then stopping, then leaning, trying to get the cramps out, but knowing he didn’t have enough energy left to stand on his own to stretch, and looking for somewhere to lean again.  I’m sure his blood sugar was low.   He was cold.  He was wet, and he kept saying things like, “Don’t EVER LET ME DO THAT AGAIN!!”  and, “It was SO WINDY and IT RAINED!”  and “Everything HURTS!”  and, “If I EVER even TALK about doing this again, take a baseball bat to my bike!”   (NOTE: It’s a carbon frame.  The whole bike would shatter.  This was our one moment of complete unity throughout the day.)

He looked like he was about to collapse and he needed to eat so I went back for the kids and we finally found him sitting on an ant hill with his back against a wall and his eyes closed, oblivious to the world.  He eventually laid down next to the ants and fell asleep for about two hours.  In the meantime, I found a quiet corner to plant, water and feed my kids and spent the rest of the time running back and forth between Bill, Mary and my kids.  The sun drifted West, more-half racers arrived, it got colder and more windy.  Bill finally woke up and we all went to wait for Casey at the finish line.

This is the transition site/island with the Battleship in the background.
Besides the twice daily flooding, the island we were on is bordered by the Cape Fear River.  There were no fences around the edge, just a few rocks and then a drop off into the water.  The finish line was on the outside of the island and every few minutes a child would dash off toward the river.  We almost missed Casey coming in.  He finished in 3 hours, 10 minutes and he was the first full Iron Man racer to cross the finish line.  I have to say, it was awesome to watch OUR GUY run into the tape.  He was great though.  He didn’t break it.  Because he was a relay runner he gave the tape back to the officials so the lunatic-freak-Iron-Man who actually did the race all by himself could break it.  He arrived 18 seconds after Casey, having done the swim, bike and run all by himself in essentially the same amount of time it took our team to do it as a relay.  Knowing how much time, training and emotional effort Bill and his friends had put into this as a relay, all I could think was, “that man is either single, or he is about to be.” 

In fact, our marriage was in greater and greater jeopardy with each passing moment.  Bill had gone to sit with Casey in the “warming tent” –for athletes only.  It was still cold, still windy, the kids were still tired, still hungry and starting to implode.  I finally put my head in the warming tent and hollered, “BILL, It’s TIME!”  The lines for the water taxi were so long that we decided to risk it and walk to the trolley/bus stops, which turned out to be half a mile away.   I figured out later that I carried Ruslan over three miles by the end of the day.  We have a wheel chair, but with all Bill’s gear and the kids stuff, we didn’t really have room.  Plus, even if we’d taken it, there was no way we could have gotten it on the water taxi, nor moved on the grass.  Ruslan could not maneuver through the crowd in his walker and that left me carrying him.  Usually there is only one transition area and parking nearby so we didn’t expect this to be an issue.   This race was just not set up for the handicapped.

We got back to the hotel about 8pm.  My arms and back were killing me.  I hadn’t had a decent meal all day and I was up to my ears in whining/bickering/tattling.  To make matters worse, there was no use complaining because Bill had a worse day than me.  He kept asking why I was so quiet and I kept telling him, “I’m just wiped out.  I don’t want to talk about it.  I’m done.” Then I finally quit saying anything and hid under my covers in a fetal position, hugging the heating pad, and debating about what form of penance I was going to inflict on Bill, while he finished putting the kids to bed.  I decided I want him to stand in a wind tunnel for nine hours, in two inches of cold water, and every three minutes I’m going to send in whiny children to peck at him with pencil erasers and half-eaten pieces of cold pizza. 

By the next day, Bill had gone from, “I’m NEVER doing that again!” to “If we do this again…” and half way home I noticed he was saying, “The next time we do this…”  which morphed into, "The next time we do this, you need to drive ahead with the kids and meet me at every aid station.  It would really help if I knew I was going to see you every twenty miles," silent nod of the head, "that would really help."

How does one say, "NO" to this?

Another factor: the first prize is really cool.  It’s a piece of teak wood flooring from the original deck of the battle ship. It's impossible to hold that wood in your hands without thinking of the men who walked on those boards, where they were, what they endured, who they were missing, and whether you'll meet them all someday in heaven.
This is the first place award.  Here is a link to some stuff about the ship:
About every three hours now, Bill's eyes will glaze over, he’ll get a sort of dreamy smile on his face and say,  “Marn,  I was the lead bike.  I was the lead bike for fifteen miles.  Everyone who saw me just went NUTS cheering.”  On the one hand, it’s really endearing.  On the other hand, we had a horrible day, we were both nearly collapsing from fatigue.  Everyone was tired, aching, sore and grumpy.  So, half the time I’m happy for him and the other half I want to ask, “Who cares if a bunch to total strangers are cheering for you?  They don’t even know you!  Besides, North Carolina went to Obama in ‘08, and half of those people cheering probably voted for John Edwards!” 

I keep waking up at night with visions of Will falling into the Cape Fear River and me jumping in, but not able to find him in the muddy, rushing water.  Then I roll over in bed and my hand or leg will brush up against Bills smoothly shaved legs.  God only knows how long it’s going to take to get those back to normal. 

…Freak.

Thursday, October 20, 2011

Who Hesitates...

So, Ruslan has to do a timeline for a school project.  All of my kids have had to do one in first grade.  They get a large sheet of paper and draw a horizontal line across the middle, then make little vertical dashes to indicate years, starting with the year they were born and ending with the present, marking each year with captions and photos.  We had to make a timeline last year for Sharon.  We adopted her when she was three.  I had some earlier photos of her from her foster mom so it wasn’t too bad, except for the impossible-to-miss fact that she never smiled, even once, in any of those early photos.   

Ruslan is eight years old, so I have to come up with eight photos; one photo and a caption for each year.   The problem is that I don’t have any photos of him younger than about five.   Who would think that something so innocent would cause so much trouble?  I don’t think the people who come up with these assignments ever adopted. 

As I was innocently digging through my photo pile, I came across these pictures:




It was a beautiful evening.  I had been putting our tomato plants in cages.  Reilly and Sharon took some of the leftover tomato cages and made “fashion art” out of them.  At first they were merely decorative, but eventually they came up with the cup-holder model, and the trend really caught on  (don’t try to understand, it’s art).  It was a really fun evening, just as school was winding down and we were all gearing up for summer vacation. 

Anyway, I was doing fine, until I noticed the date on those pictures: May 20th 2011.  The pictures were taken five months ago, the day before Bruce died.  It was such a contrast.  Here we were relaxing in the midst of a laid back, balmy spring evening.  Who could have guessed what was to come?  In a few hours, I would be on the phone with Maryann, hearing the news that Bruce was dead.  That one overwhelming loss was about to slam into our souls and then surround my every waking thought for the next several months.  All I kept thinking as I looked at those photos was, “God knew.  He knew that whole evening.  He knew what we were in for... in just a few short hours.”

And then I wondered, “Did He hesitate?” 

The first day of school for my kids was August 29th this year.  That morning, I had a difficult time waking them up, especially my daughter Reilly.  The little ones really don’t mind school and I homeschool the older ones, but Reilly is in fifth grade this year and school is hard for her.  Plus, summer for a ten year old… it’s just the ultimate kid-age; old enough to be a top dog in your little circle of friends, but still young enough to play hard and play well.

I sat at her bedside thinking, “now it’s summer but when I wake her up, summer will be over for her and the school year will begin.  As long as she’s sleeping, it’s still summer.  When she wakes up, summer ends.”  The weeks of sleeping late, staying home, playing with neighbors all day long, swimming, canoeing, and spontaneous roadtrips were about to end.  Enter: early mornings, peer pressure, school lunches, homework, and bedtimes.  I sat watching her sleep for ten full minutes, wondering why I hadn't found a way to stop time and trying, too late, to grab hold of those last few moments and keep her a child in the midst of summer vacation forever.  Of course, I failed.  I wanted her summer to go on for eternity, but I only managed to salvage ten minutes.

I finally mustered the will to wake her up.  After all, there is no stopping time and this was hardly a personal tragedy.  Still it was hard, because I love her so, to see that summer end.

So, I wondered as I was looking at those pictures whether God hesitated before He took Bruce away from Maryann, even if it was just for a second. 

I suppose it doesn’t matter since He still took Bruce in the end.  But all the same, I’d like to know. 

Friday, October 14, 2011

Regarding My RAD* Problem


 So, I began the draft for that last blog way back in the spring.   When I finally went to post it, I thought the grimace-filled hug was just a few weeks earlier, but later on, I realized it happened in April and we had been dwelling in that dreadful limbo for months.  I don’t want to come back now and write, “well, it’s not all THAT bad,” because it really has been very, very bad.  However, things have been improving. 

Over the summer, every time Bill and I talked about Ruslan (and financing that ejector seat/ vapor gun) Bill would say, “I just don’t like who I am when I’m around that kid.”  I thought for a while that this was our fault.  If we “don’t like who we are” when we are around Ruslan, I thought that the solution was for US to change.

However, we finally had a knock-down, drag-out fight about a week before that last post.  It had gotten to the point where Ruslan was so very annoying to everyone, all the time, that we were doing everything we could to keep him away from us.   NO ONE wanted to be near him.  To make matters worse, anytime Ruslan put one foot out of line, Bill was on him like a sledgehammer to a thumb tack.  My point was that, “it’s just really hard to be around that sort of extreme disciplining” and Bills point was, “yeah, but it WORKS.”  Finally, as we were talking it out I said, “this is just really hard because the ONLY WAY to really get through to Ruslan is to be mean, and I hate to be mean.”

Imagine a light bulb illuminated over my skull.  After going through the same time-consuming motions of explanation/reprimand, warning, time out, spankings.  I realized that maybe the answer was to understand that extreme discipline is the only thing that is helping him so I’d better learn to appreciate it.  Some people are going to be just horrified at what I am about to write (these people are welcome to take Ruslan off our hands).  Others (like my parents) are going to be reading this thinking, “Well, FINALLY!!”  In retrospect, I’m embarrassed that I spent SO MUCH TIME in the “talk it over” phase.  I started the draft of this blog back in APRIL and for months we’ve been in a sort of purgatory in which Ruslan has been requiring a huge amount of our time and attention with no measurable improvement.  In my defense the only thing I can say it that it’s hard to skip the explanation/verbal reprimand stage, even this late in the game because Ruslan is SUCH a blank slate. 

As late as August, I was having a hard time getting him to correctly wash his hands at bedtime.  I was ready to kill him because after EIGHT MONTHS of nightly hand washing, he would still just smear soap on the top of his hands and arms and then splash waster on them and decide he was done.  No matter how many times I made him do it over again properly, he would not scrub and rinse his hands, top and bottom unless I was on top of his every move.  Finally, in exasperation, I went into a long, detailed, (repetitive) explanation about hand-washing.  I explained that his hands were DIRTY after a day of playing (show him the dirt).  His arms were not dirty (show him the clean arms).  I explained that soap kills germs.  So, we put the soap on our hands ALL OVER our hands to kill the germs (repeat).  We scrub off the dirt.  We don’t have to wash our arms, but we do have to wash our hands (repeated at least five times and have him say it back to me).  We wash the top AND BOTTOM of our hands with soap to KILL THE GERMS and then we RINSE OFF THE SOAP AND THE DIRT SO WE NOW HAVE CLEAN HANDS  (also repeated at least five times in as many ways).   I was really annoyed with him at this point, but thank goodness he didn’t notice.  He just listened quietly the whole time and when I was done he looked at me in amazement and said, “I learn so much here.”    

This was one of those times when I just wanted to bang my head against the wall.  The only reason I am not at all skeptical that Ruslan really had no idea what he was doing or why he was doing it is because the whole Eastern block of Europe is living their life on that same level.  One of the things you notice when you live over there is that half the time they do anything, they are just copying the people next to them with absolutely ZERO understanding of what is going on.  They are not expected to understand.  They are just expected to DO.  It reminded me of the time we bought a screwdriver, only to have it stripped the first time we tried to use it.  As long as it LOOKS like a screwdriver, a Ukranian will think it’s adequate.   The idea that a tool might need to be capable of meaningful work seems lost on them. 

Therefore, I’m not sure if I can communicate it clearly, but it’s sort of a constant ….dance, trying to determine what Ruslan does and does not understand.   Sometimes, after an explanation, he will get it.  Other times we tell him the same thing over and over again with no improvement.  

Anyway, about a week before that last post, poor Bill was just about to go crazy every time he was in the same room with Ruslan and the rest of us were at about the same point.  So, after that I realized we were at yet another breaking point in which something HAD to be done about Ruslan’s behavior, I went to totally non-verbal discipline. 

The next day was the yogurt episode that I described earlier.  When Ruslan asked “why can’t I have more?” before I’d even had a chance to put any in his bowl, I just put down the yogurt without one word and took him straight to time out.  It feels mean at first, but I’m less annoyed because I’m not repeating myself over and over.   Ruslan knew exactly what he had done and really, I don’t think he’s complained about amounts since then and that was well over a week ago.

With the incessant talking, I now just wordlessly take him right to time out when he interrupts or talks out of turn.  It sounds horrible, and I feel horrible doing it, but it also works.

Thank God, Ruslan has been improving.  Out of the behaviors on that list above, we have had at least a 75% improvement since we implemented the silent discipline program a few weeks ago.  

I realize though, that it is only dealing with the surface problem.  Like Simon and Garfunkle’s “Fighter,” the psychosis still remains.   After that last blog draft one mom wrote to me that, “what you're describing in your blog is everyday life in our house (and has been for the past 3 1/2 years) and for every other parent of a RAD* child.  Nothing you described is new, odd or isolated.”   She also sent me to an excellent web site on Reactive Attachment Disorder: www.radmom.info   The RAD page has a list of behaviors that perfectly describe Ruslan.  If you’re in the same boat, you’ll want to check it out.

Another mom wrote that her adopted daughter was the same way and she was diagnosed with PTSD (Post Traumatic Stress Disorder) and is on Zoloft for anxiety.  She has found it really helpful.  The PTSD is totally logical, since the kids were in horrible environments, starving (literally) and abused/neglected as a way of life.  I haven't put Ruslan on Zoloft (yet), but it has set me thinking…. You mean there’s a drug for this???  …Really???

* RAD is short for Reactive Attachment Disorder

Thursday, October 6, 2011

I Have Adult-Onset Reactive Attachment Disorder

So, a few people have been asking about Ruslan and I suppose it’s time to give the dreaded update.  We’ve been having a few problems with him.  I didn’t see how horrible things were until one day in April when Ruslan asked me for a hug in public.  After realizing there was no way out, I hugged him and …I’m afraid I was visibly grimacing the whole time.  There’s not much affection there.  I tried to smile (or at least not scowl), but I couldn’t pull it off.  …pitiful.  I faced the awful truth:  I just can’t stand to be around my kid.  Merely touching him makes me want to cringe.

I thought it was just me, but thank God Almighty, we had a few house guests over the summer and I’m so happy to tell you that after a few days, they couldn’t stand him either!  After just one afternoon together one adult blurted out, “What is WRONG with you??”  Another finally told him, “You HAVE to learn how and when to talk because people are NOT GOING TO PUT UP WITH YOU as you get older.”  A third told me, “WOW, I just can’t stand to be around Ruslan.  He’s really hard.”

Any other parent would probably be in tears over such comments about their children, but for me and Bill (who have been thinking along the same lines for months now), these words were very encouraging!  Now we could say with certainty, “It’s not US, it’s HIM!”  Such a blessing…

After the grimace-filled hug, I started to really pray that God would help me like my kid (or at least not dislike him), but it’s not working.  Behaviors that were charming when we first adopted him are now flat-out annoying.  We’ve conquered a few things:  the two hour meltdowns are now no longer than ten minutes tops and happen maybe twice a month vs. twice a day.  He’s totally potty trained, his English is coming along well, and he’s not hoarding any more.

On the downside, besides dealing with the ever-present behaviors that have been troublesome all along, he now has some new behaviors to replace those we conquered.  Here is a partial, current listing:

Incessant talking:  Horrible, and the better his English gets, the more he talks.  Compounding the problem is Ruslan’s ability to say ABSOLUTELY NOTHING in 100 words or more.  The best example of the emotional black hole that we are dealing with:  one day, Ruslan was trying to get my attention.  I was trying to talk to one of my other kids and Ruslan kept on with his Mom, Mom, MOM, etc. etc. until I threatened a spanking if he didn’t quiet down.  When I finally had time and said, “Ok, what is it Ruslan?”  He said, “Mom. Um….Mom….Mom…. um….Mom….There are two apples on the table." 

Whining/Complaining:  Ruslan was born dissatisfied.  If we give him one scoop of ice cream, he’ll ask why he doesn’t have two scoops.  If I comb my daughter’s hair, he’ll ask why I didn’t comb his.  Just this week, he asked for some yogurt and before I had even scooped any into his bowl, he said, “why can’t I have more?”  After a while, this just gets really old.  Compounding this problem is that his voice is a sort of high pitched, loud, nasal whine.  Every time he opens his mouth, the whole family reacts as though he’s run his nails across a chalkboard. 

Jealousy: If I give one of my kids a kiss or hug, Ruslan will want a hug, even if he’s on the other side of the room.  Since I have six kids, I’m just NOT going to give Ruslan a hug or kiss every time I give another kid affection.  I do give him hugs, but I have to hold his hands down and hug him back to front.  If I let him hug me back, it is AWFUL because he is never satisfied and will not LET GO.  This is partly due to the tight tone of his muscles, but not entirely.   He also has a disgusting desire to make out with anyone who hugs him front to front.  He closes his eyes and wants to really KISS people on the lips.  We tried to deal with this right away, but since he’s so stubborn, he keeps trying and the upshot is that no one will hug him properly nor kiss him at all anymore except me: one kiss at night on the forehead. 

Abuse:  About once a month, Ruslan gets away from me long enough to hurt/destroy whatever is handy and vulnerable.  The worst case of this was with Will.  One afternoon, I found Ruslan in the play room (just off the kitchen) with Will playing “surgery.”   Ruslan had found a flat head screwdriver and was scraping/digging it into Will’s flesh.  Will is so compliant, he just said, “ow,” quietly.  I was five feet away in the kitchen and I didn’t hear a thing.  Will ended up with about three deep scratches across his torso and another couple on his back.  Ruslan also cannot be left alone with the dog (hits), books (rips pages), paint (gets it everywhere), crayons (broke every one)  etc. etc. etc. 

Stubborn/Argumentative:  When he is given directions, Ruslan’s response (if tolerated) is to  say, “no,” then ask “why,” then argue, then complain.  He is so stubborn about this little routine that whenever I give him directions, I now add the Obligatory Warning.  It goes something like this, “Ruslan, Your job is to hang up your coat.  We are not going to talk about your job.  If you say ONE WORD before you get your coat on that peg, I will spank your bottom." 

Dependence:  Ruslan loves attention.  The easiest way to get attention is to remain dependent on everyone for everything.  He resists therapy and I am starting to think that beyond his dislike for change, he just doesn’t want to walk.  He still tries to combat crawl rather than crawl on all fours (necessary for brain development) or use his walker.  The idea of doing things by himself is so terrifying, he can’t handle it without shrieking.  So, for example, last week he was on a step that is about three inches off the ground.  He has gotten down from this step many times with his walker placed safely behind him, but last night, his walker was to the side.  He wanted me to move his walker but 1.  He could easily move it himself and 2. He could easily get down on his own regardless of the walker location.  So, I totally ignored him.  Rather than just get down, he had a tantrum that resulted in a time out in his room, then a spanking.  It really wasn’t over anything more than his stubborn insistence that he could not do something that we all knew full well he could do.  After he calmed down, I wordlessly put him right back onto the same step with the walker in the same position and he got down in two seconds.  Then I had him get down two more times, just to cement the point that he was capable.  The thing that is so infuriating is that while yes, there is a small list of things he simply can NOT do, he insists on making the list longer by pretending he is less capable in order to get attention and manipulate. 

Inappropriate Play:  Ruslan doesn’t know how to play.  His latest idea is to wait until the older kids are watching TV, then crawl over and whack one of them with a plastic sword. 

Revolting Table Manners:  Ruslan talks with his mouth full and chews with his mouth open.  This drives my husband and children crazy.  It is actually really disgusting if you are sitting across from him.  He is capable of chewing with his mouth closed, but you have to remind him.  I think part of the problem is that he breathes through his mouth.  He CAN breathe through his nose, and we practice often, but he has to really think about it.  This also gives him chronic bad breath (another reason he gets back to front hugs). 

Laughing: A new and currently ­­HUGE problem is Ruslan’s inappropriate laughter.  Any attention is so wonderful to him that even when he is getting reprimanded, he is excited and can’t help laughing.  It’s also a problem at school and it’s the worst problem with Bill, who cannot stand it when Ruslan laughs over being disciplined.  Ruslan is smart enough to know when he is being disciplined, but he is so needy that every bit of human contact is exciting.

As implied in the April hug story above, it so bad, I can't fake it anymore, even in public.  A few weeks ago, I took all the kids to Wal-mart (our favorite family outing) and Ruslan was trying get my attention and point out something else for me to buy.  With his blonde hair, contagious smile and pediatric walker, he can really pull at female heartstrings.  A woman came over to explain what he was saying.  I finished putting grapes into my plastic baggie, tied the knot and then said, “thank you, but really, I’m trying my best to ignore him right now.”  She gave me a stricken look and walked away.  Reilly who was at my elbow said, “I don’t think that was the right thing to say, Mom.”

I know it’s easy to read a blog entry like this and think, “ok, well, you could try this, or this, or this.”   We are open to suggestions but after ten months, we have probably already tried it.  I just don’t have the patience to list all our ideas and attempts.  We inevitably fall back to dealing with his behavior in the obvious ways but there's no denying that the bad behavior is still ONGOING.  He is just really, really stubborn and needy.  Eventually he is going to need counseling, but our schedule is so full with his therapies, medical appointments and upcoming surgery that it is just going to have to wait.  I am left acknowledging that the behaviors above come from an emotional deficit and then determine how to best meet it without going crazy.

I know I have love for him on some level since after all, we’re still here.  I well remember that if we had not adopted him, he would be in an institution, tied to his bed, 24/7 and probably losing his mind.  As bad as things are, I still couldn’t live with that alternative.  So, I force myself to hug him when he is behaving correctly and I stay away from him as much as I can during the rest of the day.

Sometime during my search for answers, I found a book review of The Power of the Powerless by Christopher de Vinck.  It’s about a family raising a profoundly disabled child (bedridden, nonverbal etc.).  The last line of the review states: “It’s hard not to notice that for all its championing of the disabled, this book doesn’t treat them as individuals so much as empty boxes in which the able-bodied can admire their own perceptions, insights and efforts at nobility."

My first thought was, “Fair enough, but even so, at least that family came out on top.  Being around Ruslan only makes me hate myself.”  My child has the ability to bring out the absolute worst in me (I hope it’s the worst anyway).

The only insight that has come out of caring for Ruslan lately came from Bill.  After he read this blog draft and pointed out that “Ruslan has made some progress” and “this is a really depressing blog entry,“ he also added, “remember, this is how God sees us.”  These three points are undeniably true.  Yes, Ruslan has made some progress.  And, yes, the situation is depressing.  Adoption is not all sweetness and light.  I’m certain I am not the only mother in the world to discover that humans are irritating.  It’s also true that I have a tendency to marinate in certain sinful behaviors.  Justice demands that I add this line acknowledging that I live in the same stubborn, depraved state as Ruslan, yet God forgives me.  There is hope for us in the long run, probably.

Saturday, September 17, 2011

There are Height Requirements for Roller Coasters

So, we went to Williamsburg last weekend.  Bill went because he was in a triathlon on Sunday morning and the kids and I went because the deal included spending Saturday at Busch Gardens (large, coiffed amusement park: www.buschgardens.com).

Let me just clarify here that I am not an opportunist …exclusively.  In other words, I did, in fact, adopt Ruslan and Will because I plan to love them and provide a better life for them.  It is NOT MY FAULT that America has decided to shower us with a few perks along the way (like handicapped parking) and you must agree it would be absurd to miss out on such obvious blessings.  Right?

Therefore, we deliberately planned to take the kids to Busch Gardens as soon as reasonably possible because they have a killer handicapped policy.  Get your hands on a purple "H" bracelet and you can walk right up to any ride through a side door and onto a seat just waiting for you and your friends.  A whole day at an amusement park without waiting in ANY LINES?  Who can resist?

My time had come.  We were lucky enough to have TWO handicapped kids with us and each child was good for four companions per ride.  I was so convinced we’d hit the Amusement Park Jackpot, I tried to talk Bill into hanging a “HANDICAPPED CHILD FOR RENT”  sign on the back of Ruslan’s wheelchair (we’re capitalists).  What I sort of forgot was that there are height restrictions.  My boys weren’t tall enough for the roller coasters.   In fact, every ride that was worth the price of Dramamine was only for people over 45 inches.

We had to switch out while one of us stayed behind with the little kids.  Ruslan clued in eventually and whenever we found a shady spot he would say, "time for another throw up ride mom?"  On the plus side, my older kids got to ride the roller coasters twice (once with me, once with Bill) and it really wasn’t crowded at all.  I don’t think we waited more than ten minutes for any one ride even without the handicapped bracelets (HINT:  Always, ALWAYS wait until after Labor Day to hit the parks because this is when the seasons passes end). 

As my luck would have it, every ride Ruslan and Will qualified for either involved massive amounts of water (the Log Run, the River Cruise, the Roman Rapids) or some sort of Sesame Street character (Elmo’s Castle, Oscar’s Whirly Worms—I am not making this up) or both.   Of course, the only rides we could do altogether as a family were the water rides.  We spent the day soaking wet.   I ditched my plans for that wheelchair sign and I’m now thinking I might make more money with a push cart, selling dry underwear. 

The highlight of the trip was watching the kids interact with Will.  When he first came, he learned two words right away; “car” and “green.”  He said these words all through December, January and February.  Then one day in March, I bumped into him in the kitchen.  I looked down at him and said (rhetorically), “where did you come from?”  and he said, “I was adopted, from Ukraine.”  After I picked myself up off the floor, I tried to get him talking some more but nothing else came out.  We were back to “green” and “car.”  Anyway, all that is to say, Will’s speech seems to come in spurts.  Every once in a while, he just comes out with full sentences, proper grammar and a healthy vocabulary. 

At the amusement park, the kids started calling him “Speckled Bob,” because he loves a song called “Speckled Frogs.”   At one point he turned to Reilly and said, “Hey Reilly, they call me Speckled Bob.  It’s hilarious!”  Well, what do you do with that?  If you’re my kids, you exploit it.  They spent the rest of the weekend trying to get Will to say things on command.  The most popular was, “These aren’t the droids you’re looking for,” with a nice wave of the hand.

Bill’s race was Sunday morning.  He exceeded his expectations and did so well that he was on cloud nine for about five hours after the race—until he viewed the overall results and realized that everyone else exceeded his expectations as well.  He only came in something like 34 out of 600 racers and was not part of the top three in his age group.  This means he didn’t get the celebratory mug/wineglass that we so desperately need and had to settle for the complimentary T-shirt/racers tote.  Pitiful.  How can I be expected to manage with such a provider?  He spent the next five hours shaking his head in silence.  As you might guess, I’m mortified to be married to someone so slow.  I told him he’d better shape up or I’m going to start wearing a paper bag over my head.  My only consolation: now that we realize what pitiful shape he’s in, we can take him to Busch Gardens, get him a handicapped bracelet and ride on something better than the Log Run without waiting in line. 

Monday, September 5, 2011

Sweet William

Vitals:  School has started, so I have more time to "blog," (not sure if that's officially a verb yet) about Will, who is coming along nicely and Ruslan, who is not.

Details:  My husband and I married when I was 25.  After after a slew of obstetrical tests, drugs and surgery, we finally had our first child when I was 31.  My obstetrician told me that I had a chance for one more baby if I had one right away, but after that I’d need another surgery to have more children.  So, we had a second child eighteen months later and (surprise) God threw in a third one eighteen months after that.  Despite being up to my neck in babies, we really thought about more kids but by this time I was 35 and we knew our chances of having a special needs child were increasing with each year.  We weren’t crazy about the idea of raising a special needs child. So, we quit trying. 

If anything good came from all those years of waiting, it was our realization that, as hard as it was as an adult to face each day with empty arms, it would be a hundred times harder as a CHILD to face each day alone, without a parent to greet me in the morning or tuck me into bed each night, knowing that there is not one person in all the world who truly loved me.  So, five months after our third child was born, we started paperwork on our first adoption.  Before the homestudy, we had to work through a list of about 75 different disabilities and check the ones we were willing to handle.   We told the adoption agency we would take anything except children who were mentally challenged or emotionally disturbed.  We thought, with three babies in the house, that we just couldn’t handle those limitations.  Two adoptions later, with five children (four still at home) those were still our criteria.  That’s why it’s so very ironic that we ended up with Will, who is mentally challenged and Ruslan, who is emotionally disturbed. 

I’ve already hinted at the extent to which Ruslan is driving us all ….away.  I’ll get around to writing it all out one of these days.  I suppose I keep putting it off because it’s so much easier to write about issues that are behind us;  i.e. “We had this problem but it’s solved now! See?”   But, to write about a problem that is ongoing is just much more emotionally taxing. 

Therefore, we’ll ignore Ruslan for now and focus on Will because Will, as it turns out, is just really nice to have around.  Bill and I are constantly surprised by how charming Will can be and commenting at what morons we were to think that we wouldn’t enjoy raising a mentally challenged child.  Will is adorable.  He is the child that you IMAGINE would come out of extreme poverty.  He is happy, he is grateful for everything that is put before him and he is loving. 

Will comes downstairs every morning with a smile on his face and he smiles all day long.   Even experiences that would normally be bad for most kids are wonderful for Will.  He’s been asking me lately, “Mom, can we go to the hospital?  Can I have surgery?”  A few days before school started, we took the kids to an open house so they could meet their teachers.  Most of my children were wallowing in sorrow but not Will.  Just as we were walking in the front door of the school Will started talking.  It took a minute for us to figure out that he was saying, “I’m …so …happy!,”  a sentence he kept repeating all evening until we left.  His summer school teacher told me that she noticed he was standing really still one day during free time.  She walked over to ask him if he was OK and he said, “Shhhh.  Music.”  He was standing next to her CD player, listening. 

­­­Will has the habit of answering, “yes” to every question that we ask him.  You know how two year-olds go through the, “no” phase?  Well, Will is stuck in the, “yes” phase.  If I ask him in the morning if he would like to wear his red shirt he’ll say, “yes” and very carefully nod, “yes.”   If, just out of curiosity, I then ask if he would like to wear his blue shirt, he’ll answer, “yes” again and nod with equal joy and conviction.  You might think this makes it hard to narrow down what to wear, but the truth is that he will be genuinely happy with either shirt.  The only time he will answer, “no” is if I hold up a shirt that he knows Ruslan would like to wear.  Then he’ll say, “no, that for Ruslan.”  How cute is that?

He reminds me of the queen in Perelandra (http://www.amazon.com/Perelandra-Space-Trilogy-Book-2/dp/074323491X/ref=ntt_at_ep_dpt_9) .  Since she lives in a sort of Eden, the earthling trying to teach her about evil has no reference point.  The best he can do is to say something like, “Well, suppose you want a banana, but you walk into the forest and all you can find is pears?“  The queen is shocked by the question and essentially answers, “why would I be dissatisfied with a delicious pear?”  That is Will.  He is happy with everything. 

Will is the last child left who will scream, “DADDY’S HOME!” and run to the door when he hears Bill in the driveway (the older kids are too cool).  The other night we went on a date and Will sat by the window and watched us drive away.  He was asleep when we came back so the next morning when I came downstairs, two kids were in the living room reading, and Will was back at the window seat, waiting for us to come up the driveway.   

We have a bunch of photos of Will with our friend Gabriel.  Will loves to look at pictures of them together.  The other morning he came up to me and said, “Mom, can you show me the pictures of Gabe holding me?  Can Gabe come to visit?  Because I miss him. Because he is nice.  Because I love him.”

So, now that he’s not starving, half blind, bewildered, lost in a sea of English and is wearing proper braces, most of the problems we had with him in the beginning are over.  He’s able to sit quietly and play and concentrate.  He gives us eye contact.  He loves kisses and hugs and stories.  He can share nicely.  He eats all his meals without complaining.  He’s potty trained and he gets along great with our other kids.  He’s really become quite popular.  Reilly and her girl friends ask him for hugs so frequently that he’s finally started to rebel (second instance of the word, “no”) and say, “NO HUGGIN!”

There are problems.  He still has the water obsession.  He still eats like a starving child, shoveling food into his mouth like he’ll never get enough and making a huge mess at most meals. He gets frustrated easily, which makes him cry.   Also, since he’s so goofy looking, I have realized that the people giving me that slightly condemning, knowing, look are probably familiar with Fetal Alcohol Syndrome and have connected all the dots at their disposal.  It’s not always easy to absorb.  Nor is the realization that there are serious limits to his grey matter.  He had learned enough letters to qualify as “age appropriate” when he started summer school in July, but he made no progress.  Now, he is in special classes with Ruslan. …Sadly, it’s just not there.

And so, I worry about his future.  What sort of jobs are available for charming, handsome kids with the IQ of a tulip?  I know, we thought about Hollywood, but I’m just not comfortable with the work load.  Therefore, we’re still encouraging him to say,  “hello and welcome to Wal-mart,” as much as possible.  It’s the best training I can think of to ensure that he has the necessary job skills for his adult life.