As usual on the seventh of each month we're over at Hopeful Parents! Go visit HP today while I work the art festival in Washington, Georgia where the best taxidermist has his shop right on the downtown square. He even takes American Express. I shit you not and have the pictures to prove it. Come back for more NaBloPoMo.
While scouring for an idea to write about today I thought I'd go back and check my files to see if there was some old piece I'd written that was forgotten, tucked away in that folder where good blog ideas don't get finished or just aren't fitting for that moment in time. Lucky me I found one!
It's little bittersweet since the coolness of autumn has arrived. I wrote this at the end of our family (and I mean extended family) vacation back in June. Those few days with my mom, brothers, nephew, and nieces are a treasured memory.
As you will read Blair, my youngest brother, and his tribe will be heading to England soon to begin work on his doctorate. It will require them being away for at least two years so that brief reunion back in June will have to serve as the first page of our family scrapbook. Also this entry is fitting since (at least in the United States) November is the time to reflect upon thankfulness. Hope you enjoy!
I’m writing this as we’re wrapping up a brief reunion with my brothers’ families. My youngest brother Blair, sister-in-law Lisa, and their four girls will be leaving for England later this summer for two years to earn his Doctorate in Divinities. Cameron and “Young” Cameron were here from Baton Rouge, Louisiana for the week. Despite recently cutting ties to a large law firm and finally setting up his own law practice, the middle brother and the lone nephew on my side of the family we’re able to hang out with the rest of us at my mom’s beach house on Kiawah Island, South Carolina. Unfortunately my wife (work), Cameron’s wife Sheri and my other niece and Godchild, Caroline (varsity cheerleading tryouts), weren’t able to attend even though the many phone calls over recent days let us know where their hearts were. I relate this information to you for two primary reasons, neither of which is to make any of you jealous that basically we leave for home today after a wonderful sun & fun-filled, sandy, relaxing beach vacation.
In the middle of what sometimes seemed like a three ring circus was the exceptional cousin, Ben. The Lion Tamer whether he knew it or not was the main focus of attention. In ring number one we had the Little Evie Act. The youngest of the Waddell clan entertained the crowd with antics only a 19-month-old toddler can muster. Misspoken words, dancing with abandon, and demands to return to her new “throne” (Ben’s wheelchair) kept the masses in stitches.
On the far side of the arena The Three Stooges (the three brothers) had children surfing in the waves, building sandcastles (okay, actually pig sculptures and barnyard critters), and generally making fools of themselves playing Pictionary’s Disney version. While much more rowdy and foolish nothing they did could compare to the magnetism of the center ring. The huge smiles, the gibberish sounding coos, the arms stretching for hugs - the other acts within this family circus just couldn’t compete. Young cousins and one big sister wrestling over time spent with The Lion Tamer made the Ring Master one happy grandma!
There is nothing more special than the unconditional love that exudes from Ben but the acceptance and understanding of those who love him most comes pretty close! We are very blessed to have the family that we have: mine and Joan’s. We’ve had tremendous support from so many friends over the past nine years but nothing compares to what is truly a constant in Ben’s life: family.
Ben had a dear friend come to visit today. Nurse Stacey hasn't been able to work too many hours with Ben recently but today was a day we'd been looking forward to since she was scheduled to take care of him. Stacey has been the only nurse to facilitate his desire to paint since Vickie took a new job.
On top of that another nurse (Tracy) came to orient (learn about Ben) so that she can possibly be a part of Ben's care giving team. Nothing can be more fun than to show off one's artistic abilities! He's obviously feeling much better because it showed in the return to his flirtatious jovial talkative personality.
Given that my last show of the year is this weekend, I have a full plate of "Ben paintings" waiting for me in the studio upon my return...including this newest one. Check back with us often as I complete some of Ben's masterpieces!
Working with his favorite color. Notice his head leaning toward the right. We suspect this is intentional posturing to use the right side of his brain - the creative side.
When Ben is painting he will pause for awhile, lean his head to the right, and think about the next few hand strokes he will be making. Once the decision has been made he begins talking almost incessantly pausing to laugh every once in awhile.
Ben paints using both hands. The fingers of his right hand will spread out while he pushes it using his left hand. Essentially his left hand is "holding the brush" which happens to be his right hand. Note the lack of paint on the back of Ben's left hand at the top of this entry and the accumulation of paint on the right side of his hand above.
Once again he becomes very animated. It was interesting to note that he put his hands toward his face only once today. If you recall in past creative sessions Ben would often put his paint-caked fingers in his mouth while he thought. This is an obvious sign (at least to us) that our son's cognitive abilities are continuing to expand.
Most likely only a few of you will understand what the title means and I will get to that in just a moment. Since many of you continue to inquire about Ben I'm happy to report that he finally had a fairly good day. He attended school and even participated in his therapy sessions. For the time being Motrin and Advil are our dear friends.
As with most ailments and problems associated with with our son, inevitably they boil down to a process of elimination. Since there are no noticeable breaks, fractures, or internal structural damage the theory now points to inflammation due to either his fall or the expected growth of his hip joints in an abnormal fashion.
Regardless this situation can actually turn into something very positive for Ben's quality of life. We know already that within the next few years he will have corrective surgery to eliminate the "windswept" look of his hip and pelvic region. Our sign to start preparing for this is when Ben shows increased pain or no tolerance for repositioning him in an effort to achieve a more comfortable sitting posture. The expectation was that this would occur in his early to mid teens; not when he was ten and currently not the Year of the Swine! So there are still plenty of worries for us.
Now you may have noticed that this happens to be the fourth day in a row that I've posted a blog entry. Considering that I've probably averaged one and a half posts a week in recent months dear reader may wonder what's going on. November has traditionally been National Blog Posting Month (hence the clever acronym in the title). I've always wanted to participate but felt a little too challenged to come up with a post for thirty straight days. Plus in recent years I've continued my show season well into the month of November which made the chances of achieving that goal improbable. Well it just happens that I will conclude my show season this weekend giving me roughly two or three entries to prepare ahead of time or finding a guest blogger willing to pinch hit for me in the next few days.
There is an actual website about this challenge but as of the moment I still haven't been given access and most likely won't be able to add A Work of Art to their blogroll. It honestly doesn't matter. The bottom line is that this is a personal challenge - not unlike someone taking up running or biking to participate in a race. Unless you are a professional there is no winner. Achieving a "personal best" is the victory.
So with that explanation I hope you'll visit often this month. My plan is to provide some interesting stories from this past art festival season, informative memories about Ben & Jessie, preparations for art shows in 2010, and the ever changing always unpredictable happenings surrounding Ben's family.
PS: If you are also participating in NaBloPoMo then let me know. Through out the month of November I will have a list of blog friends that accept the challenge so you can quickly check their link!
Down to Earth Mama
Finding Nemo was Ben's first theater experience. He enjoyed it until he finally dozed off about halfway through. When Cars came out we knew Ben would have to see it in person even though it was chancy knowing that when his senses are overloaded he has a tendency to shut down - as in close his eyes and go to another world. As it turned out Ben was more of our entertainment than the movie!
The hip issues are still there even though X-Rays tell us all is okay at the moment. Keeping a steady dose of Motrin rotating with Advil seems to keep him comfortable enough to go about business as usual. Since he sees his regular orthopedist next Friday we'll have to make some tough calls about school, therapies, and other activities until then.
For now enjoy Ben enjoying his most favorite possession: his HP Touch Smart Computer. One day our not-so-little boy will be able to thank Aunt Casey in person - at least that is a huge wish of ours...
This was a direct quote from Joan about 2 & a half hours ago. It was uttered dripping with sarcasm as she cleaned up a spot in the carpet after the cat hacked up a hairball in the doorway to our bedroom. Shortly before this Joan had led a queasy exhausted Jessie into our bedroom to take comfort from her dad after a night of almost throwing up. As Jess crawled into our bed my wife was careful to keep the mattress from spreading more waves of nausea over to me since I'd tossed and turned all night with my own stomach issues. At least someone or rather something had finally barfed.
A few minutes later Joan would greet Nurse Dee to explain why Ben looked like he'd been in a Saturday night bar brawl. Although Dee has proven to be a trusted care-giver of our son she is still fairly new to the family. If there was an inkling of an urge to pick up the phone and report Ben's parents to local authorities as child abusers Joan wanted to nip that in the bud right away.
Of course that conversation was followed by a discussion about the possibility that Ben injured his fragile hips in the Halloween Bungee Jump off the couch sans the bungee. After careful consideration of all the circumstances the conclusion was made to keep Ben home from school today and cancel therapy for tomorrow. Who knew a severely physically challenged child could be so clever as to participate in Extreme Sports?
And poor Joan: up with Jessie much of the night with zero help from hubby facing a day at the office meeting with auditors. Good times people, good times! In golf, players use the term "mulligan." If you're unfamiliar with the word it basically means "do over." Yank your first drive off the tee into the duck pond on 18? "Hey guys, I didn't get a chance to warm up so I'm gonna try that one again."
In an Andy Rooney-esque fashion I'd like to make a suggestion to God (or whatever Lords of the Universe you might choose to believe in): I think we all deserve a mulligan on Monday morning every now and then.
The last 24 hours haven't been the best Ben has had in quite a while. Late last night I gathered my boy into my arms on our sofa to spend the last waking moments of Halloween in a snuggle fest. When I got up to head off to bed I didn't expect Ben to try and follow me. He did.
You wouldn't think falling 30 inches on one's face would cause such a distressful mess but when you can't react to protect yourself from accidents you are open to all kinds of injuries. Both me and Joan are feeling awful for not being more alert.
Ben still had his glasses on and the inner corner made a ghastly looking gash next to his right eye. To add injury to insult we think Ben may have hurt his hip - a situation we had already been concerned about. Let me rephrase that: extremely concerned about.
There is a bunch on our collective plate at the moment and none of it is very tasty. I'll fill the blanks in over the next few days but our week may get busy due to this being the last show weekend of the year. Add to that agenda that I'd really like to participate in the annual blog fest of posting every day in November...I'd say it was a bad month to start.
I'll have much more to blog about tomorrow...when we feel better about Ben.
Today was the annual Boo in the School at the Washington Center. Each year the kids get to trick or treat around the hallways and enjoy a huge Halloween party just before they head home for the weekend. And each year at the party one student is chosen as having the Best Costume.
When Ben started attending his school we didn't make a big deal about Halloween. In fact I honestly don't recall if we even dressed him up for his first Washington Center All Hallows Eve experience. There was a good ominous reason for not liking this semi-holiday at that time which I will blog about later this weekend. But all that changed three years ago.
Ben's primary nurse in October 2007, Lisa Stamey, was bound and determined that Ben was going to win that Best Costume Award regardless of whether his parents participated in the fun (we didn't). After seeing the fabulous finished costume we knew that Lisa's design (created and built solely by her) would win by a landslide. We were wrong. Putting it bluntly, "We was robbed!" That year the judging took place before Ben arrived at school and even though we have to admit the winning entry was quite clever, Ben portraying Lightening McQueen was far superior (okay so maybe there's a tiny bit of bias on our part). Because of this monumental travesty of justice Ben's family and care-givers made a vow to avenge Lisa's loss! In fact we swore a sacred oath to hold onto that Best Costume Award as long as Ben attends the Washington Center!
So last Halloween Ben's two nurses, Vicki Robertson and Stacey Brophy, began scheming and planning weeks ahead. The costume had to be perfect - so perfect that the contest would be a smack-down of epic proportions; a weeping and gnashing of teeth sort of thing. Let's just say the gauntlet was dropped like Sumo wrestler falling out of a three story building. It wasn't even close.
Which brings us to today.
I'm not gloing to claim that my first attempt to defend our victory comes anywhere close to the previous two years. In fact my job was probably made much easier by last year's crushing landslide win. But like Lisa I was pretty much on my own until the very end. Thankfully Joan and Jessie came home from work & school respectively to help rescue me from my knotted mess of duct tape, cardboard, and Rustoleum paint. All in all it became a team effort including Ben's current nurse, Dee.
The result couldn't have been more pleasing! A happy Ben and another victory in the bag. So while I head up to McDonald's to share in Ben's award stash enjoy our ace Top Gun: Ben(nie) & the Jet!
Dee checks out Ben as he taxis onto the runway.
Our pilot goes through his pre-flight check making a special note not to read the blog from his laptop while flying. If you look closely you can see his headphones and microphone with which he keeps in touch with the tower. By the way, the red device front and center is called a Big Mac. It's a communication device for special needs kids. Basically you record a word or phrase and when the child presses the red button it plays it back. We recorded the intro of "Danger Zone," the Top Gun theme song. Evidently Ben liked it because he was way more interested in pressing that switch than trick or treating!
Nothing like jetting about your school too make someone laugh this much.
Bombs dropped from this aircraft can be quite lethal!
Ben's air base: the Washington Center Air Command.
You can see Ben's right hand about to slam back down on the Big Mac.
This Tom Cruise isn't into Scientology nor does he jump up and down on Oprah's couch.
Note the second pic in a row of Ben staring at the Big Mac. We're a little tired of Kenny Loggins at the moment.
Construction last evening. We've reached the part where we try to figure out how in the heck do we attach this to his wheelchair.
Ben was fascinated with the aluminum paint finish.
As I said it became a whole family effort. Jessie applies paint to the "decals."
Looking back over the past few weeks I realized that I haven't really blogged too much about Ben. When that happens it's generally a good thing. That means things have been rather uneventful and Ben is healthy. At the moment those two assumptions are mostly true.
Ben finally got to attend therapy today for the first time in as couple of weeks...and it showed. He is usually excited and energetic when he attends. Today was different. Not only has the weather turned crappy here (cold and rainy) which he obviously feels but both his usual therapists were not in attendance. The biggest reaction came when his left hip dislocated which for the first time caused him a great deal of pain (more on that in a couple of weeks).
Also school attendance has been almost non-existent this month for two reasons: having a touch of the "sickies" and unreliable nursing. That situation is still a freaking circus and it is putting a strain on our relationship (me and Joan). We've made several suggestions that have met deaf ears (obviously) and I have had it! Enter our new ally.
This afternoon Joan and I got to sit down with Ben's new Service Coordinator. This person is the state represented head coach so to speak for all of our son's needs - the position requires an understanding of government services, where the funding comes from, what are the actual needs of the family, and how to achieve the almost impossible task of making all of those things work together. After spending two and a half hours with her (definitely a record for this type of meeting) Joan and I agree we have found a true diamond in the rough!
Because of the sensitivity of some things discussed I cannot tell you a great deal. What I can say is that Marie is obviously a God-send and our nursing situation shouldn't be an issue very much longer. Some things we thought never possible just might become possible. Even better is that the position she took working for our county has been an obvious transitional job. For our new friend and ally, she wants it to be a permanent position! Awesome stuff!
One last thought: I get very teary-eyed looking at the above photo. That is my family! My apologies to folks who think otherwise but I have the most wonderful wife and greatest kids in the world! The picture was taken on Ben's birthday which fell on Challenge Day. They were so very kind as to bring that joy to me later in the evening by visiting Hendersonville, NC where I was attending a crappy show.
May our smiles make yours broader!
For the record that deer stag was not sporting a red nose on Saturday. It suddenly appeared early Sunday morning and he was not smiling. Rudolph pretty much sums up the feelings of the vendors participating in the 32nd Woolly Worm Festival.
This is the fifth year I've been doing outdoor art festivals and ultimately this season it seems I'm making up for all the weather situations I hear other artists tell me about. This year has definitely been the Year of Packing Up in the Rain. And to the growing list of bad weather weekends I can now add one selling art in the snow.
So as I finalize preparations for the Bluffton (SC) Seafood Festival near Hilton Head where temperatures are expected to reach 80 this weekend I'll share some shivering memories from Banner Elk.
Note all of the hay surrounding my booth. The two truck loads of hay bales went a long way toward drying up the park we were in.
By clicking the image you can get a closer look at the snow still left on mine and Charlie Smith's canopies.
Rug braider and great friend Peter Steidle hides his bourbon flask to acknowledge he hasn't frozen to death...yet.
And then the sun came out encouraging some very crazy folks to come out and race woolly worms.
Christy Buchanan is glad she stopped at Wal-Mart for those spiffy Zebra-striped gloves and scarf.
The eerie view of the fall foliage at peak color while Grandfather Mountain is covered in snow.
