A Work of Art: Raising Our Exceptional Son

A Morning Resolve

2011-04-24T08:40:00.002-05:00

What I am trying to do these days...each and every day...

I will try this day to live a simple, sincere and serene life, resisting promptly every thought of discontent, anxiety, discouragement, anger, envy, resentment, and self-seeking; cultivating cheerfulness, a noble character, charity, and the habit of holy silence; exercising economy in expenditure, generosity in giving, carefulness in conversation, diligence in appointed service, fidelity to every trust, and a childlike faith in my Higher Power.

In particular I will try to be faithful in those habits of prayer, work, study, play, physical exercise, eating, and sleep which I believe The Creator has shown me to be right. And as I cannot in my own strength do this, nor even with a hope of success attempt it, I look to thee, O Lord God.

Many, many thanks for Forward Movement for the wonderful daily meditations!

I have now embraced sobriety for 120 days (and counting). Happy Easter Sunday to everyone! We will be back soon...

Color Theory

2011-03-28T10:53:00.002-05:00

The irony of not updating our blog for going on six weeks is that for the first time in a long time I actually have something, or rather lots of things, to write about. And for a change it all feels so positive and worthy of sharing. It seems that each day a new realization occurs to me, a little nugget of enlightenment or just a funny little anecdote about Ben, and I can't wait to sit down to write about it. Except the ebb and flow of sober living attracts me so much that I move on to the next thought, word, or action and I lose the time to physically tap out words to express my little brainstorm.

After saying that I have to confess there have been many moments over the last month that I've spent in the eyes of some just "wasting time" with my kids in the evenings. That may or may not include curling up on the couch with one of them for a big drooly smoochfest, or a passionate game of whatever Wii sport Jessie chooses to kick my ass in, or just lounging between two sleepy souls with two sets of long legs entangled on my lap admiring the incredibleness that defines my two kids. 95 days ago Jessie and Ben couldn't count on that foot-rubbing guy to be anything close to sociable later on in the evenings, much less having their dad even awake or alert enough to notice the value of such profound moments - moments that some parents never will get back. Thank God I am no longer one of those.

In between those short snippets of pure joy have been visits with my two brothers - the two most responsible people for my sobriety - including a trip to Tampa, Florida for spring training baseball games; a fun day-long excursion to a NASCAR race with two of the folks financially involved with renovations to Ben's living space; watching Jessie learn and play softball; and the not-so-great annual allergy roller-coaster of March many of us endure here in the southern United States. The irony of ironies? Ben has been the healthiest of us all the past month or so!

Life is indeed good. I guess if I looked hard enough I could find something to complain about but it is just too much fun right now noticing all of the terrific stuff - the family, the friends, the music, the laughter, the smiles, the colors - surrounding me at the moment. There's an old almost forgotten trick one of my art mentors taught me a long time ago to help me break out of a rut or encourage creativity when the painting ideas have dried up. "Take out a couple of your favorite paints and put a few blobs of color on your palette," he says to me. "Close your eyes and smell the fragrance of those pigments and binders. Now put your hand on your palette making sure you get a good amount of paint between your fingers - rub 'em together like your breaking up a clod of dirt." Finally he tells me, "Now open your eyes and look at your hand. You have a choice. Are you gonna go wash your hands or do something better with all that paint stuck to your paw?"

More Dabs of Color: Character

2011-02-17T09:54:00.000-05:00

"What lies behind you and what lies in front of you, pales in comparison to what lies inside of you."

"Character is higher than intellect. A great soul will be strong to live as well as think."

"Do not go where the path may lead, go instead where there is no path and leave a trail."

"You cannot do a kindness too soon, for you never know how soon it will be too late."

"Make yourself necessary to somebody."

"To know even one life has breathed easier because you have lived. This is to have succeeded."

Ralph Waldo Emerson

Expressions of Color: Character

2011-02-15T13:07:00.000-05:00

"The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be."

"Take your duty, and be strong in it, as God will make you strong. The harder it is, the stronger in fact you will be. Understand, also, that the great question here is, not what you will get, but what you will become. The greatest wealth you can ever get will be in yourself. Take your burdens and troubles and losses and wrongs, if come they must and will, as your opportunity, knowing that God has girded you for greater things than these."

"It is not necessary for all men to be great in action. The greatest and sublimest power is often simple patience."

"Habits are to the soul what the veins and arteries are to the blood, the courses in which it moves."

Horace Bushnell

The Character of a Saturday

2011-02-12T21:24:00.000-05:00

In a few phrases or words: new softball glove...smoked ribs...a pink balloon to play with...breaking in a new glove...the smell of old & new leather...naps...Rocky Road with chocolate syrup & whipped cream...Dr. Pepper...spring-like weather...memories of youth...laughter...smiles...talking to a balloon...dance rehearsal...bare feet...looking through art show applications...acoustic guitar...soaking a sore elbow in hot water...mink oil...Fresca...camera...and great big hugs from two awesome kids!

Character Through Pain - Part 1

2011-02-09T17:58:00.000-05:00

So far I'm failing miserably in attempting to post every day during the month of February, yet I am still determined to make 28 posts for NaBloPoMo before National Bird Feeding Month is over. It's not a matter of having anything to write about - in fact I have a list that could easily spill over into Spring - the issue of time has been the stumbling block so far...sort of. I knew the beginning of the month would be busy - I just didn't prepare for the unexpected circumstance which should be an expectation as a parent of a child that routinely pulls something rather unexpected.

Long story short Ben has been having "mini" seizures for the past few weeks. We have seen this before and it genuinely typifies something positive - that Ben is very healthy. So healthy that he is growing beyond his current dose of anti-seizure medications hence the occasional tremor whenever he is startled or disturbed while he is asleep or fatigued. Given that our boy is now a pre-teen we knew it was time to visit the neurologist to match his dosage to his weight...preparation and expectation in harmony. What we didn't count on was my own personal clumsiness.

Sunday evening I trip over Ben's feeding tube yanking the entire device completely out of his stomach. What followed was a scene straight out of ER or House including lots of sweating, cursing, and a mad scramble for medical & cleaning supplies. I cannot describe the sound of Ben's voice nor have I have personally suffered the same injury but I can damn well guarantee that it it hurt like hell. The seizure that followed shortly thereafter was one of the worst our family (including Jessie) has ever witnessed. It finally ended when Joan had to administer Diastsat, something we really, really hated to do. Watching Ben "stoned" is almost as unpleasant as watching him in the throes of his convolsions.

Thankfully his neurology appointment was Monday and throughout the week the seizures reduced in frequency and intensity. But yours truly has been doing a terrific job of punishing myself for putting Ben through a difficult few days. I think you will forgive me for not being so timely with my NaBloPoMoing.

Walking With Character

2011-02-04T22:58:00.000-05:00

I have so very much to offer in regards to this month's theme yet time has not been on my side so far! That concept seems rather ridiculous since I've had plenty of time to write this winter. In fact I have been encouraged to write as much as I can after I joined AA and began working the 12 steps. There is a really, really good excuse though that has kept me from writing a great deal this week which I haven't blogged about just yet, but over the next few days expect some pictures and a terrific story.

Jessie's "mentor," the daughter of some dear friends who embodies all of those wonderful qualities mentioned in yesterday's post, has planned a wonderful fundraiser for our family. All of the proceeds are being donated to Diligent Hands, Gracious Hearts - the non-profit which is putting together all of the volunteers, supplies, and planning for the renovations needed for our home. Early tomorrow morning we will head to Clemson University for a 5K walk/run called Walk for the Waddells. The star of the event? None other than our beautiful talented son!

Since it's already late and we have a long day tomorrow I need to retire for the day very soon. However we really want to thank before hand Kindal Wessel (and all the Wessel family), Beta Beta Beta of Clemson, Swenson & Associates (and the rest of the Swenson clan), the Pynne family, the students & faculty of Clemson University, all of the friends and family who will braving the cold wind tomorrow, Diligent Hands Gracious Hearts, Todd Wilklow, Ellis Beddingfield, G1.6 Architects, and many other folks that I know I am forgetting at the moment.

I can't wait to tell everyone about the great day ahead of us tomorrow!

Behind Blue Eyes

2011-02-03T11:50:00.004-05:00

"People grow through experience if they meet life honestly and courageously. This is how character is built. "
Eleanor Roosevelt

I have stared intently into these pair of stunningly gorgeous eyes. Like perfect sapphires their radiance is like a magnet that draws attention to them - not selfishly just to gain audience but an attraction none the less that one cannot help acknowledging. Just like iridescent azure gemstones her orbs offer many facets to examine and consider.

Behind these blue eyes lies even more beauty. Not a vain quality even though her physical appearance is indeed quite alluring, but an attractiveness that embodies all that an artist, a poet, a composer, or writer would dearly love to explore. It is beauty not so easily defined since every creative individual has attempted to interpret such over the course of time. Only God has been able to most closely characterize this countenance through a sunrise over the ocean or the laughter of small children on a warm sunny day or the aromatic first blooms of gardenias in the summer.

Through those splendid windows to her soul the beholder will find within the heart purity, honesty, courage, intelligence, strength, joy, and the greatest of virtues: hopefulness, faithfulness, and enduring passionate love. Perhaps some of these attributes were inherited but most likely most of them have been earned while those brilliant eyes kept diligent watch over a younger sibling different from most. They are a badge of honor for a young lady of only 14 years who is deeply involved in the creation of a work of art that is our exception son and brother.

28 Days to Explore "Character"

2011-02-01T23:13:00.000-05:00

Most of my fellow bloggers are aware of a website dedicated to the most courageous and dedicated of all blog writers. NaBloPoMo originally came about as an encouragement for blogs participating in National Blog Posting Month which happens to be November (you can read about that here). These days bloggers can choose to participate any month of the year usually by writing about the suggested topic of of the folks at NaBloPoMo. I've actually participated before and found it quite difficult to expound on a specific topic much less make a blog entry for 30 or 31 straight days. However I do check there every now and then not only to find out the bravest of all fellow bloggers but to see if there might be a topic that would lend itself interesting enough for my exploration of it for four weeks or so.

The fact that the shortest month of the year has just begun was most definitely a factor in my decision to attempt one blog post (or more) per day over the next 28 Earth rotations. Of course the consideration that I am already adding daily entries to a 12-step journal also easily influenced my blogging conscience. But quite honestly the chosen topic for February 2011 was the determining element to make me actually want to write at length each day over the coming month.

The word "character" can mean so many things as the folks at NaBloPoMo point out. I could easily choose to either write about or write in the persona of a favorite television, cinema, or literary role. And I might do that at some point.

Another variation would allow me to tell you about some of the more "interesting" people I've known over the years. You can probably imagine some of the "characters" met along life's by-ways while I was a musician, traveling artist, painting contractor, alcoholic, fraternity brother, drama major - all terrific occupations for someone generally amused and entertained watching life pass by (and yes, I am most likely on the "character list" of the many friends I've made at those jobs). And indeed I sure would like to tell you about some of them.

But the definition that struck me was the use of the word character describing the integrity of an individual; specifically I was thinking of three people who happened to be sitting in the room with me at the time. In that sense I would also have to include several other people who have been a huge part of "raising our exceptional son." It is this particular facet of "character" that I am most interested in. If this is the perspective of character in which I am to explore I am certain that I can easily fill up 28 days of blog posts using Ben, Jessie, Joan, my mom, my brothers, my dad, my grandparents, and many very close friends as examples. All of them offer the kind of character of which I can only try to aspire to.

Chillin'

2011-01-25T22:10:00.001-05:00

For the record this is day number 32 of my latest attempt at sobriety. I will happily and gratefully admit that the first 30 days were much easier than I expected. Day 31? Not so much but I will get to that momentarily.

Because of the original theme of this blog I have been reluctant to write about my progress toward sobriety. After all this is essentially Ben's blog, chronicling his life's adventures and his interaction with the rest of the world. In that regards I can proudly say that our boy is truly thriving these days! At times in recent weeks it has been emotionally overwhelming given his good health, physical growth (think "weed"), and increased cognitive development. It seems that everyone involved with his care and support have taken notice of just how far Ben has advanced beyond those early limited expectations some folks predicted. For this we are quite thankful!

But as a friend pointed out that from the beginning I have always written quite honestly about the entire truthful representation of raising a child with special needs including the good, the bad, and the ugly. If I were to leave out how I've tried for so long to medicate my depression via alcohol then I would neglect a good portion of our family's story the last 11 years (perhaps even longer). And it seems I have quite a bit to write about since depression and anxiety run so rampant among parents of exceptional kids. How do we deal with it in a healthy way? I have no idea at the moment but I intend to find out.

Overall I am rather pleased with where I am along this 12-step journey. This to me is obviously a good omen as I reflect upon where I was at this point on two previous occasions. Attempt #1 may have lasted about 3 weeks way back in the spring of 2004 - long before I started this blog. Honestly I really don't recall much about it other than Joan and I were separated at the time. I do remember going to my first AA meetings and thinking "what the hell am I doing hanging around these bunch of drunks?" Evidently I also read some of the Big Book because I discovered some highlighted passages after I dusted off my copy last winter during Attempt #2.

That one lasted exactly 70 days. I know because I kept count...a close count. Knowing what I do now it was doomed to fail but in all honesty that was really the beginning of my sobriety. I slyly mentioned last year how I went to New Orleans and quit drinking, wondering comically how often that happens? In my heart I still believe that. It's just that it took nearly another year before I was absolutely convinced that my life had become completely unmanageable.

As I mentioned, things have been drastically different this time and there is a good reason for that - I have completely embraced the proven 12-step method of Alcoholics Anonymous. Praying to my Higher Power as I understand it has been a daily ritual, sometimes hourly. Attending meetings with those other "drunks" has been enlightening, educational, and even enjoyable! And of course the Big Book is never far from my hands. Like I said, it has almost been easy...until Day #31. So what happened yesterday that made me seriously consider heading off to the grocery store for a bottle wine?

Basically I didn't practice what I just preached. The day began with a unexpected doctor's visit for Jessie and before it was over we had discovered our downstairs heat pump to be completely shot....in the middle of winter...no heat within the area of the house Ben spends all of his time. In between there were no prayers, no quiet times, no reading - there was just me doing what I used to do a month ago: attempting to deal with and manipulate the outcome of events I had no control over. Thankfully my "new me" was smart enough to find an AA meeting ASAP and the attendance was well worth it. Yeah, there is a bit of a chill in the house but somehow we are managing with the help of a few electric heaters and a rediscovered Higher Power. And it doesn't hurt that I collected this for the effort...

The Courage to Change

2011-01-08T20:09:00.000-05:00

God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

It still makes me cringe just a bit in using the term "courage" in reference to my recovery from alcoholism. In general I reserve that word to define an individual wearing a uniform that signifies their commitment to protect and serve others - a military service person, a fireman, a law enforcement officer - those folks that lay their lives on the line when they punch the clock. Of course I don't have to look too far, across the room at this moment, to see a young man who I consider to be the bravest, most courageous person I've ever known. Instead the word I might be more comfortable with is perhaps determination...or tenacity...or resolved.

I'm halfway to getting my second chip: aluminum which signifies 30 days sober. Even though I made it 70 days last spring I never picked up that symbolic memento - mainly due to the fact that I had quit attending meetings by then. And that my friends defines an alcoholic in a nutshell. Unconvinced I really had a drinking problem (man, you should've heard some of the stories those drunks told!), I decided that whatever issues I needed to deal with I could do it myself. Notice all of the "I"s? So on day #71 a beer seemed to be a deserved reward for all that sober introspection over the previous two & a half months.

This is my third attempt at Alcoholics Anonymous but this is the first time I've quit drinking for myself. That may seem like a selfish comment but if you could see the big picture you'd know that my decision to work the 12 Steps as laid out in the Big Book of AA is one the smartest that I've not only made for my family but for myself as well. It has only been 15 days but I am already seeing and feeling the positive changes in my life. And this time I am not afraid to blog about it.

Recall that last winter I made this entry. Yeah, it was a somewhat brave thing to write in those early stages of "sobriety." The funny thing is that I recall cringing within a few days of posting it because I wasn't really certain I was an alcoholic even though so many unhealthy incidents, issues, and relationships indicated otherwise. And even though I failed to achieve sobriety last spring the seed was planted at that time due to the encouragement of both my brothers (Cameron & Blair, I am so thankful for you guys).

There is no doubt that I am very fortunate to be where I am at this stage of my life. I still have my family, my home, and my health. In the past few weeks I have met some folks who have lost all to their addiction. And I am most thankful that at the age of 48, it's not too late to change.

Artwork in a Bottle

2011-01-05T18:10:00.001-05:00

Over the holidays I was able to finally experiment with an idea that has been sitting on the creative back burner for quite some time now. Despite all of the clutter in my brain that I've been sorting through in recent days I am happy to report that more dust came off of these old wine bottles stored in our garage than the decorative idea that eventually got them into the studio.

I cannot say that this creation is entirely original. Most likely many of you have seen something similar in the past particularly if you've ever ventured into a cheesy craft show. There are plenty of bottle art projects and their knock-offs found in craft books and even on line these days. what makes mine (ours) different is my ability to paint on them.

The ultimate plan is to refrain from hot-gluing plastic or silk flowers to them and avoid the cheesy country craft look. Instead I anticipate using my folk and fine art influences to make something rather unique - a piece of art worthy of collecting. The goal is to employ the same whimsical, fun, colorful, expressive style of my paintings within the design of these Light Shine Soul Bottles...or rather...Soul Shine Light Bottles...or um...Soul Light Shine Bottles? Whatever. I think you get the picture!

The cool thing (as you will see) is that I'm getting a bit of help in the design of these Bottled Lights! Jessie and Ben have already been a terrific source of subject ideas; both have also gotten hands on experience working on them as well. Hopefully I will be able to carry a few with me each week once I begin the show season in March.

In the mean time please feel free to e-mail me if you have a particular design in mind. Keep in mind that I can do college teams as well as my typical fare of palm trees, cocktails, snow men, sky or landscapes, etc. E-mail me at benwaddell@bellsouth.net for pricing and orders.

Finished Palm Tree theme without the bow around the neck. Note the found objects attached to the cork (flip flops and sunglasses). I used a Barefoot wine bottle and kept the foot logo visible on the cork.

View of the lit bottle with all the room lights off.

Close-up of the decorated cork.

A not-so-frosty Snow Man adorns the front of this bottle. I used white lights for the interior of this one also (I forgot to get a "lit" picture before selling this guy).

A discarded earring made a nice addition to the cork. Several strands of different colored raffia along with a hemp wrap seemed like a fitting top piece to the neck.

I also used a strand of silver coated string to tie the "Dream" medallion to the bottle.

Here I help Ben start the painting process for one of his designs.

It didn't take him long to get the hang of it!

Jessie strings a set of lights into a bottle she helped design.

This is the finished bottle Jessie and I worked on together. We used the decor elements of her room to design the bottle. She has a variety of blues and lime greens in circular patterns throughout her window treatment and bedspread...

...so we added blue lights to her bottle! It really looks cool and serves as a subtle night light. If you are interested in having one of these based on the decor of an interior room then send me some pics and I'll get to work on it!

One Day at a Time

2010-12-31T18:46:00.002-05:00

I guess that's a pretty strange title for the final day of the first decade of the 21st century. Earlier today my Facebook status declared that the first ten years of the 2000s was collectively the worst 3648 days of my entire life and how much I was looking forward to the beginning of the "teens." Of course there were some wonderful moments, even entire 24 hour periods among the others that were some of the best of my life. Those little treasures just happened to be buried somewhere between the loss of our family's business, our entire savings, the accumulation of a mountain of debt, three Christmases spent in a hospital, the beginnings of middle age health problems, dealing with some significant marital issues, the death of my last living grandparent, and the loss of several other wonderful folks who contributed significant memories and meaning into our lives.

This measure of time that encompasses roughly one fifth of my life is now juxtaposed with the way I am encouraged to live the remainder of my days - one at a time. Three thousand six hundred forty eight versus today...or yesterday...or tomorrow. For some reason it seems quite odd and so very foreign to me to think, plan, and prepare in such a way. Daily. Hourly. Minute to minute.

Yet when I look at my life as a snapshot of this moment rather than the feature film version that I am used to it is very difficult to be unhappy. After shaking the Polaroid I take a close look. I see two healthy children who are happy. I see a mother and wife with a good job, a steady source of income, who is beloved by her family. I see a home that needs some repairs but still keeps its family warm and safe from the elements. The faces in the photograph indicate laughter, fun, security, love, and happiness. And then there is a father and husband who has recently made a huge life-changing decision. He looks at peace - hopeful even - expecting good things to come. In this picture I see what is actually there and not what should be there.

Perhaps this new way of dealing with life will be good for me. Maybe it will even help me deal with the ebb and flow of time in a healthier way than I have ever approached it. After all, there is no other path to achieve sobriety.

Starting Over

2010-12-29T15:26:00.004-05:00

This is an e-mail I sent my friend "Maggie, Dammit" earlier today. We both began a similar journey last winter but as you will read timing is sometimes everything:

Basically the subject speaks for itself. It's a long story that began in late January of this year but I had to wait until the time was right before deciding that I am indeed an alcoholic. I finally quit Christmas Day. My family thinks this was a wonderful present for them. The fact is that it will be the best present I will ever give myself.

The details of how I arrived at that moment, the one where an alcoholic finally decides he or she is too weary to continue being a slave, are not that important. For that I truly thank God because no one was injured, my family is still in tact, and I am still alive. What is important is the epiphany of realizing that were I to keep living within the insanity I would soon be dead. God made that perfectly clear to me on Christmas Eve. As I told my brothers, I now have a new appreciation of the Ebeneezer Scrooge story.

For now I have the Big Book at hand and meetings to attend. I met with a counselor today to begin the work of peeling away the layers of this onion which I shall call My Life. At the moment I'm not too fond of it but I think enough of what is left of it to salvage those layers in hopes that they will finally season the lives around me with something other than pungent and tearful.

Don't get me wrong! I am very happy and content with this decision which is a far cry from the previous two attempts to quit. For the first time I am not grieving over the absent bottle of wine. There are moments that I seem lost because that daily ritual must now be replaced with something more worthwhile. Instead I look forward to the freedom which my chemically altered mind cannot fathom that which I already have. So I live day to day now with simple goals. Don't drink. Go to a meeting. Read the Book. Say my prayers.

I hope this e-mail finds you well, my friend...

Love -

Bennie

Ben's Christmas List

2010-12-25T20:27:00.004-05:00

Sorry we've been away for awhile. As usual the holidays have been hectic with lots of going here and there and...well mostly to a doctor's office. For some reason it seemed like one of us was knocked off our feet each week of Advent with the most wicked of cold viruses - Ben even had it twice. Despite the amount of Lysol, Tylenol, Advil, NyQuil, DayQuil, Mucinex, and hand sanitizer used the past month we've maintained a fairly upbeat attitude about the Christmas season.

Indeed as this Holy Day approached and eventually unfolded I would think the entire family would agree that this has been the most fun we've had during the holidays in quite some time. It all culminated in our community experiencing the first white Christmas in quite some time. Although Joan and I were both alive the last time it happened (1963) we probably weren't soiling our diapers in excitement.

Now that Santa has parked his sleigh for another year and Rudolph & company are snacking on left-over carrots, we'd like to present Ben's "official" Christmas list for the upcoming year. So throw another log on the fire, warm up some more cocoa, and enjoy reading about some things that will most definitely make our son's eye twinkle.

Take time to hug a penguin, mainly one by the name of Mumbo. If an arctic bird is not available then instead Ben suggest a friend or loved one who might need it more. Otherwise he thinks you might want to consider a Pillow Pet.
Sitting next to a colorfully lit Christmas tree and singing to it is a good thing. It's better therapy than watching Dad set something on fire. As Buddy the Elf would say, "The best way to spread Christmas cheer is singing loud for all to hear."
Everyone should have a sister like Jessie. No one can open a present faster nor run out of excitement over opening the next one.
Riding in a wheelchair down a snow-covered wheelchair ramp is quite fun. For Mom? Not so much.
After observing Jessie and cousin Chandler, the best way to spend Christmas night after playing in the snow is watching Elf in front of a warm fire eating popcorn.
Having a finger full of mocha icing placed on your tongue is an excellent treat particularly if you have a feeding tube.
Be sure to give the nurses a really big smile - they know where to find the mocha icing.

A Good Cold Snap

2010-12-14T18:51:00.000-05:00

My apologies for not keeping updates available about our wonderfully healthy and beautiful son. If you follow us on Facebook this may seem like a strange statement given that Ben is about one week past the end of a very wicked cold virus. Let me explain so that you will better understand our "glee" in regards to this recent illness.

Ben was a pretty sick kid about this time two weeks ago. We knew it was bad because our boy ended up oxygen dependent for almost a week after it was all said and done. In the past (and I mean distant past - knock on wood) something like this would've put him in the hospital faster than a Danica Patrick pit stop. Add in the seven days of antibiotics on his sensitive stomach and we had the makings of a pre-Christmas reunion in the local Pediatric Intensive Care Unit.

Joan also picked up the same virus and has been miserable for about two weeks. Given her suffering it seems that Ben has come a long way in kicking ass when it comes to illnesses that keep him down! All the credit goes to Ben due to the determination he has in building strength via physical and occupational therapies. I promise to post a few recent videos and pictures very soon of him being more rowdy than this particular photograph. I just couldn't help myself because that kid is just so darn cute!

Please keep in mind that we are still selling our art. Ben has several pieces available that I have yet to photograph. Plus we have even more mini canvases available including some with flip-flops (which seem to be a popular theme again this year). There is still time to mail these but I will need your orders very soon! Please consider these as a gift for those that you love - as much as we could use the income we know many folks are hurting even more than us. If you need a gift for a loved one and cannot afford it we will gladly send you some of these to make the season brighter.

Scenes of the Season

2010-12-08T18:54:00.000-05:00

When Nurse Tracy has gone home the past few days Ben has chosen to sit in a position so that he can view the tree and our decorated mantelshelf at the same time. I've turned on Christmas carols for him. It has been a tremendous privilege to hear Ben sing smile, sing along, and just enjoy the beauty of our little spectacle. I will do my best to try and capture this on video but you know how much Ben hates the camera.

Go ahead. It's okay. I got teary-eyed when I took it and also when I uploaded it. It is so incredible how much Ben enjoys the simple pleasures of Christmas. He was so very excited to be a part of the decorating process this year.

After we decorated the tree this weekend I found two tired Angels needing some daddy-love. The pile of red hair in my lap is Jessie. I love being a father!

Some new mini canvases!

This is a 10" x 20" original on stretched canvas. Ready to hang!

Another new theme in the 10" x 20" size.

Please check previous posts for details or e-mail me at benwaddell@bellsouth.net.

A Time to Speak Out

2010-12-07T15:58:00.001-05:00

Long time readers of A work of Art know to find us on the seventh of every month over at Hopeful Parents. This month's column is certainly a dandy. In fact it maybe one of the most important posts I've made since joining there. If you are a special needs parent or care-giver you will definitely find it of interest.

We are still working on our mini canvases and a few other things as well. Be sure to check back (often) over the next few days.

How About Original Art for Christmas?

2010-11-28T18:52:00.000-05:00

More new mini canvases pictured with the easels!

Close-up of minis - one displayed on an easel.

We like the Cross, the Snowy Christmas Tree, and the Sea Turtle.

10" x 20" original on stretched canvas. This is a new theme too!

10" x 20" original on stretched canvas.

New theme - new color palette - and already SOLD!

Contact me at benwaddell@bellsouth.net for details.

More Mini Canvases!

2010-11-27T16:44:00.000-05:00

Here's a look at the first batch of this year's miniature canvases that I've turned out so far. Sorry they are a tad blurry - I missed my chance to capture these in daylight. Look for a few more photos tomorrow either here or on Facebook! Also you can click on each of the photos to get a closer look.

Once again they are $5 each but if you purchase five you can pick out a 6th one for free! I also have some miniature easels that you can display these on. Those are also $5 each. I'll have a picture of those tomorrow as well. E-mail me at benwaddell@bellsouth.net to order or for more information.

A Week of Thankfulness - The Blessing

2010-11-24T17:51:00.019-05:00

This Thanksgiving holiday with its blessings so grand
Should serve to remind us of the joys at hand
The friendships we treasure, our families dear
The love we've been given and shared, year to year
The food at our tables, where many have none
The dawn of each morning beneath the bright sun
The dreams that we carry; the warmth in our hearts
That bring us together when we are apart.

The walks by the lakeshore as stars light the sky
The joys in the children who quickly pass by
The stillness of nature, the comforts of home
Each blessing the greatest that could ever be known
The warm, pleasured scents from the kitchen, delight
Arousing the senses near the firelight
The wondrous decor of the season to come
Good tidings, best wishes for everyone.

The freedom we hold, so to live peacefully
The soldiers who serve us, so diligently
The air that we breathe, the flowers we grow
The brightness of spring, the coldness of snow
Our sons and daughters, our husbands and wives
And the furry creatures who capture our lives –
All are blessings we’re given to cherish, always
Yet, especially so on Thanksgiving Day.

Celebrate this time for the beauty abound
Be thankful for all of the blessings you've found
For in the end, blessed you will truly be –
A soul filled with love, peace and harmony
Happy Thanksgiving, my friends; I am blessed, indeed
I am thankful for the love you have shared, selflessly
May each road that you travel be paved with a smile
Have a wonderful holiday....enjoyed in style!

A Week of Thankfulness - Day 2

2010-11-23T18:23:00.010-05:00

Certain is it that there is no kind of affection so purely angelic as of a father to a daughter. In love to our wives there is desire; to our sons, ambition; but to our daughters there is something which there are no words to express. ~Joseph Addison

The father of a daughter is nothing but a high-class hostage. A father turns a stony face to his sons, berates them, shakes his antlers, paws the ground, snorts, runs them off into the underbrush, but when his daughter puts her arm over his shoulder and says, "Daddy, I need to ask you something," he is a pat of butter in a hot frying pan. ~Garrison Keillor

With Ben so ill this past Sunday evening, Joan and I decided she would keep him at home while Jessie and I attended my family's Thanksgiving dinner. I make a lot of jokes about my in-laws, in particular the way each holiday meal has to revolve around my father-in-law like celestial cranberry sauce would a big fat stuffed turkey sun. In reality I've found these events an opportunity for my family and more precisely, Jessie, to respect the traditions of her elders and hopefully one day, following suit, will create her own family customs that provide grounding and foundation for her own children. This was the case for my side of the family as well...until recent years.

What is left from my generation is a deeply fractured handful of leftovers. All of my grandparents are deceased. So is my father. Both of my brothers' families live 6 and 10 hours away respectively. What was an annual gathering of thankfulness has now become an occasional convention on dysfunctionality. In fact this was the first gathering of my local kin in two years. The core of "This House Divided" is basically my incredibly narrow-minded and bigoted Uncle William along with his daughter-in-law whose life is perfect in every way (she will be glad to remind you quite often). Some of you have probably wondered from time to time where I received my passionate liberal education in regards to politics and religion. That would be my mom. The combination of the three can be quite toxic.

So why am I telling you this in a blog post that from the outset looks like an ode to my daughter? Two years ago a family "thanksgiving" hosted by my mother concluded with phrases and threats along the lines of "you are no longer welcome in this house" - "don't worry, I will never step foot in this house again." It was a rather uncomfortable and ugly conclusion to what should have been a time of joyful reflection.

Late Sunday afternoon, once we decided Ben wasn't going, I told Jessie that she didn't have to go either knowing the images of that previous reunion was seared into her memory. "No Dad, I want to go with you...for you and Me-Ma." I couldn't have been more thrilled had she said, "Dad, I won't go on a date until you tell me to."

The night was rather uncomfortable and sure enough my racist uncle made an unsuccessful attempt over dinner to stir the pot by telling a rather crude joke about our President (within earshot of both of my middle-school aged 2nd cousins and Jessie). Although my mom didn't ignore it, she let him know how inappropriate it was.

Jessie and I took the earliest opportunity to leave - oh how I enjoyed the ride home! We held hands while I listened for the most part. We laughed and howled over some of the idiocy that had transpired the previous two hours. I couldn't help but think back to just a few years ago when I walked her home from school almost every day. For a few moments she was once again my little girl! Even though she has matured in so many ways within these middle school years, some things haven't. Particularly her ability to wrap her Dad's heart around her finger.

Honestly I have worried about my girl from time to time. I've worried about how much of her childhood has been stolen from her because of Ben's genetic disorder. It has been quite obvious to her family that she has matured mentally way beyond her years - something not uncommon for the siblings of exceptional children. I worry that she's missed so many opportunities to be a little girl that she will feel remorseful about it. And I worry that as her father, I'm not giving her enough daddy/daughter time because of so much daddy/Ben time.

I do know this: my Jessie absolutely adores her little brother and that her little brother feels the same. That just leaves me a pat of butter in a hot frying pan.

PS: for my Mom - I so admire you for standing up to William again and again. In no uncertain words, he's an asshole. I have no respect for him whatsoever. Jessie will tell you the same. As she said verbatim on the way home: "I have the coolest grandma in the world!" And you might want to check back later this week...

A Week of Thankfulness - Day 1

2010-11-22T16:36:00.001-05:00

He is a wise man who does not grieve for the things which he has not, but rejoices for those which he has.
-- Epictetus

When I thought up this idea (given that many folks on Facebook are posting all 30 days something they are thankful for, I wouldn't say it's a great one) of blogging each day the week of Thanksgiving, I didn't anticipate that it would begin with Ben coming down with a virus that currently has him teetering on the brink of a hospital stay. Given that visits these days to the Children's Hospital of Greenville, SC are as frequent as snow in the South, a thankful heart this does not easily make!

But even with the not-so-terrific situation we currently find ourselves in I cannot ignore the words written above by the Greek philosopher. Even though Epictetus believed all things were determined by fate he also believed we were responsible for our own actions and by not accepting our lot in life by doing the best we can under those circumstances, we would indeed bring suffering upon ourselves. What makes the above statement even more remarkable is that Epictetus was born a slave and somehow became crippled during his childhood. His philosophies continue to influence modern literature, acting, and psychology. In essence this lessor known Greek educator did not allow his outcome in life be determined by things he didn't have...like freedom and health!

In thinking about this further perhaps this is the perfect day to be thankful for having a son just like he his; with Pallister Killian Syndrome, compromised lungs and asthmatic tendencies, lacking muscle control and communication skills, needing 24/7 care by watchful and guarded eyes. This is what Ben is to most that meet him. But for those that spend any amount of time with him, Ben is nothing short of being a remarkable human being.

Ben is a fighter. He is determined and absolutely relentless in the pursuit of a healthier and more normal life for not only himself but for his family as well. He has not only beaten the odds, he has flat out lapped the field and quite literally kicked his "opponents'" ass!

Ben is courageous. Like all of his other PKS brothers and sisters (or any other exceptional child for that matter), he willfully faces daily challenges that would defeat many adults. Truly I have been awed by his strength on many, many occasions.

Ben is an artist. For those that are regular readers here you already know of his penchant for painting but Ben's gift goes well beyond that. He is the best of artists in that he not only attempts to interpret his world, he makes his world better by his work. That is not only illustrated via paint and colorful fingers but also through his charm, his smile, his touch, his unconditional love.

These are just a few obvious characteristics Ben has brought into our lives. To us he is not a broken person who we need to fix. To those of us that are privileged to spend a great deal of time with him, Ben was brought into our lives to fix what was broken inside of us. I have said many times that Ben is as close to God or Jesus as I will ever get in this life. I am so very thankful I have the opportunity to experience that gift any time I choose to.

The Mini Canvases Have Returned!

2010-11-16T17:04:00.000-05:00

Once again we are doing min-canvases for the gift-giving season! Currently we are taking pre-orders in a variety of themes including the "Peace, Love, and ?" series. Each one measures 2" x 3" and is an original painting on canvas! Also on order are miniature easels to display them on.

Give a gift of art this holiday season! I can personalize your canvas or let me know of another theme you might like. Some ideas include fish, ladies shoes, flip-flops, angels, Christian cross, Mr. Sunshine, Tiki faces, and cocktails.

I can attach a small bow to make a Christmas ornament or a magnet so you can display it on a refrigerator. Or display it on a small easel for just $5 more! If you work in one of those cubicle environments then hang it above your desk for a bright reminder of future vacations.

If your shopping for a teacher, a co-worker, or looking for a unique stocking stuffer a mini canvas would be perfect and affordable! The canvases are $5 each (plus shipping) - if you buy five I will throw in a sixth one for free! Also I have signed the back of each one.

To order or for more information e-mail me at benwaddell@bellsouth.net. The first ones will be ready to mail late next week. As always click on the images for a larger view.

The Most Amazing Random Act of Culture

2010-11-12T15:41:00.000-05:00

I think this speaks for itself. My prayer is that more of these will bring us all closer together.

Memories of The Peace Train!

2010-11-09T19:06:00.000-05:00

This puts Ben's costume even more into perspective. It was also cool to see Yusef Islam (Cat Stevens) be a part of Jon Stewart's "Rally to Restore Sanity" the next day! We feel that Ben is has a finger on the pulse of America each year as the family constructs his costume for Halloween.

Connecting at Hopeful Parents

2010-11-07T12:06:00.001-05:00

As always you can find us over at the Hopeful Parents website on the seventh of each month! Today me and Ben found a pretty cool article at CNN/Time and use it as a springboard for our post at HP. We discuss how painting helped us make connections with Ben and how exceptional children should help us make better connections with our fellow travelers in our personal life long journeys.

Also keep visiting Hopeful Parents during the month of November! All month long, Hopeful Parents is celebrating National Family Caregivers Month and National Blog Posting Month. If you are a special needs blogger you will have many chances to have your blog featured at HP! Check out my friend Christina's most recent update!

Peace Train!

2010-10-29T14:02:00.002-05:00

For the fourth October in a row the stakes were once again high. The pressure has been mounting for weeks now. The tension around here has been so great you could slice it with a knife!

"Boo in the School" took place earlier today at The Washington Center, Ben's special needs school. Because the bar has been set so high by the previous three Halloween costumes, two of which were the creative expertise of Ben's nurses, the expectation now is for us to at least make an attempt to match the previous year's effort. Thankfully we didn't disappoint.

Thought and preparations actually began in earnest around the end of August. The construction included our entire family as well as Nurse Tracy and two of Jessie's closest friends. This past week was a flurry of cardboard, duct tape, paint, and the down-loading of four versions of the song "Peace Train." One of them is actually an "Africanized" arrangement in honor of Tracy's native South Africa.

So we are happy to report that for the third year in a row, Ben garnered the top prize at his school! Now the hard part begins: trying to figure out what we will do next year...

All aboard The Peace Train! Just for the day Tracy became a conductor rather than a nurse. Note the working light at the front of the train.

Our little engineer gets ready for the parade.

Our crew prepping for the judges. If you look closely you will see Jessie's iPod which was playing those Cat Stevens/Yusef Islam songs in sequence. Homage in a variety of bright colors to special peace-makers including Nelson Mandela, John Lennon, Jimi Hendrix, Martin Luther King Jr., and Bono. Although I painted the base coats of red and black Jessie and her friends (as you will see in another post this weekend) did all of the colorful decorations.

Siesta at the Wheel

2010-10-22T18:21:00.002-05:00

This is a photo taken earlier this week of our Chihuahua named Blaze. He is sound asleep. That may not be obvious unless you were within earshot of Greenville, South Carolina and could hear him snore.

Blaze is actually Ben's dog. If you are a long-time follower of our blog then you'd know that our family became a reluctant owner of this little felloow a few summers back. It's not that we didn't think he was cute and precious and snugly and...whatever, it's just that we are not so much...little dog people. Plus Chihuahuas sort of have a reputation of having a bit of a temper.

Personally I have no trouble with this dog. For the most part he's been pretty good around kids and he's pretty hilarious to observe on a regular basis (see above photo). We've also discovered two positive sides of owning a small dog: they eat less and therefore poop less.This is something the entire family appreciates now that Jessie has started helping with yard chores.

So you may be asking yourself why I'm bringing up this subject and posting this particular picture while the family is within the midst of some really wonderful folks and organizations helping us out at the moment. It is quite simple. Yours truly pretty much pulled a "Blaze Siesta" this weekend and nearly forgot an art festival I am supposed to attend. The really embarrassing part is this isn't the first time this situation has occurred (shut up Christy)!

While Blaze continues to moon our readers I will be busy washing clothes and packing for my trip to Bluffton, SC this weekend (and not next). And hopefully one day I'll learn how to use a calendar.

"This One Goes to Eleven!"

2010-10-18T14:06:00.001-05:00

With a tip of the cap to one of my favorite movies (This is Spinal Tap), we give you a few scenes from Ben's party Saturday evening. I'm so sorry that the pictures turned out so crappy (we used our cheap digital camcorder and the lighting wasn't so hot) but that didn't dampen the mood over the weekend!

Besides many of our family we also were thrilled to have two of three nurses who work with Ben on a regular basis. And to make it more fun Ben made friends with two of their own children. We also can't say enough about the staff at Joe's Crabshack. It's always a pleasurable experience but our waiter made it even more special for Ben (as you will soon see).

Dad, MeMa, Ben, and Nurse Tracy wait for more folks to arrive.

Ben poses between Nurse Julie and Nurse Tracy! Tracy goes to school with Ben three days a week. We generally see Julie on weekends and weeknights. Both have been incredibly accommodating in helping Joan the weekends I travel. They are also very dear to us just like all of Ben's care-givers. One funny incident: Ben did NOT want to sit with me instead choosing to sit between the ladies. Smart kid!

Tracy's youngest daughter Leah looked so very much like a younger version of Jessie!

Besides a good party this was what everybody looked forward to as well.

Ben's new buddy Jackson who is Julie's son.

My not-so-good impressionistic view from Ben's chair.

Diligent Hands, Gracious Hearts

2010-10-13T18:02:00.000-05:00

That won't be the last time you will hear that phrase within this blog. It is the name of the non-profit organization that has come to our rescue! Work has begun here on renovations that will positively impact not only Ben's livelihood and health but our living situation as a whole. There are many folks out there that I really want to go ahead and thank, give props to, bequest wonderful accolades to, etc. the problem is that I don't know exactly who many of them are at the moment.

As things move forward I really want to make our readers aware of some of the really, really good people who have wanted to help us all along but just didn't know how to. We also want to document this event so that we provide hope for other families here in the upstate of South Carolina and perhaps give other organizations in other states ideas on how to help meet the needs of those who need it. In a very strange but very cool way, this has become something of a massive art project! All of us involved are in the process of learning at the moment and essentially this could serve as a model for future families in our situation...but for now, allow us to let you see Ben's new wheelchair ramp!!!

This is Ben's first trip down his ramp! He goes to school three days a week via a bus and I was able to capture this moment early morning this past Friday. The railings have now been added so it not only meets our needs but construction codes as well!

Hopeful Parents and Baseball

2010-10-07T17:05:00.001-05:00

As always, on the 7th of each month you can find us over at Hopeful Parents. Today we talk about hopes, dreams, and tossing a stitched ball around the infield. Come on over and have a dog and a beer!

Birthday Weekend on River Street!

2010-10-06T18:27:00.004-05:00

The weekend didn't get off to a very good start. About an hour before I had planned to leave last Thursday we discovered that our camper had flooded due to an overnight storm. Our area of the country has been suffering from drought conditions for the past two months so that 10 percent chance of thunderstorms was pretty much ignored when we went to bed the night before.

After spending a few hours cleaning up and drying out the camper (and knowing we would be living out of a motel room over the weekend) we pulled Jessie out of school early and headed to Savannah. What followed over the next 48 hours or so was one of Ben's most memorable birthdays!

Joan finally got to meet some more of Ben's extended family. The Waterfront Association, the artists, and friends I have made over the past few years who have become aware of Ben's story over the years couldn't have been more accommodating and welcoming. The ultimate result was a memorable weekend and a promise from Joan that she will return often! Plus I had a great weekend of sales! Awesome doesn't begin to define the experience.

The booth looked mighty fine. It usually does on River Street!

The crowds were HUGE! This is the second most attended show on River Street - "slightly" behind St. Patrick's Day.

We got with the program and let Jessie fit in better.

My buddy Jonathan introduces Jessie to Peaches.

Joan finally warmed up to Peaches too. Jonathan has become a another good friend of mine...and our family.

For his birthday Ben meets our albino Burmese Python friend!

Trick Kelly and his family are some awesome folks. Here Trick begins his street performance on an 8-foot unicycle.

Part of Trick's act is escaping this straight-jacket wrapped in chains. The Kelly and Waddell families are now great friends! This was just another highlight of the weekend.

And Ben's "real" Savannah family. Butch, Erin, Allie, and Kenny. I wish I could truly thank them for the experience of last weekend but it would never be possible. Joan rarely allows me to share her thoughts or opinions here but Joan was very teary-eyed in attempting to thank Kenny via me. Neither one of us could ever express how wonderful you guys made our weekend!

Eleven

2010-09-29T18:25:00.000-05:00

In three days we will be celebrating Ben's 11th birthday. We are all very excited because we will be on River Street Saturday while I work Oktoberfest on the River. The event couldn't happen at a better place given so many folks down there have become like family to me. Kenny Hill, his partner Butch, their son Landy, Kenny's co-director Erin, and way too many artists to list here have made my visits to Savannah, Georgia so very special.

In addition to the family adventure the weather is supposed to cooperate with lower humidity than usual along with temperatures in the mid to high 70s. Ben thrives in those kind of conditions so we are planning to let him paint at the booth! If everything goes well we should return with lots of pictures, images, and stories.

In regards to our personal situation which includes several needed household repairs and modifications due mainly to Ben's growth I can report even better news. At this time we feel it is a little too early to give many details but our cry for help has been heard. We are so very grateful for friends, friends, of friends, and just plain good-hearted folks who have offered their love toward our family. For those of you behind the scenes (and you know who you are) we cannot ever thank you enough. For the most part all of you know the unconditional love Ben naturally exudes - we hope that his smiles and laughter are enough to sustain you.

Once things are in place I/we want to document what is getting ready to take place. I think this will be something important (recording/interviews/etc) as our family moves forward so that we can bring a little bit of hope to other families in similar circumstances. This is something I can personally put together but I don't have terrific expertise in doing so. Should you be interested in helping with this part of the story then please get in touch with me at benwaddell@bellsouth.net.

We look forward to bringing you more news about Ben's Eleventh Birthday very soon!

Segev

2010-09-23T17:28:00.001-05:00

While stewing over my own situation and spending too much time mulling over the garbage that has accumulated within my psyche recently I have forgotten what a great thing this Blogosphere has become. I have known it an avenue for much emotional support, a means of commerce, and needed form of interaction as Joan and I have become more and more isolated from the typical world. As per the usual aftermath of the experience, once I stop feeling sorry for myself long enough to take a deep breath a new discovery or more specifically a new encounter breathes fresh air into my weary soul. Very often that wisp of encouragement comes from the words found at one of those links in the left-hand column.

Within a few days two milestones will pass. A day after Ben's eleventh birthday this blog will reach its fourth anniversary. I look back upon those four trips around the sun and think about the families I have met. Folks have allowed me (literally at times) into their homes, their stories, their passions, their blessings, and of course their sorrows. At the same time those same folks have hopefully gained an occasional smile from gazing at Ben's infectious toothy grin or have learned about the hardships exceptional families endure or more importantly, have experienced a little bit of that unconditional love that we hold so dearly in our arms each day.

This past week I have "met" another father that may indeed be more tenacious than I in the care and well-being for his son. In something that is very common for those of us who write blogs, Eric left a comment after one of my entries. And like most of you I found this an opportunity to scamper off and invite myself to read the pages of Eric's blog, the chronicles of his personal journey. For some reason I consider this to be some sort of cosmic gift to commemorate the two upcoming dates.

The past few days I have made myself familiar with Eric's story and his obvious deep love for his son, Segev. I would highly encourage our regular readers to become followers of them as well. In the world of special needs parenting it is quite impossible to determine which family has the more difficult job of caring for their loved one - it is never an "apples to apples" comparison. But I do find Eric to be unusually courageous, a deep thinker, and a terrific writer. I found this post particularly inspirational and a good place to start. I plan to return to it often.

By the way, I chose the particular photo of Segev because Ben has the same version of Pluto which he is quite fond of. My hope is that Eric and I get to meet one day, break bread together, and share wonderful stories about our sons' good health.

Cat's Cradle

2010-09-22T17:02:00.002-05:00

A little over a week ago I made this entry here. The article also appeared as my monthly column over at Hopeful Parents, a gathering place for those of us parenting under special circumstances and those that love and support us.

From the beginning I realized that I had touched upon a tender and most likely a very painful subject due to two e-mails I received almost immediately after the post went live. What was weird is that there were virtually zero comments left by readers at the two websites. Even after my Facebook page picked up the article (not once but actually three times) there was absolutely nothing left in response...until the following arrived in my private messages.

Cat McCauley Labbe is a friend of mine from a few years back. In fact other than rekindling our friendship via Facebook we havne't laid eyes on each other since high school. Over the past year or so we have discovered many things about each other including the fact that we have (and still do) walk an almost identical path. After reading her thoughts I knew why there was so much silence.

I just read your beautiful post, Bennie, very heartfelt, and very true, as we have lived it firsthand. The only tidbit of knowledge I can add for you, and it is a tidbit...is that there is indeed a summit on Mt. Neverest. Everyone's is different, a different time and place on the climb, but trust me fully when I tell you that when you lay down your equipment, when the climb has gone as far as it can go, you will look back on the journey of a lifetime; one that very few familes are chosen to ever get to take.

Would you go if you knew what was ahead? Hell no! You'd be insane! You go because you are called and someone upstairs knows you can manage the climb. I hope you and Joan never have to lay down your equipment but even without the early loss of a special child, inevitably, the two of you will get older and unable to do as much as you do for Ben right now. So either way the journey will come to an end one day.

When it does, in spite of the heartbreak, crazy grief, helpless feelings, angry feelings....and they will all be there, you will also feel a since of accomplishment that no other life experience can or ever will give you. You will know that you did all you could do to make this very special life that Jesus Christ chose you and your wife to guide, protect, love, and nurture, has had a joyfull journey filled with unconditional love and acceptance. You will wonder what to do with yourselves and this was the point that we almost lost our 26 year marriage. What do we do now? We were lost.

After much prayer and contemplation and feeling like a failure, I realized that we had not failed at all. We took the climb. We gave it our all. We fell. We got hurt. We got banged up but we kept getting back up and going forward on the next leg of the hike. When you have fulfilled God's destiny for you to the best of your ability, and have accepted God's will for your precious child (whatever that may be) you will look back and know that you did indeed reach the summit - one that very few ever get to see because only a few are called by Him to see it. Those of us who have been called, are the luckiest parents in the world.

We spent ten years as virtual shut-ins too but the life lessons, the strength in adversity, the laughter, and the love that Eli graced us with for 16 years turned out to be the ultimate summit in life. Looking back on it now, I'd climb down and do it all over again.

My advice? Accept help - don't be ashamed to ask for help...after all, you can't expect to hog the whole blessing! I haven't seen you in years, but I LOVE YOU, and I mean that. I feel every word you write to the marrow of my bones. Ben's smile reminds me so much of Elijah. Eight years ago I would have sobbed seeing his picture. Now I am able to smile with him because I know that with a strong family, which he obviously has in abundance, his story will have a happy ending no matter what God intends that to be.

And Meanwhile Ben Continues to Paint

2010-09-18T19:24:00.006-05:00

This is called "Angel Fish." I started to work on this one (I count 5 strokes of my own) but Joan told me to let it go. After spending more time looking at it I now understand why. This is a 6" x 8" canvas panel.

SOLD

This is another family favorite. In the past I would've added my own interpretation. Once again we saw the obvious - a potted plant with flowers. Ben loves flowers! If you view the purple area as the "pot" then you will see it. This is an 8" x 10" canvas panel.

SOLD

"Lion-Heart" is an 8" x 10" canvas panel of Ben's. He had been watching several DVDs of lions along with jungle life before working on this. So...is there any question that my son is cognitive in regards to his surroundings? Once again $45 is the suggested price.

As always e-mail us at benwaddell@bellsouth.net if you want to purchase one!

Under Pressure

2010-09-16T18:34:00.004-05:00

Yesterday brought attention to a new issue in regards to health. For the first time in a very long time it has nothing to do with Ben. In our world that is awesome news. On a personal level it sucks.

Two days ago I began to experience heart palpitations, a slight headache, sensitivity to sunlight, and some very unusual pressure around my neck and shoulders. Because I've had anxiety issues before I just figured this was a mild reaction to stress - a miniature panic attack. It really wasn't much of a concern until early yesterday afternoon when it began to feel like my head my just pop off my shoulders at any moment.

I have no idea how or why I knew that my blood pressure was elevated - I just did. After consulting with Joan I decided to visit the local pharmacy and see exactly how hard my heart was working at the moment. By the way, given that we have what many consider to be a medically fragile child our house contains no less than four different oxygen tanks, a Pulse/O2 monitor, a concentrator/compressor set up that "squeezes" oxygen out of ordinary room air for when Ben is sick, an apnea monitor, two stethoscopes, a nebulizer machine, and other various accouterments for gauging and measuring our sons health yet we did not own until today a blood pressure cuff!

After slipping into the wooden chair and sliding my arm into the cuff I pushed the start button. This would be the first of about three dozen times over the next 4 or 5 hours that my upper left arm would feel like a mouse in a hungry python's cage. Today my arm feels like it could be used for one of those Fruit Roll-Up commercials.

That first reading of 157 over 104 didn't look too good. In fact the chart sitting in front of me told me that I was somewhere around Stage 2 of Hypertension. At this point I decided to sign in at the CVS Minute Clinic to see what a nurse practitioner would suggest I do now. After a couple of more readings it was difficult to determine if she was concerned or actually impressed. I do know that one's blood pressure is very much like golf in that lower is better. Par is 120 over 80. Perhaps she's a basketball fan? Two more checks gave us scores of 169/99 and 160/99. All joking aside the very nice nurse (who called to check on my today) told me to go immediately to a doctor. She actually scared the hell out of me when she suggested I might need a "transport" (EMS, ambulance, a firetruck would've been cooler).

Since I was only about a mile from home and I had no chest pains (then) I got to drive home so that Joan could cart me to the hospital about 3 minutes from our home. Because Ben's nurse had to check out once I arrived at the house he took the trip with us. Long story short, he was incredibly entertained that Dad was now the guinea pig and not him. I could've done without the laughing and smiling except it was my kid who has dealt with far more shit that me under medical care. Three hours later I was at home.

My blood pressure continued to rise throughout the afternoon and even with an IV beta blocker (Lopressor) my BP didn't return to normal. After a visit to my personal physician today I am now on a daily drug regimen along with changing my diet and beginning a more regular exercise routine. Even with the chest pains I experienced this morning I got the green light to travel to my show this weekend.

Despite the humor of the situation it truly did scare me. I am 48 years old. My dad passed away when he was 51 most likely from stress related issues. This has been a tremendous fear of mine since he died and particularly after we had Ben - to leave Joan with the care of our kids should I die unexpectedly is not acceptable so some life-changing disciplines are about to begin.

I am a thankful husband, father, son, and brother today. And I will remember this feeling for a long time...

Climbing Everest with a Boat Anchor II

2010-09-13T14:42:00.001-05:00

This is a reprint of my monthly column at Hopeful Parents last week.

Labor Day 2010 and a day off from work for my wife, we sat on our butts all afternoon watching a Discovery Channel series on TV. It was an incredibly beautiful bright sunny day with temperatures about 10 degrees cooler than normal (a wonderful break this time of year for those of us living in the Deep South); a perfect afternoon to hike, bike, picnic, swim, stroll, or cookout on a national holiday. Yet my wife and I lounged on the sofa with our son immersed in a story about a group of adventurers attempting to scale the highest peak in the world. There’s a reason I’m confessing this but I’ll get to that momentarily.

Several years ago I got the opportunity to see the legendary comedian Gallagher. He’s the short partially bald dude who has a penchant for smashing watermelons. Gallagher’s routine is always built around using a bunch of props - he always has this huge chest filled with all kinds of objects he uses as he tells jokes. The particular show I attended he discussed having kids. Looking out at the audience which included some young married couples he asked, “So any of you thinking about having kids?” The comedian turned around, reached down into the trunk, pulled out a rope and tied it around his waist. He then reached back into the container, picked another obviously heavy item, and threw it onto the floor. It was a boat anchor. “You want another kid after that?” Shortly afterward a second boat anchor lands on the stage.

The brilliant analogy really didn’t have its full impact upon me until the first time we carried our typical daughter to the mall. Jessie was just a few weeks old when mom and I began to get stir crazy. It was mid-winter so a little stroll around the block was out of the question. We got the bright idea to do the next best thing – take a stroll around the local indoor mall on a crappy winter Saturday. I can still remember how shot our nerves were after feeding and changing the diaper of a few-weeks-old baby while maneuvering a stroller carrying our child and other assorted accouterments around a crowded shopping arena. Due to that stressful experience I’m almost positive we didn’t carry Jessie out in public again until sometime around her second birthday.

Like everyone else I have a short list (actually it’s probably a little longer than most) of things I’d like to accomplish before I depart this life. Climbing to the top of Everest is not on it and never will be after watching the efforts of that 2006 expedition yesterday. Personally I’ve never considered or thought about the environment, conditions, dangers, and perils one might face to accomplish such a feat. Joan and I were absolutely blown away by the stories of those folks, some of whom paid tens of thousands of dollars to make an attempt at the summit. In the end only two (including the first double amputee) of the initial group of eleven made it to the top. Two of the group members had to abandon their climbs just a few hundred feet from their goal. On the final ascent the documentary showed several dead bodies of climbers who paid the ultimate price for the experience of standing atop Everest and in fact, the group encountered one dying climber from another expedition on their descent. All of the climbers returned home bearing scars and wounds from the adventure.

As much as we exceptional parents would like you to accept our kids into the world’s typical environment we are not so crazy to actually believe they are just like your kids. In fact we will go so far as to admit that we sure as hell would love for our children to be just like your child – healthy, whole, growing, learning, advancing, progressing toward a “normal” life. I mean really think about it for a moment…none of us wanted to be a part of this attempt to climb “Mount Neverest.” What sane set of parents sits around planning their pregnancy hoping for a broken baby who might be missing fingers, toes, teeth, bones, hair, brain matter, or the potential to remain a baby in an adult body?

There’s a huge difference between those climbers scaling Everest and those of us caring for an exceptional individual. Their expedition was not only desirable they were well-prepared for what they would most likely endure. Climbing Neverest is the complete opposite. In fact I’m not really certain Mount Neverest actually has a summit.

So what about those anchors we’re toting along as we battle frostbite and oxygen deprivation? That knowledge is the key in understanding the reason my wife and I sat on the couch yesterday watching a group of individuals nearly kill themselves trying to reach the top of the world. Gallagher ultimately fails to point out that those typical “anchors” eventually lighten up and completely dissipate in weight and density (at least most of the time). On the contrary exceptional “anchors” become larger – they actually become so heavy that at times they are impossible to move.

Earlier I described that first trip out of our home with Jessie. Looking back it really was a piece of cake particularly in contrast to Ben's first trip to the mall with wheelchair, oxygen tank, pulse/O2 monitor, feeding pump, and bag full of medical goodies in tow. For those politicians and appointed leaders who want to cut services for our special needs children, they should first be required to push an "ambulance" on a wheelchair around a crowded mall during Christmas season. And so on a beautiful late summer day it becomes easier to sit on the sofa watching television rather than make preparations and pack up the van just to carry Ben to the park.

So what’s my point? It can easily be summed up in one word: HELP! Special needs parents share yet another common thread. We cannot do this alone! For a long time (almost 11 years now) Joan and I thought otherwise. In recent weeks it has been made plainly clear that we had almost waited too long to ask others for aid. This was a very humbling and honestly humiliating discovery which nearly cost us our marriage but we were pleasantly surprised at how many of our friends, friends of friends, and in some cases complete strangers wanted to help. The problem? Most people don’t know how to help.

For the most part we've become something we swore we'd never become: shut-ins. We rarely go out and do things as a family any more. The dynamic of having a typical teenager and a soon-to-be special needs "tween" just makes the planning and/or physical challenge of a family outing exhausting. Other than a bit of shopping here and there the entire family spent exactly one evening out of the house this summer - an evening at our local minor league ball park.

Here's an idea. Churches and other non-profit organizations often tend to the needs of the elderly. Why not do the same for exceptional families? Some times all we need is just a helping hand. Most of the time we just need to discover that we still do actually have friends.

Climbing Everest with a Boat Anchor!

2010-09-07T15:42:00.000-05:00

Okay, so now I have your attention having made a very strange entry title. Since this is the seventh of the month you can find what I'm talking about in my monthly column over at Hopeful Parents. If you haven't joined us yet at HP then please follow the links and sign up. It's easy, free, informative, and just downright fun! Plus there are some really cool things happening behind the scenes which you will find out about in the next few weeks!

Also be sure to come back tomorrow to see some of Ben's newest paintings!

Biting Bullets

2010-09-01T15:21:00.001-05:00

For the most part we are doing better this week. The weekend brought many e-mails, phone calls, and private messages with ideas or just words of encouragement. Here are some random thoughts since my last entry...

Many, many thank yous to anyone and everyone who tried to get in touch with us. I promise you that all of them were read including the one thoughtless and selfish comment that I should've completely ignored. If I didn't personally say thank you consider this one big hug in appreciation.
The act of begging for help is an emotionally charged action that I would not wish upon anyone. If one is at the point of needing to ask for help you can bet that individual is already experiencing the absolute low of lows every way, shape, or form. In all honesty it was an exhausting weekend. Of course the spectrum of emotions was limited to those less desirable by most.
Over a phone call with a dear friend I was able to exactly describe the panic that surfaced recently. We have lived for over a decade now trying to take things one day at a time, sometimes even just an hour at a time before even considering the next. At some point early in Ben's life we were told that he would be lucky to survive to the age of ten. Now that there is so much more information available about Pallister-Killian Syndrome we know that truly isn't the case. The fact that Ben not only survived those ten years but is for the most part thriving, it's dawned on us that we are ill prepared in caring for Ben as we near his teenage and adult years. Of course developing on-going back troubles is a constant reminder that our son isn't so different form others after all.
There are some specific individuals that we REALLY want to thank who are currently going to bat for us and pulling strings, weight, and perhaps even the proverbial rabbit out of the hat. I hope to report soon on some positive things that might occur before the end of September. In the mean time Cher & Rick Austin, Billy & Lynn Dalton, Paul & Cheryl Swenson, SC State Senator Tom Davis and his staff - you all rock our world! You each deserve a big wet drooly kiss from Ben.
One issue that we are addressing and hope to raise awareness within our state is the limitation on Medicaid provisions to help families adapt their homes for a lifelong stay. The difference in how Ben is medically provided for versus home/transportation needs is like night and day. That fact was acknowledged by some folks within two state agencies responsible for the care of citizens like Ben via correspondence shared with us the past two days. The surprising discovery is how sympathetic these folks are about our plight! It was refreshing to see how much they really want to help but are limited due to very outdated information.
A suggestion from many of you was to apply for an Extreme Home Makeover via the television program. Joan actually looked into that a few years ago only to find out that there was a restriction that the home couldn't be on a major thoroughfare. We happen to live on a four-lane road with a median that is a main artery from Interstate 85 into the east side of Greenville, SC. Joan is actually going to revisit the website to see if that has changed. Regardless she plans on taking her Labor Day holiday to file a new application hoping they might make an exception.

That's pretty much it in a couple of bullets. I'm preparing for my trip to Savannah, Georgia this weekend by painting and packing. Ben started back to school today so it was rather lonely around here! I do miss that kid even if he's away just for a few hours. If anyone in the upstate of South Carolina have any friends with a pub or bar, my acoustic playing partner and I are ready to book some gigs. Meryl Hammet Cook and I have been practicing since the spring - we finally have enough material to do three sets easily (we're closing in on another set as well). Keep checking back for more news, hopefully the good variety.

Behind the Veil

2010-08-28T18:43:00.000-05:00

The last 48 hours around here haven't been so peachy. Of course one could make the argument that the last eleven years haven't been so great either. Evidently the lifting of the veil that revealed the reality of our lives was not unlike ripping the scab off a healing wound except our wound isn't getting any better. In fact it is infected, festering with depression, regret, anger, and most important, abandonment. There I said it. Can I go to sleep now? Will the stomach pain and diarrhea finally dissipate? Can I stop taking the anti-anxiety meds and anti-depressants yet? Maybe I have been asleep and this has actually been some awful bad dream that just won't end?

Maybe all these sobs and tears the last two days mean something? We actually have slept off and on lately only to feel exhausted shortly after waking. Food has no taste. Today brought a cool change in the weather inviting us to finally get some much needed yard work done. Instead Joan and I have taken turns napping while the other waits for the Imodium to kick in.

I do know that something has changed and it can't be good. Joan has always been our rock. I'm the one who is the usual emotional train wreck, who wears emotions on my sleeve, who curses God in some bi-polar rant only to realize in the end that to the rest of the world I look like 3-year-old pitching a tantrum. Joan? She is the calm, cool, collected thinker holding her cards close to the vest. Even when things are darkest - and trust me, there have been some Black Holes we've somehow maneuvered around - she forms the game plan and quietly orchestrates our way through that special-needs minefield with few tears and complaints.

Last night I saw something much different in my wife's face. Any couple whose been married for almost two decades can sense these things much less having one of the spouses trained to observe things as an artist. I recognized a sadness only witnessed one time before - the weekend of my father's untimely passing. The look radiated hopelessness, fatigue, misery, and despair. The thought of it still shakes me to the core.

So do you really want to know the worst part of all? The embarrassment of having to ask for help while finally admitting we can't fix "it." Have we failed? Most of you will kindly say no because you are kind people but that doesn't change how we feel. And then there's the blame game. Other than pointing the finger at God all we have left is ourselves.

I want my wife back. We want our lives back. We want the ultimate goal any parent wants and that is to provide the best for both of our kids. Life has not been a bowl of cherries for us and I mentioned two days ago that our marriage has been teetering on the brink of demise for a while. But I do love my wife more than she will ever know. Even though I made a promise before a God that I don't understand nor trust now, I made a lifelong promise to the woman who is truly my soul-mate. In my world a promise is something you keep no matter how difficult the circumstances. I just want her to be happy again.

Because some of you asked...

This is the (former) formal foyer into our home and the main access for Ben into the house. As you can see the floor is warped most likely due to moisture in the foundation combined with the unusual weight that daily makes its way across in some variety or form (wheelchair, lift, oxygen tanks, etc.).

This is the entry to Ben's bedroom which happens to be one of the smallest rooms in the house. Originally the room was our office. There is a coat closet in there without any lighting. The doorway happens to be right next the second floor stairway.

Turning to my right while standing on the warped floor we have our former living room which you will see is now half of The Ben Wing. Note the huge liquid oxygen tank on the left - one big reason why the floor is undulates.

Now standing just inside the living room doorway and looking toward the rear of the house. This used to be our dining room. We think this could eventually be Ben's actual bedroom or possibly some combination of therapy/living area for him. Note the lift on the left hand side - if you can't tell you will see another angle shortly. BTW, the television works - we just can't afford to hook it up.

Looking now toward the front of the house from our former dining room. The lift is now on the far right. It freaking weighs a ton! Here's the biggest issue within this area: carpet. That lift is a bitch to push on it. Plus it is stained like you wouldn't believe. Think about caring for a toddler for a decade on this floor.

Here's a peak at the damage the carpenter bees have done to our windows. All of them at the front of our home are or have been infested. What you are seeing is the sawdust left from the little bastards boring into exposed wood.

The same goes for the railing around the front porch. The brown patches are actually rust stains seeping up from old nails in the wood. Of course you will notice that the rail foundations are rotting now too.

Yeah, we've never seen vinyl siding buckle like this either. It started about three years ago and continues to get worse. Here's a hint: don't ever trust a Sherwin-Williams rep to suggest a paint applied upon a residential surface. As a former paint contractor I have a great deal of disdain for SW but this is personal. To be honest though we can't 100 percent blame the paint because...

...we have this old attic vent. When we replaced the roof due to hail damage a few years ago we had the opportunity to cut a ridge vent and get rid of this out-dated contraption. We couldn't afford it. We then had a choice to either replace the motor (which has rusted out) or the thermostat. We chose the motor since it was cheaper and of course the thermostat would be worthless without the motor. Evidently the motor once again died leaving a tremendous amount of heat that exited via the vinyl siding.

Here is the front door that we use to bring Ben into the house. His bedroom window is on the left and our old living room area is on the right. Sophie, Ben's feline friend is front and center. This is where we need the wheelchair ramp.

Back in the foyer, here is the downstairs "powder room." I am standing next to the stairway looking toward the rear of the house. The old living room is on the other side of the smallest room in the house.

As you can see there is hardly any room to add a handicapped accessible shower right now. Even though this is the logical place to put a bathroom we are talking HUGE money to change this from a powder room to a Ben-sized bathroom.

This is me with my boy on the way to bed! Yes, we know that he is huge, heavy, and beginning to become a health concern for me and Joan. But we love this child! He exudes love and we dare you tell us that we should change his course in life.

The Idea Part 2: A Community Challenge

2010-08-27T16:02:00.004-05:00

Regrets? Oh my Lord, yes! What I or Joan wouldn't give for one of us to go back 11 years just to have a short conversation with the younger version of us. Even though we thought differently at the time we were so naive, so unprepared.

The irony of the dates these two blog entries fell on is not lost upon us. CNN and just about every other news outlet is currently reminding Americans of what befell upon our Gulf coast neighbors 5 years ago this week. Even with the early warnings broadcast days, even weeks before Katrina made landfall, many folks didn't make quite enough provisions. They thought they were ready and for those first hours of the initial winds, rains, and tides most people were. It was the aftermath, dealing with the damage and unanticipated lifestyle changes that was so hard to comprehend, understand, and in some cases even impossible to live with.

This past January I traveled to New Orleans to visit my brother and nephew. Despite my team losing in the NFC Championship Game I had a marvelous time enjoying the sights and sounds of the French Quarter, the gluttonous visits to local eateries, and the warm love of family. Had I not been looking for them the scars of Hurricane Katrina would've been lost behind fresh paint and Mardis Gras decor. After breakfast Monday morning we had a few hours to waste before I had to be at the airport. Cameron asked, "Do you want to take a ferry ride...walk the French Quarter again?"
"How far is the Ninth Ward?"

"We have time but are you sure?"
Yes was the definitive answer because I thought I was prepared. I wasn't.

The next hour or so was fairly quiet except for the occasional question from the naive one.
"What are those numbers on the side of those houses?"
"The number of people who were supposed to be there."
"Why is there a mid-September date beside them?"
"That was when it was searched."
"Why did it take three weeks to search them?"
"Because until then they were all under water - most likely someone piloted a boat to get through here on that first search."

House after house, neighborhood after neighborhood. More numbers and more homes abandoned, still lying in ruin. This was almost five years later.

I thought of that winter car ride yesterday as I wrote. I thought of all the little things Joan and I used to take for granted. They seemed so important at the time, a necessary item on the checklist for the middle class couple. We had call-waiting so we wouldn't miss a business call...a parking pass right next to the stadium of our college football team...steaks on the grill every Saturday night...all the movie channels - not just HBO...an American Express card because membership has its privileges. You know what I'm talking about! Those needs that all of us deserve which bring us comfort because we worked so hard for them.

The rule of thumb used to be to have enough savings to pay your bills for six months just in case you lost your job. Oh we did better than that! At the time we had over year's salary stashed away! We had planned for this because when Bennie Junior came along we were going to become a one-income family with Mom staying at home ready to cart the kiddies to soccer every afternoon. But something happened on our way to The American Dream. Little did we know that A Perfect Storm was brewing.

These things I tell you because to get to the Truth, the real nitty-gritty, we must be willing to confess our own sins before we begin pointing fingers at others for their lack of compassion, consideration, or even understanding. And even if you eventually feel you've achieved enough atonement to raise that finger you know the old saying? Three more are pointing back at you. Yes, we could've been much more frugal. We could have done without many of those "needs." We really could've closed our business sooner rather than keep throwing money (more precisely credit card debt) on that corporate funeral pyre. Of course you know what they say about hindsight. Yet that isn't the entire picture - knowing we could've done a little bit better job would not have restored the landscape we remember before our personal Katrina.

Recently one of our gubernatorial candidates for governor was questioned by a group of special needs advocates about her stance in regards to possible cuts to special needs programs in next year's budgeting process. This lady was one of six out of over one hundred representatives voting to cut special needs funding this year so my friends weren't expecting a positive reply. Even funnier to me is that she is running on a campaign to promote "family values." Her response? "Nothing is off the table. In fact I'm of the opinion that non-profits and faith-based organizations should take on more of the expense rather than tax-payers."

My initial reaction (and pardon my French) was, WHAT THE F**K? Miss Family Values and Sarah "I am a special needs grandma" Palin-endorsed candidate wants to deny public funding for the most vulnerable of society? We're already barely eking out an existence here on bare bones and the Christian Right/Tea Party-supported candidate wants to yank even more of the floor from under us? I don't think that's what Jesus would do! And while pondering that phrase recently it dawned on me that Nikki Haley is at least partially right (no pun intended).

The Big Idea? Faith-based organizations should take on more responsibility in providing for the needs of the most vulnerable of society. I do believe that is what Jesus would do and have us do for Him. I think if most rabbis, imams, gurus, or any other religious leader thought about it they look more closely at the Christian parable that answers the question, "who is my neighbor?" But where Ms. Haley is dreadfully wrong is in the expectation that those non-profits and organizations would indeed bear that cross.

Next time you are driving about town take a look at the size and grandeur of some of the houses of worship. If you are a part of one of those congregations take note sometime of how many handicapped, special needs, or exceptional families are in attendance. Most if not all public places to worship your understanding of God have the space and accessibility to host such persons. My guess is that there aren't many there. Think about why that is for just a moment.

Now consider the amount earmarked for mission work within the budgets of these Godly organizations. Even with the economic constraints I am aware of some absolutely incredible large amounts given to foreign missions and even specifically dedicated ones such as hurricane relief funds in the wake of Katrina. Here's another thought. I personally know of three different local churches who recently sent youth groups on summer trips to either build or remodel homes for the poor or elderly in other counties and states. Several churches here in the upstate of South Carolina even send folks annually to foreign countries to distribute and administer much needed medical supplies. Are these projects worthy? Are they things that Jesus would do? Of course they are!

My personal opinion though is that this is a bit of not seeing the trees for the forest. The question I have once again is who is your neighbor? The beautiful people of Haiti are our neighbors. So are the former inhabitants of the Ninth Ward down in NOLA. But if you look a little closer to home you will discover some families who live just around the block from your home desperately needing help too. They literally are your neighbor.

Next summer when your church is planning that annual youth trip why not contact the Department of Special Needs in your area or that special needs school. I would even venture to guess that there just might be somebody within your own congregation who knows of a family needing help. Send those kids across town to build a wheelchair ramp, paint a house, remodel a bathroom, or to just mow the grass. My guess is that those are also things Jesus might do.

The Idea Part 1: Laying It on the Line

2010-08-26T16:47:00.006-05:00

"Life has made me very tired. I can't decide whether to keep going or not. Most everything sucks...and it has sucked my breath away."

That was my Facebook status last night before I went to bed. Short. Not so sweet. But directly to the point. And I spoke for both myself and Joan.

What I typed had followed up a very long conversation between my wife and I in assessing our present situation. We do this a lot these days, usually toward the end of every month when deciding where each and every precious dollar should be spent. It is an unpleasant and unwanted routine that too many American families have recently incorporated into their lives but one that special needs families generally have been familiar with for quite some time.

At lunch, after dealing with a smart-assed Subway cashier - something we really didn't need today or any day for that matter, I relayed some of the responses I received this morning which ranged from very kind words of consolation to the suggestion that I go see a doctor. Joan's reply? "They really have no idea, do they?"

That is the God-awful truth. Unless you have been dealt this same or similar deck of cards, one that is about 10 short of a full set and desperately missing a few face cards, you really don't have any idea. You have a sense of the frustrations, pains, heartaches, headaches, backaches, defeats, discouragements, disappointments, humiliations, disillusionment, and adversities of exceptional families but until you live with our particular challenges you will never have any real idea of how incredibly debilitating this life can be...or in our case, has become.

Now before you decide to move on to the next blog or check the next update on Facebook thinking "I think I've had enough of this whining," let me say that we were once just like most of you. Eleven years ago we were just an average ordinary middle class typical family. Two incomes provided us two vehicles, a couple of vacation weeks each year, a very well-kept lawn, weekends tailgating with friends at our Alma-mater, and most importantly money in the bank. Even when a mid-term ultrasound revealed there might be something unique about our second child nothing about it warned us that a personal natural disaster lay before us that would chew us up, swallow the leftovers, and then spit us back out scarred, scared, and shattered. To be honest, we really had no idea.

Within a short time we became a one income family with two-income bills. To make ends meet we depleted all of our savings (mostly in retirement investments - boy, did the IRS love us!) within the first few years of Ben's life. Our family business closed leaving me without a job with flexible hours and even more debt. Joan and I practically earned nursing degrees by learning how to manage our son's medical and physical care. Strangers living among us became a way of life. Time devoted to leisure activities disappeared. Life became measured in how quickly we dealt with the next impending crisis. And for the record we're still driving the same two vehicles.

Despite the bitching and moaning we are extremely thankful for three specific things: 1) Joan securing a very good job that allows us to purchase health insurance, 2) Ben very early in his life was able to qualify for a Medicaid waiver, and 3) so far we have been able to keep up our mortgage payments. Some of you who have followed our blog or my social media outlets for a long time know that for the most part I keep a fairly positive outlook on things. At the moment Ben is the healthiest he's ever been. Despite the lack of art festivals this summer we have (barely) made ends meet due in large part to the benevolence of one of my brothers and a few timely commissioned paintings. So what has changed that has led to darker storm-like clouds hovering about this blog and our spousal persona?

Even though #1 is still fairly secure, "thankful things" #2 & #3 are no longer certainties for us. Those two vehicles I mentioned are being nursed along with duct tape and sleight of hand. The siding on part of our house is in such bad shape that the insulation underneath is exposed to the elements. Carpenter bees have almost completely eaten through our 12 front wood windows. The entire house needs painting which I would gladly do if we could afford the paint. Essentially 11 years of neglected maintenance has raced on by us and overwhelmingly taken the checkered flag. But that's not the part that really upsets us.

The part that upsets us the most is the wake still left from the original disaster; the things that no family in our situation could prepare for or even anticipate. We are in desperate need of a wheelchair ramp to our home, a lift for one of our vans, remodeling of a bathroom to make it handicap accessible for Ben's basic hygiene, and new flooring in the main area of the home in which we spend the most time caring for our son. These are essential things that should be covered under his Medicaid waiver but are now on some waiting list that might be gotten to when the axe quits falling in South Carolina's state legislature. And now the worst part? Most certainly Ben's situation...our family's livelihood is not the worst case of neglect within our state nor most likely in our own community!

I do not write this to invite sympathy for our family. In fact this is not a plea for help personally. It is what it is. This "game" of chance has extracted a physical and emotional toll from all of us. And we are some of the lucky ones. Though it sometimes hangs by a thread our marriage is intact. If you are not familiar with the statistics, the last I checked the divorce rate of couples parenting a special needs child was over 80 percent. Should those parents lose that child the rate increases.

Despite Jessie's obvious maturity in comparison to other kids her age, there seems to be no negative emotional effects from having an exceptional brother. In many cases a sibling (or siblings) of a special child will need psychological counseling at some point before their adult years. The only down side that we know of is that our daughter is fully aware of the financial burden and somewhat aware of the emotional strain from caring for her brother.

Have I frightened you away yet? Are you still reading? Honest to God my intentions are not to impart guilt nor remorse. Of all the things we could accomplish by writing about our lives with Ben, awareness would top the list. And with awareness comes creativity, thought, and hopefully positive change. There is a higher purpose for writing what I did today but you must come back tomorrow to find out what it is. As you saw in the title, I have an idea....

Gone Fishin'

2010-08-22T18:51:00.003-05:00

Two weeks ago I wrote this for my regular column at Hopeful Parents. Because of the responses I've received via comments, e-mails, and even a couple of phone calls I felt it important enough to reprint my thoughts here. There are a couple of more "heavy" topics in the making and these are always the most difficult to express. Most blog readers want a quick and quite often humorous look at life. I do a lot of that (at least I hope) for the most part.

Writing about the hard stuff has never been easy. My first instinct is always the desire to laugh which drives my teenage daughter crazy whenever her friends visit. In my opinion the biggest reason to have children in the first place is the entertainment value alone. What wasn't a funny story about poopy diapers ten years ago can be quite hilarious now. In our world a story about poopy diapers or in the Ben's case - a lack of them - can mean an unexpected trip to the hospital and an improbable brush with death.

Over the next few weeks I'm going to blog about some things I've been hesitant to write about...until now. Ben is an incredible joy to be around and my wish is that each and every one of you can at least suck up some of that love he inevitably passes on to everyone he meets. But there is a side of exceptional parenting that is very difficult to comprehend, digest, accept, and in many cases live with. Please stick around to follow our journey...

It’s been awhile since I last wrote here at Hopeful Parents. My absence hasn’t been intentional – it’s just been one of those times where life just happens…or maybe hasn’t been happening enough to blog about it…or perhaps more precisely, feeling like blogging about it. Okay let me be just a little more honest with you. I’ve been depressed.

Depression is an illness I am very familiar with. In fact both my wife and I are so up to date with the latest new-fangled anti-depressants and anti-anxiety medications that we are surprised we are not called upon by pharmaceutical companies to provide potential patients of possible side effects. You know those advertisements – the ones where Wonder Drug returns you to “normal” life except for the insomnia, hot flashes, diarrhea, nausea, constipation, shortness of breath, hemorrhoids, uncontrollable flatulence, drooling, headaches, affectations for reptiles, dry lips, body odor, hair loss, joint pain, or an odd desire to set your neighbor’s kid on fire. Like so many of you, most likely all of you who visit Hopeful Parents, the realization that life will never be “normal” again sometimes weighs me down like a cement life-jacket as I float along the Sea of Life.

Don’t get me wrong, just like all of those drugs that keep my son so much healthier these days I am genuinely thankful that some doctor, scientist, or researcher discovered emotional pain relievers. It’s just that depression is another one of those consequences of exceptional living that I…we…don’t deserve. It wasn’t something we either intentionally earned or even wanted. It came with the “whole package.”

And here’s the worst part: of all the parents out there we are the ones expected to hold our shit together the most. God forbid any of us give up, walk away, toss in the towel, deciding there’s got to be somebody else or a social service agency better qualified/capable/deserving/undeserving/needing/willing/ loving/etc. to care for my kid. Oh that person becomes the ultimate pariah of society…the worst of the worst! So we continue letting our souls and spirits descend into a special compartment of Davey Jones’ Locker filled with lead waders and concrete flippers.

But there is the upside: we know how valuable or children are! We do know how much joy and love they bring into our lives. We know how often they bridge the gaps between races, religions, cultures and everything else that divides the rest of us. We sometimes even know of special gifts, incredible potential or talents, accomplishments never expected; diamonds within the coal. This is why we continue “the journey.”

I’ve been casting an un-baited hook for awhile now. The illness of depression makes you selfish which just adds more slag to that weight pulling you down. Recently I’ve run into a few folks that enjoy dropping a cane pole in the water now and then. They too have occasionally been using the wrong lures to reel in that “keeper” we all want to brag about. The one we take a picture of...that ends up as a happy news item...something we are darn well proud of. That is the beauty of having fishing buddies – in the end we are proud of how we contributed to that special catch – at least that has been my experience with those I love to cast with. That would be the little fishing community of Hopeful Parents.

Joan Speaks About T-Shirts & Blogging

2010-08-20T14:42:00.000-05:00

For the past month our family has been looking into printing tee shirts with an official "logo" design for our studio. Our vision is to eventually combine Ben's, Bennie's, and any other combination thereof into one virtual "shop" or website. The ultimate goal is to offer our artwork for sale while allowing Bennie (dad) to stay home more often with less travel and more importantly, less travel expenses!

While we are very pleased with Bennie's design which he completed on vacation last week, the up front investment for us to offer tee shirts, coffee mugs, and perhaps other collectibles ourselves is just way too much at this time. With the children starting back school we had to use our "cushion" on school supplies and a bunch of clothes (for the first time we think we spent more on Ben's attire than Jessie's). Perhaps later this fall we'll be able to dip our toes in the water and begin selling a few things personally.

We have been familiar with Cafe Press for about two years now but Bennie has been reluctant to use it for two reasons: the desire to make more point of purchase sales and that he (we) only receive about ten percent return on those items. If we are to satisfactorily explore this newest way of providing artwork to our customers it seems logical that now is the time at least give Cafe Press a chance. I have encouraged Bennie to offer not only some of his paintings but also some things of Ben's. After Bennie has a few successful fall shows we can then provide some opportunities for the family artists to personalize their wearable art!

You can explore our "store" by clicking on Ben's colorful hand at the upper left of the page. To be honest I was really surprised at how well the images turned out! I would like to have a few things myself but I'll wait until we return from the Savannah Labor Day Weekend show. If you are shopping for shirts Bennie would like me to encourage you to explore placing the images over several colors. Some of the paintings work well with lighter colors while others do better with darker backgrounds.

Also be sure to check the store often. We plan to expand it even more over the next few days and add even more images as Ben & Bennie complete their paintings. I don't often have the opportunity to write on the blog very often but I do read it almost every day. Now that I have the chance I want to thank all of you for the support and encouragement you have offered our family through the years. I'll be honest in saying I don't always agree 100 percent with my husband's opinions but I know he has a good heart and a passion for his family. I also know how much this blog and his art means to him. Thanks for loving the whole package including our two angels, Jessie & Ben!

What I Did on Vacation (by Ben)

2010-08-14T14:19:00.000-05:00

On deck and ready for a fabulous week!

Mom wasn't real happy with some of the neighbors.

Hand battered shrimp! A secret family recipe is a perfect match for the fresh local variety

(I'll bet if you ask Mom will tell you).

Mom says you have to use an electric skillet to fry them right.

This is how you make a picky 13-year-old eat a BIG meal!

Add some fresh (just raked that day) steamed oysters and we now have a seafood banquet!

I think I have the prettiest sister in the world!

Our favorite grill by the sea.

Grill, Daddy, Grill!

Carolina Gumbo! Grilled fish and sausage mixed with baked okra, squash, tomatoes, & onions. Add a side of purple hull peas and Silver Queen corn.

Don't forget a big fat fresh tomato. Hungry yet?

Sneaky Me-Ma! She walked up from the beach and made me laugh!

Hey Jessie, I had wonderful time. Did you?

But I think it's time for a nap...

So I can dream about returning to the sea!

Summer Lovin'

2010-07-25T18:22:00.003-05:00

This is our addition for the July 24th YouTube project that could become part of an independent film next year. It doesn't matter to us if he's in it or not because our boy loves painting. Wouldn't you agree?

"Different but Not Less"

2010-07-18T10:59:00.002-05:00

I loved that phrase used by the journalist near the end of the video. It perfectly describes how we parents of exceptional children feel. Ben is obviously different from a typical child - an exception.

But being an exception doesn't mean he should be prevented from working towards the same goals as a typical child. If you read more about Dalton you'll find that the state of New Jersey provides a means for him to reach for achievements that he couldn't obtain had he lived elsewhere. That is something we plan on exploring in the coming weeks and months here at A Work of Art - equal rights, equal entitlements, and better opportunities for our exceptional children to not just live but thrive.

Yes You Can!

2010-07-11T09:52:00.002-05:00

Just as we have found with Ben, art can do wonders for those facing challenges. Whether the challenge is difficult like the Alzheimer sufferers in this story or someone dealing with a mild case of depression by picking up a brush, pen, pencil, or even a camera, life becomes more tolerable. Personally I believe it to be no coincidence that children of elementary school age seem to be the happiest people on the planet. Generally they are engaged in some creative activity on a daily basis.

Just about every weekend I'm working a show someone will make the comment that they wish they could paint or that "I have no talent for this." My feeling is that maybe you don't have the talent to be a professional artist but you certainly have the talent to produce worthwhile art. As the folks at Nike would say just do it!

Leftovers from Southport

2010-07-10T15:32:00.008-05:00

Unfortunately my annual trip to Southport, North Carolina wasn't very good this year meaning that most likely it will no longer be on the schedule. I was able to barely break even just before the close of the third and final day. Although thankful that I didn't lose money next year I'd rather spend the holiday weekend with my family while it's 100 degrees and 100 percent humidity outdoors! Another thing that I won't miss is dealing with that nasty black dirt that covers Franklin Square.

Since my sales were down I brought home goodies for you art collectors to peruse. Each one of these acrylic paintings are 10" x 20" on canvas - ready to hang and no framing necessary. For the price of $75 one of these can be yours (I will even include the shipping which typically cost around $10 for these).

These have also been very good sellers for commission work. Just tell me the theme you'd like and the colors you would be interested in. Although these have been the most popular themes I've also added soccer balls, guitars, margaritas, and flowers. As always e-mail me at benwaddell@bellsouth.net if interested.

SOLD - I didn't even get to upload it! But I have one more of this theme completed and can do more.

The Wonder Years

2010-06-30T17:33:00.006-05:00

Even though Nurse Tracy has already spent the last six months or so working with Ben she's still learning and hearing about our son's first ten years with us. It's quite interesting to tell a person who spends so much time with your kid just how dramatic things have been at times. It's also kind of depressing when you recall decisions that were made that in the long run weren't very beneficial for him. Thankfully most of the time Ben's "team" has made the right choice.

Being the parent of someone like Ben is obviously difficult. Unlike typical family situations there are no parenting books, no medical growth charts, no checklists, no college courses, no school tests (actually those do exist and are an absolute waste of time, money, and paperwork), no absolutes to help you build a road map for the course of your offspring's life. Instead we generally shoot from the hip hoping to be quicker on the draw than our "enemy" whether it be an illness, an under-funded state program, or some bureaucratic asshole whose impeding the health and well-being of your child. In the mean time you hope and pray you don't miss and hit an innocent bystander or even worse: yourself, your son or daughter, or another family member.

Because I've neglected the blog for about the same length of time that Tracy has been with us most of you are unaware of just how well Ben is doing. Now that he is not in school Tracy has been letting Ben paint nearly every day. In discussions with his physical and occupational therapists the effort has definitely paid off! Tuesday is always therapy day. It's not just penciled in but written in Sharpie pen ink on each Tuesday until he returns to school. That is how much we value the work that he does with all of those wonderful individuals that have worked with our son through the years.

Ben is now able to work (very slowly) with a communication device, pointing to "yes and no answers" for the most part. This is mainly due to his artistic interest and the wonderful gift of another blogger, Casey of Moosh in Indy fame (Casey, I really really really want you to know what a wonderful thing you did for Ben - that Touch Screen has been a HUGE educational tool for him...HUGE!!!!). In fact his speech therapist was absolutely amazed this week to discover that Ben actually has a vocabulary that consists of the word "conversation." It is another long story to relate but very typical of the who, what, and why of living with Ben.

Getting back to those early years that I've been telling Tracy about, we certainly are enjoying the boy we have now versus the boy we had then. It's not that we ever loved him any less it's just that he can finally tell us how much he loves us.

A Father's Reflection

2010-06-25T18:10:00.006-05:00

I've had a good bit of time this week - probably way too much - to think about being father. We celebrated Fathers Day this past Sunday and I really wanted to blog about some of the good thoughts I had a few days ago; one of the few times I've been home on that particular date in recent years.

And even though as a family we've recently hit another rough patch in the Road of Life, I cannot take my mind off of a dear friend of ours who came by last Saturday to help me with an electrical problem. David tragically lost his eldest child last year.

When you are a young (younger in our case) married couple the idea of having children is somewhat an after thought. Obviously that is a goal for most couples but in this day and age other achievements like career, paying off college debt, saving money or home-buying take precedence. For most of us it isn't until we are staring at a tiny heartbeat on an ultrasound screen that the gravity of parenting becomes real. For someone who admittedly has never really "grown up" the thought of making certain another human being is fed, bathed , clothed, diapered, healthy, happy, and whole is still difficult to wrap my little brain around.

For those of us who have the privilege to go the extra distance of ensuring that human's little heart continues to beat and lungs take the next breath that particular weight sometimes becomes so great that it is difficult to believe you're not actually wearing concrete flippers in the the deep end of the pool.

And even though exceptional parenting continues to send wave after wave of crushing disappointments and hardships I wouldn't trade it for the world. I can honestly say that fathering Ben and Jessie Waddell have been the two greatest, most rewarding accomplishments I will ever achieve.

The Truth?

2010-06-23T19:34:00.004-05:00

In so many ways this has been a great day. I'll admit that I am a soccer (futbol...futball...whatever) nut. The instinct this afternoon was to write about the incredible USA win over Algeria. It was fun to have Jessie, Ben, and his South African nurse watch an epic end to the Group Stage of this year's World Cup. Yes indeed...I jumped upon our sofa...buried my face to hide tears of joy...and quickly ran Jessie to a dental appointment ten minutes after the match had ended.

All of my excitement about sports including the record breaking Wimbledon tennis match that took place today was washed away. Once again my elected leaders have failed me, my family, and the American public.

Recently I have been asked why I've remained so quiet on my blog. There has been much to tell but I had a temporary job as a 2010 Census Worker that roughly began at the end of April. In training I was instructed, if not threatened, to not reveal what I was doing publicly.

Over the course of a very short three weeks I made some allusions to my job on Facebook without revealing anything that would get me in trouble. Meanwhile I remained silent on our blog. This place is much more important to us than my Facebook page.

In the few short weeks of work that were supposed to be a bit more than promised I was exposed to government waste like none of you would believe. Seriously. You as a taxpayer would be SICK about what, how much, and how easy we could have bilked you. I didn't. But I do know of others who did.

I wanted a job in the next phase. A call a few weeks back told me I would be hired for the next phase by recommendation of my superiors. All was cool until I found out today that the training would be July 1st. WTF??? On an extended July 4th weekend this year, the Census Bureau has its training on July 1st? And the next phase will not start until July 11?

Personally I have given up several good shows in the Spring and Summer because I wanted the Census work. I have been lied to - I have been pressured just reach goals with the promise that I will receive more work. That was a HUGE lie.

I now have no source of income for the rest of the summer because of our elected assholes and their chosen douche bags. This is your government at work. You now have idiots finishing your census info. How does that make you feel? Are you pissed yet? I am.

Roanoke Report

2010-06-04T19:50:00.005-05:00

Currently I'm in a not-so-great motel room in Roanoke, Virginia attempting to entertain myself until bedtime. For some reason I have access to this incredibly fast internet service (chalk one up for finding a motel owned by a family from southeast Asia). Is there not a better time to blog? I think not!

Yes, that is my incredibly handsome son, Ben. I had the distinct pleasure of giving him a big goodbye kiss earlier today. If world leaders had to pass through the "official Ben exit" for a few days we'd have global peace within weeks, if not days. Here's one of my few (okay, MANY) confessions here: I cry every...and I mean EVERY...time I leave town for a show once I've told this child I have to leave for awhile. I used to do the same for Jessie used that she's a teenager? I won't continue that thought other than to say "not so much."

In the past week Jessie had her dance recital - (Memorial Day) weekend. Oh. My. God! My daughter is incredible! Honest to God, I've been wanting to blog about her with all kinds of digital photos and stuff but my wife has reminded me that there are really, really stupid creeps out there who should be our first explorers to Mars. She was....AWESOME!!!!!!!!!!!!! Talk about some salty stuff under the eyeballs?

For the record Ben is still painting - almost every day of the week. In fact both of his nurses, Tracy and Julie, are awesome ladies in allowing Ben to explore his creative side. Here's the problem: Ben is trying to tell us what he is painting when we cannot understand him. My feeling is that many people reading this shrug their heads and think, "oh, well, I've seen this type of behavior before."

Seriously, I'm not stupid. Okay...I'm not stupid some of the time but those that have worked with Ben KNOW exactly what I'm saying here. Ben is almost always dictating how he wants his paintings constructed. If you were around it you'd agree: at times this really blows my mind. Tracy, Vicki, Lisa, Julie and a host of other nurses know too. It's just so wonderful to be blessed with such creative kids!

Peace out.

New Paintings by Bennie

2010-06-03T12:18:00.005-05:00

This is a new color scheme for the cocktail them. I'm also currently working on a commission using these colors for a "Peace, Love, & Flip-Flops" painting.

"My M&Ms!" - I have a version of this on a canvas that I've been unable to sell but I've been asked plenty of times for a print. I now have one available after completing this one on a sheet of 16" x 20" canvas paper.

"Primitive Coast"
16" x 20" acrylic on canvas

I started "Hello Sports Fans!" right after returning from the NFC Championship game in New Orleans back in January. It was fun taking the Mardi Gras mask idea and tying with the passion many have for their favorite team.

"Fleur de Lis" was also inspired by that trip to New Orleans. This is also acrylic on 16" x 20" canvas.

A Portrait of the Artists as Spring Blooms

2010-05-03T14:59:00.012-05:00

As you can see, it can now be difficult catching a "still" when Ben is working. Note the blur of his right hand. We are all seeing a butterfly emerge in the orange paint from this view point.

The artist takes a moment to study his subject matter...also to taste the paint and make sure it's ready for application. I've mentioned this before but Ben has a tendency to lean his head to the right when he is concentrating. He is actually in this position watching TV as I'm typing this. This is one of the reasons we always turn his work at 90 degree angles to find what he is painting. To us it's a peculiar way to look at the world - in fact it can be down right uncomfortable for us to watch but to Ben it is quite normal.

One new thing Ben has figured out is how to mix and blend colors.

Jessie's Easter outfit. She picked it out with very little help from Mom. Something about this picture disturbs me...

Easter lunch with her cousins Chandler and Graham. Since Christmas, Graham has insisted that photos capture his "inner gangsta." Uncle Bennie keeps insisting he has too much mop top to be hip hop.

Jessie & BFF Olivia prove that white girls can jump...into a pool mid-April...

...which results into a scream still hovering somewhere near the ozone layer. Ever hear two young teenage girls scream? Dogs from two neighborhoods away are still barking.

Jessie and her BDFF (best dance friends forever), twin sisters Marissa and Cecily, about to hit the stage for one of their month-long competitions. It's funny how many "daughters" I now have. Evidently the stuff I do that embarrasses the heck out of Jessie makes me a cool dad in her friends' eyes. Joan says it's because the other dads wouldn't act like an idiot in front of just anybody.

And all this activity can exhaust two beautiful angels.

Ben's Impressions of Spring

2010-05-02T17:12:00.004-05:00

I cannot believe that once again it's been almost a month since I've blogged! It seems an apology is in order for almost every post in 2010 due to my lack of writing discipline. You'd think there isn't much happening in our lives. On the contrary we've all been as busy as the carpenter bees currently eating all of the front wooden windows of our house.

Along with painting almost every day Ben has attended school this spring much more regularly than ever before. This is such great realization for us because school is such a positive experience for him and it means our son is most likely the healthiest he's ever been. If we weren't sure about that already, the fact that the nurses are constantly throwing out his "incessantly shrinking" clothes could've alerted us.

Jessie just finished a month of weekends filled with dance competitions which was good for me. For Joan? Not so much. Most of those weekends I got to keep Ben and spent time watching baseball rather than doing something more "husbandly" like mowing the lawn because...well...Ben likes baseball. Of course Joan will tell you that Ben likes watching anything Daddy's watching. Ben and I know better.

The last weekend of April I was in Savannah, GA for my first art festival of the year which you will hear more about later this week. Suffice it to say that I was thrilled with the outcome! It was great seeing some dear friends for the first time in almost five months plus sales were very good despite spring showers attempting to ruin the festivities. I immediately returned home to begin training for my new temporary job: completing follow-up surveys for the 2010 US Census (again more about that in the coming days).

This afternoon Jessie, Joan, and I spent a little while collectively looking at some of Ben's latest paintings. At the request and suggestion of several folks who regularly observe his work we've decided to allow some of Ben's paintings to stand on their own, meaning yours truly will only sign and date them for him. Strangely enough when we do this, the three of us almost one hundred percent agree that the his works fall into three categories: (1) needs more work, (2) time for Bennie to add something, or (3) "oh my gosh, do you see the same thing I'm seeing?" Two of his latest went immediately into #3 today and they are now for sale and described below.

Title: "In the Wilderness" (pictured at the top)

Description: Acrylic paint on 11" x 14" canvas panel (standard frame size). We would encourage you to click on the image for a larger view - the focal point seems to be in the lower right hand corner. That is all the hint we will give. I am genuinely interested in your thoughts so be sure to comment below!

Price: $45 - includes shipping (this is a largest panel Ben has completed!). Prints will be available once the original is sold.

Title: "Learning to Walk"

Description: Acrylic on 6" x 8" canvas panel. The footprint shapes were quite obvious including the "flip-flop" (as Jessie called it). Obviously the phrases "In His Steps" and "Footprints in the Sand" came to mind but we all felt those to be too hokey. I wanted to call it "Learning to Crawl" (as a nod to the rock band The Pretenders) but for some reason Jessie gets Ben's vote.

Price: $25 (includes shipping)

As always the first person to e-mail at benwaddell@bellsouth.net gets the initial opportunity to purchase the painting(s). If you are interested in prints then e-mail me as well.

No Surprise

2010-04-03T20:16:00.004-05:00

Since Ben's first experiments with paint I've been convinced that many children (and most likely adults) with significant physical, neurological, and/or emotional challenges have an ability to communicate with the typical world via not so typical means. Here is another interesting example of that possibility. While you're here stick around a few minutes to catch up with us...

Sorry I've been away for so long. I never intended to neglect this blog for this long and quite honestly there have been a good number of blog posts that have been formulated, constructed, and completed during the months of February and March. Unfortunately they all occurred away from my computer during the many sleepless nights that have plagued me since February 4th (my sobriety day).

The past few weeks have been a rather unique period for me. After making the decision to quit drinking I actually found it fairly easy to stop those first few weeks. In fact it almost felt too easy. My gut instinct was correct.

My intention was to incorporate my "recovery journal" into our story. While it may seem to some as a new direction for this blog the truth is that the entire picture of exceptional living cannot be presented without the parts that aren't so inspirational, artistic, or even attractive. The current personal struggle is just a microcosm of the life those of us live within the world of special needs. That ticket aboard the emotional Scream Machine is punched daily and the exit gate is locked.

Tomorrow is day 60 of sobriety. My hope and prayer is to get to day 61. And now a personal goal is to return here once again on a more timely basis to tell you about my journey within the journey.

Rub-a-Dub-Dub, Two Bens in a Tub

2010-03-08T23:08:00.006-05:00

Hello everyone! It's been awhile since I've gotten to blog. I just wanted to tell everyone how much I appreciate the nice thoughts and prayers you send my way, particularly last week when I had to go to the hospital. The folks there are very kind but it is definitely my least favorite place to visit.

Usually I'm kind of grungy after a hospital stay so I get to take a bath with my best friend - my Daddy! I love the water so I cannot wait until we can get in our pool again! Of course it'll be another couple of months before it is warm enough for me to swim. In the mean time I'll settle for splashing about in my tub.

Sophie, our kitty always has to check out every thing I'm doing. Even though she's not supposed to, Sophie occasionally sleeps at night on my feet and curls up on my wheelchair when I'm not in it. If I'm playing with my toys she wants to play too!

When Jessie was younger (and much smaller) the three of us used to get into the tub together. That was a lot of fun because we used to make a big sloppy mess with bubbles and soap! Now Mom and Dad say I'm way too big to get three of us in the tub. I still laugh a bunch though when I set my sights on Jessie's shower stuff.

As you can see it doesn't take me long to earn another trip to the tub!

Fumes

2010-03-01T22:07:00.010-05:00

So I've been neglecting this blog for a couple of weeks. I swear to God it wasn't intentional. I hope I've earned the privilege to swear to The Big Kahuna since I've been dealing with Him/Her/It (or my Higher Power as the Big Book calls it) on a daily basis since we last met, asking for help in keeping my paws off those bottles of fermented grapes. To be quite honest things have been much easier than I expected. In fact way much easier. Until today.

At the moment I'm staring at a half empty bottle of Diet Dr. Pepper to my right and a half (or less) empty son to my left. It's a little after 10PM - only about 10 more hours until Joan arrives for her shift. How's that for symmetry? As Robert Frost would say I've got "miles to go before I sleep."

My plan is to save the hard stuff for later when my mind begins to wander over to that dark place where only overnight hospital visits beckon nightmares from exhausted parents...or when I begin to nod off. Whichever comes first. Shall I name my poison? Try genuine pure grain totally caffeinated Dr. Pepper. According to Gene Simmons of Kiss, it's doctor's orders.

In all seriousness Ben had a rough weekend. After a bit of a cold early last week he seemed back to his usual happy smiling self by Friday which begged for an invitation to venture out with his family Saturday. Late in the morning with unusual springlike temperatures for this winter our boy began to purge whatever happened to be in the vicinity of his small stomach. Again, perfect Waddell family "symmetry." And even though X-rays haven't confirmed it yet we are fairly certain he still has most of his major organs.

Given that attempts to help him digest any of his seizure medicine failed miserably and that his little gas tank was sitting on empty our little man was at the point of complete physical exhaustion. So here I sit in room 6519 of the Greenville Childrens Hospital late on a Monday night just a few days after I bragged to friend about how well Ben has weathered this untypically cold wet winter here in the south. Have we discussed symmetry yet?

Excuse me for a few minutes while I stretch my legs and crack open a bottle of Docteur Poivre. You know, I really really wish I had just a couple shots of Jack the moment...

12:35 AM (March 2nd)
Just for the heck of it I checked the weather for tomorrow morning. Two to five frigging inches of snow! In March! In Greenville, South Carolina! Seriously, WTF? We're gonna be stuck at the hospital watching it snow. Three Christmases, three Thanksgivings, one July 4th, and numerous birthdays/anniversaries have been spent here. Never a frozen event though. Oh crap...I just thought of something worse. I'll be stuck here with hospital cafeteria food and no alcohol. This just sucks!

1:35 AM
It didn't take long for one of those "higher power" moments to hit me like a "two-ton heavy thing" (just for Queensryche fans). For some reason I saw a few comments had been added to my last post from February where I admitted my alcoholism. If you haven't figured it out yet betwixt the joking and delirium of non-sleep I am seriously admitting how much I'm feeling sorry for myself and the predicament I find myself in at the moment. In fact let me just go ahead and yank that wild hair by the root: I am really really really looking for an excuse that will allow me to hit the liquor store on the way home tomorrow. Please note the number of times I typed the letter "i" in this paragraph.

Thank you my sweet dear friend, Kyla! Her most recent comment sent me here. I found myself absolutely mesmerized by this woman's blog so I kept reading until getting really interested in one particular guest post. It was as if I were reading my own little journal about drinking (except for the fact that some of my family have already been hurt) so it made sense to follow the guest over to her own blog. Ever have one of those moments when the really really really huge world becomes really really really small in an instant? And have I ever told you how dearly I love my blog friends?

Forgive me all of you who I honestly care about but haven't taken the time to catch up on your lives recently. The kindness just from today? Sympathy from Tanis, encouragement from Corina, direction from Kyla, and perspective from Maggie.

2:55 AM
The free coffee available for parents on the floor would make a decent paint thinner. My nose told me so but my taste buds decided we needed a brief additional side trip on this adventure. Trust me, I'll get back at them later this morning when we hit the breakfast buffet downstairs. My guess is that the coffee serves as an added income stream for the hospital. Just about the time Junior is ready to go home after his recent appendectomy, Mom checks in down at the ER with a suspected ruptured colon.

Here's some more quality information about this hospital especially for you ladies: keep on your toes when sitting on the toilet. With the amount of soda I've ingested the past 12 hours the trips to the loo are more frequent than I would like given the situation. Every time I flush I fully expect to be pulled into a Black Hole (no crude analogy intended - either time). That would definitely suck literally and figuratively. Also the damn thing is very loud - so loud in fact that I have to put my hands over my ears while hoping not to screw up the space time continuum thingie. And this from a guy who use to sing for this heavy metal hair band.

4:15 AM
Joan always endears herself to the hospital staff and specialists by presenting a spread sheet entitled Ben at a Glance. The title itself is a bit of a joke to us now since there's way too much information presented to absorb it in a glance. What started as a quick print off of medications, vital stats, and insurance providers has become a 6-page short medical biography of Ben. Anyone whose had to go through any type of admittance to a medical facility will know how handy a list like this would be.

I've spent the past hour or so looking over it. Even after ten years it blows me away how much our son has been through in his short time with us. One of these days I'll find a way to post some of these pages here but here's a brief summary:

This is Ben's 13th official hospitalization including the initial 3-month stay in the NICU.
He has endured 12 surgeries or procedures requiring general anesthesia. Some of them are a tracheotomy, a shunt placement, a G-tube insertion, a cleft palate closure, and at least two airway reconstructions.
At least 32 major medical tests have been performed on him. These include multiple X-rays, MRIs, CT scans, EKGs, EEGs, upper and lower GI studies.
Ben is currently in the care of at least 13 doctors most of whom he only sees once a year.
Even though we know exactly his diagnosis (Tetrasomy 12p otherwise known as Pallister-Killian Syndrome or PKS) one full page is dedicated to anomalies or physical abnormalities which may or may not be associated with it.

If one were to spend some time reviewing this spread sheet the conclusion might be made that you know Ben pretty well. That would not be the case. The 6 pages of facts about Ben only shows the courageous strength and determination he has to live life as fully as he possibly can. They don't reveal his intelligence, his compassion, his humor, and his joy that more completely define his character.

Despite that most of these hours spent with my son have been watching him sleep my personal desire remains to be more like him each and every day. I said it before and I'll say it until my last breath here on Earth, Ben truly is my hero.

Good night...or rather good morning everyone!

One Day at a Time

2010-02-11T18:18:00.003-05:00

“Hello! My name is Bennie and I’m an alcoholic.”
Shocked? You are not alone. Even some of our closest friends are just finding out and most of them are just as surprised. Other than my immediate family (including my brothers) folks are still questioning my decision to join Alcoholics Anonymous.

As soon as I decided to embrace sobriety I knew that I would eventually blog about it – the difficulty has been figuring out how and when to do it. After much thought and the fact that I happened to mention it in my monthly column at Hopeful Parents earlier this week it made sense just to put it right out there for the rest of the Blogosphere. For some a revelation like this might be too difficult or personal to discuss in public much less broadcasting it to a million potential cyber readers.

Long time “Ben Fans” know that we’ve never been ones to pull punches; our lives have been an open book from the very beginning of our exceptional journey which include some difficult not-so-pretty moments. Also every artist who is good at his or her craft is in a never ending search not for perfection but for Truth. Although “Truth” can be portrayed in one of my brightly colored seascapes or in my friend Conni Togel’s "whimsical" sheep paintings, it can just as well be disturbing or somber like Picasso’s Guernica or one of Van Gogh’s peasant paintings. As Oscar Wilde once wrote “The truth is rarely pure and never simple.”

In case you are now wondering, no, I am not one of those alcoholics. I haven’t been found sleeping under bridges at night neither have I disappeared for several days only to sober up in some jail cell. But that isn’t the definition of an alcoholic – it’s just an extreme example. My addiction is more subtle, hidden for the most part within the walls of our home. Had I taken my disease elsewhere, to that gutter under the bridge or some crowded pub filled with folks like me, most likely I would’ve spared my family (mainly Joan & Jessie) at least some of the emotional damage a selfish sot as me can unknowingly dish out.

I am only at the beginning of this new detour from my original life journey. Interestingly I am neither afraid nor ashamed of where I find myself. In fact I am excited. There is freedom ahead of me and I am anxious to discover it despite the hard work I will be facing in the coming weeks and months. There is also baggage to shed that has anchored me from moving forward with my life. Instead I’ve been mired in my anger, resentments, anxieties, and fear all of which collectively have stolen my joy.

Over the next few days I’ll share more about how I became addicted to fermented grapes and how an unexpected trip to New Orleans of all places brought me to my true senses. It is definitely an interesting tale and perhaps sharing my story will get the attention of another alcoholic so that he or she will seek the help so desperately needed.

On the Seventh We Go Here...

2010-02-07T15:27:00.003-05:00

Once again it is the 7th day of the month so you'll find our regular column over at Hopeful Parents. If you haven't visited and explored our favorite "group therapy" site yet then today would be a good day to hang out. Better yet, become a member and get involved with the discussion forums! We promise it'll be worth your while.

Grins, Giggles, and Gratefulness

2010-02-05T19:53:00.004-05:00

From one of our painting sessions this week where Ben was about to wipe the purple off the canvas which he didn't particularly like. Evidently this made him almost deliriously happy. I think all of us who have spent time with him painting would agree it's the best form of therapy available.

Another Ben & Bennie Painting!

2010-02-03T13:43:00.003-05:00

Years ago I planted Cone Flowers in our front porch bed to attract butterflies and finches throughout the summer months. Since this particular plant is a perennial I thought it was a good choice to keep color in our yard without having to plant annuals several times a year. Little did I know how invasive these flowers are. Those tiny little seeds that fall from the center cone in the fall spread like wild fire and now Ben has a good look at Purple Cone Flowers in front of his window.

As you can probably guess my main contribution was "outlining" the petals of the flowers, shaping of the pot, and defining the leaves. And in he has one other addition that I must reveal that makes this painting particularly personal: the top left corner is chewed upon. You can actually see it in the image above. To be creative while teething can cause an artist an unusual hunger in perfecting his craft - either that or dad took his eyes off the young artist at work long enough for said artist to try out an acrylic sandwich.

Title: "Purple Cone Flowers"

Size: 8" x 10" canvas panel (standard frame size).

Suggested Price: SOLD

As always e-mail me via benwaddell at bellsouth dot net!

First Ben & Bennie Painting of 2010!

2010-02-01T16:22:00.004-05:00

I've been trying to let more of Ben's own personal work show through in our collaborative pieces. We are quite pleased with this one in particular because I left the red petals of the potted flower completely intact! Over the past few days Ben has begun work on a few new canvases and I've finally made a serious effort to return to my won studio in preparation for this year's shows. The recent trip to New Orleans has obviously been an influence so I'm taking advantage of that while images and the experience are fresh on my mind.

Title: "Potted Flowers"

Size: "8 x "10 acrylic on canvas panel (standard frame size).

Suggested Price: SOLD

As always the first to contact me gets the painting. In full disclosure we will have two more available before the end of the week (both are flower themes) but I personally like this one the best. My e-mail address is benwaddell at bellsouth dot net. We can then discuss payment and shipping methods.

A Visit to Ben's Studio

2010-01-29T17:41:00.008-05:00

For the first time in 2010 Ben got to start some new canvases. He was so excited and fired up that both Nurse Tracy (his primary nurse) and Nurse Julie (his occasional evening nurse) got to work with him yesterday. He was so very full of energy which is not an unusual trait of Ben these days.

After I uploaded and began preparation of these post I was a bit torn. In one way I was rather disappointed in that none of them capture that energy I mentioned. However in another way I pleased to see once again how intense Ben is when he paints. This was Tracy's second "painting with Ben" experience and Julie's first - both absolutely marveled at the young artist's ability to convey what he wants, from the choice of paint color to the moment he says "I'm done."

I myself was blown away by his desire to all of the sudden mix colors on the canvas - something I rarely do. At first I thought it a fluke until he did it once more in his evening session. He is also (obvious to those around him) making a very distinct choice of colors much more dark and moody than I would choose. Is he developing his own style? I cannot answer this and none of us may never know. My gut feeling is that cognitively does understand what he is doing and therefore by creating art Ben is liberating himself from the constraints of his physical body.

Ben chooses his color. We usually give him only three distinct choices but last night (we didn't take pictures unfortunately) we rotated several sets of colors using a process of elimination. It worked wonderfully!

Earlier in the day I had mentioned that I didn't have a bottle of one of my favorite paint colors: lime green. Ben deliberately chose yellow (a first for him) and immediately blended it with the green he initially selected. The result? Lime green. Coincidence? By the way I have witnesses for all of these things!

Ben was none too pleased about this shade of purple. We are now positive that he wanted a real dark purple color that he is used to rather than this lilac. We eventually told him he could wipe off the paint if he wanted which led to...

...Ben wiping off the paint.

Windows

2010-01-21T18:15:00.005-05:00

Nope. I won't be discussing that software that made Bill Gates so wealthy. Although I use it every day there are plenty of techie blogs out there to tell you about the ins, outs, and "what nots" of whatever version of the desktop software you might be using.

Instead I want to talk about "windows of the soul" which happens to be the title of a book written by Ken Gire that I am currently reading. My mother actually loaned this to me about two years ago after reading it for herself. She naturally thought of me given that throughout the book the author uses artwork, stories of artists, and the creative process in general to illustrate how God attempts to communicate with us and how we attempt to reach out for God.

In Mr. Gire's words, "We reach for God in many ways. Through our sculptures and our Scriptures. Through our pictures and our prayers. Through our writing and our worship. And through them He reaches for us....But we must learn to look with more than just our eyes and listen with more than just our ears. We must be aware, at all times and in all places, because windows are everywhere, and at any time we may find one. Or one may find us."

Now before you become turned off lest you think I'm about to thump the Good Book over your head for awhile I ask that you please keep reading. I truly believe there is a message here regardless of your spiritual beliefs or lack of them. Even though my mom was anxious for me to read Windows of the Soul two years ago I honestly wasn't prepared to read it until recently when I made a significant attitude adjustment. In fact my mother has probably completely forgotten that she loaned me this text.

For a small part of the book Mr. Gire writes about his own journey toward becoming a writer; something he thoroughly enjoyed doing but never dreaming he'd make a career of it. I can totally relate to his experience. Ten years ago I thought my own career path was set in doing something that paid the bills but left my heart and soul empty. So many years before I should have been looking for one of those windows.

Even though I'm still roughly halfway through reading Windows I've already drawn some conclusions. First and foremost it is never too late to change career paths or even to make huge life-changing choices. Usually these are huge "picture windows" with opportunity along with opposition obscuring the the grand view. Trust me I have made one of these within the past decade.

Probably more important though are those smaller windows - ones that offer just a glimpse of the backyard of your life or the view of familiar things not far down the road you usually travel. Those windows are not as inviting but can be just as life-changing as the one that offers the scenery of a mountain valley or a sea shore. Within the last 6 weeks I have paid closer attention to them and I can truly say many windows around me have been opening and closing: some of them good...some of them not so good.

From the very beginning of Ben's experiences with the rest of the world one thing has remained clear: our son wants to not only exit our home at times but to leap or even crash through those windows that surround him. The hummingbirds and finches that feed outside his therapy room...the cars and trucks that pass our living room window panes...the waves crashing to the shore that he has seen from my mother's beach home back porch. Each of them has been an invitation to to experience life in a way Ben is not accustomed to but is ready, willing, but not able to. There are times I am thankful for the seat belt on his wheelchair. There are other times that I am not.

This Should Be Criminal

2010-01-11T18:02:00.002-05:00

Here is a story about how the economy and state budget cuts are beginning to affect families like us. Karson Brewster was born with a rare genetic disorder, something she didn't ask for nor earn because she had bad parents. It is a situation that many families within the disability community have to live with. We were just hit by lightening.

Many...no...most of us survive on state supported funding to help us care for our children. Honest to God we wish we didn't have to but it is the reality of living this life we didn't choose. Like the Brewsters one of the spouses usually ends up quitting their job to help care for the child. That becomes financial smack down number one in that a two income family must now rely on one. Financial smack down number two is the Great Recession caused by our previous administration's ineptitude at overseeing an out-of-control banking system and the decision to use valuable taxpayer dollars to invade another country against the overwhelming opinion of the American people not to do so. Now our elected "leaders" are going to punish the most vulnerable of our citizens?

Certainly hard decisions have to be made in managing state budgets with great shortfalls but cutting from disability administrations should be the last place to look. How about from transportation, tourism, natural resources, or tax agencies? Shame on you Gov. Martin O'Malley. Shame on any elected official or anyone else for that matter who steals from a special needs family.

Painting

2010-01-07T18:56:00.002-05:00

Please accept my apology for being complacent about our blog over the past three weeks. Honestly I've had plenty to blog about but also in honesty I just didn't feel like it. Off the bat you may think that is a bad thing - you'd be wrong.

The off-season for selling artwork has arrived. This has annually been a very trying time financially for our family in recent years since each of those years I've sought unsuccessfully to secure some type of temporary employment to prevent the need to constantly borrow money from family members just to make ends meet during the cold months.

Most employers aren't very interested in hiring someone who has several hours available each day scattered between nursing hours, doctor appointments, therapies, and the inevitable "sorry I can't come in - the nurse is sick so I have to keep Ben." Via a Facebook acquaintance whose become a friend I've found work that perfectly fits with all of those scheduling conflicts! Officially I am now a house painter helping a friend with a fast track renovation of her house which happens to be very old...as in I am certain I found hieroglyphics behind some old masonry recently removed.

For the most part I am truly enjoying the work. I have discovered that I despise a cramped office environment, and though technically I have a boss to answer to, I get to work on my own. Most importantly I get to work with my hands. I guess I've found my collar is more a shade of blue than white.

Last week after a conversation with one of the other contractors on the job I began thinking about the correlation between the renovation project and the work involved in raising our exceptional son. The comparison at times has been quite startling. Most construction jobs revolve around a blueprint or a master set of drawings providing each trade very specific and detailed information about how to complete their work. In the case of this project I'm now involved with our plan of action is based upon what we might find behind the next wall we tear out.

In the case of a typical child there is plenty of information available to serve as a blueprint for his or her growth. I recall reading those "What to Expect When You Are Expecting" books during the first few years of our daughter's life. With an exceptional child there are no master drawings, no detailed specifics of how to get from point A to point B. Instead there is an ever-changing environment with few clear answers and difficult choices that involve creative thought, an adaptable mindset, and willingness to endure physically (and emotionally) challenging hardships.

This was made very clear to me this morning as I surveyed the work I've completed over the first few weeks. When I started I honestly didn't know if I had it in me to actually do a good job of painting. Yeah I am an acrylic painter by trade but this house painting stuff is a completely different animal! Also I found it difficult to know where to begin. We're talking a repaint on an entire house inside and out with other skilled workers needing to complete their work as well. To say it seemed like a confusing mess would be like saying Tiger Woods has a slight image problem at the moment.

Essentially I just followed my intuition (and a few hints from the homeowner about what she wanted completed first) and just started. The first few days it didn't feel like I was accomplishing a whole lot - doing a good paint job involves a great deal of preparation before applying that first coat of paint. I also got to know my coworkers who have been most helpful in communicating and organizing our goals so that we all work efficiently.

So as I finished cleaing up today I felt a sense of pride and confidence that I didn't have two and a half weeks ago. That feeling was not unlike the one Joan and I felt back in October when we celebrated Ben's tenth birthday. It was amazing to appreciate the "work" we have done ourselves toiling a decade without a blueprint. "The Work of Art" that continues to evolve into something we never could imagine keeps us on guard. He also keeps us focused on being Hopeful Parents.

And Even More Mini Canvases

2009-12-15T13:20:00.003-05:00

These are the latest ones I've completed which include some music themes and some sea creatures (click on the image for a closer look). Also I've completed (or at least almost in one case - need the straps of the flip-flops painted I just noticed) two 3" x 6" "signs." These look terrific in a kitchen, bathroom, or child's room hung with ribbon. I can personalize them as well with a name or some beloved quip (like "live, laugh, love"). There is still time to order and have your art delivered by Christmas! But e-mail me (benwaddell@bellsouth.net) as soon as possible!

New Paintings from (Mostly) Ben

2009-12-12T15:28:00.013-05:00

As you will see, Ben's style (with just a little help from me these days) is transitioning into something we feel is more inspirational and motivating...and obviously more interesting to him. Over the course of his or her career every artist naturally grows from life experiences, artistic epiphanies, and sometimes just plain boredom.

From the earliest days of his life we knew Ben was something very special...and not just in the terminology of "special needs." Our son has an exceptional gift - a gift that sometimes cannot be explained. Through all of the difficulties and challenges he has faced Ben has remained determined to conquer each of them, most often with a huge smile and a belly full of laughs. And along the way he's managed to keep the rest of his family and loved ones hopefully optimistic.

I've noted many times over the past months that I have a slew of Ben paintings to finish. Some of the images the emerge at first (or second or third, etc.) glance become obvious. Others? Not so much. And then there have been a few that I literally have been reluctant to do anything with. These in my limited artistic opinion I found to stand on their own. The first of these three offerings happens to be one of those.

The other two have evolved due to the recent literary additions to my own work. It felt quite natural that Ben's paintings reflect the message we generally interpret from him so my part is limited and very easy to contribute.

Another important change: we are not setting a price this time. We want the "collector" to purchase the painting for either what they think it is worth or what they actually can afford. Even though we need money, in discussions amongst the family, we feel this is the right thing to do because of Ben's gift. There is a huge difference between my and my son's art. Even though we create because we love it, I now do it as a source of income. Ben does it purely for the joy it brings him and in turn for the joy it brings others. As always click on the image to see a larger view.

"Rocket Man"
9" x 12"
This is entirely 100 percent Ben. I have two witnesses to verify that fact! The painting is Ben's most recent effort, facilitated the last day Nurse Stacey and Nurse Tracy (Ben's new primary nurse). Tracy was the one who first spotted the rocket. Ever since I saw it I've had the Elton John song running through my head. For some reason the lyrics seem very poignant in relation to the life Ben leads. Does he really feel alone in his "outer space?"

"Life's Challenges"
9" x 12"
Again all Ben with the with addition of the quote by Bernice Johnson Reagon. BTW, I have now fixed the missing "n". My gut feeling was to make the appearance childlike with a touch of graffiti.

"Opportunity"
8" x 10"
Another all one hundred percent Ben with a wonderful quote added by Dad.

A bio and description of our work together will be attached to the back of each painting.

Peace, Love, and New Art!

2009-12-11T16:58:00.007-05:00

Just in time for Christmas (with plenty of time to ship) I have several new paintings now available. Each of them is an acrylic painting on a gallery-wrapped canvas. The sides have been painted (no staples showing) so they are ready to hang on your wall right out of the shipping box...or out of that wrapped gift box from under the tree. Prices already include shipping!

Also tomorrow look for a BRAND NEW BEN & BENNIE PAINTING! We are quite proud of this one (and a few others to shortly follow). It's a totally new direction for our collaborative work. I don't want to spoil it so you'll have to check back tomorrow.

At the moment I am finishing up some orders of the mini canvases. Some of you were quite clever in choosing some ideas for images! In the next few days look for fish, music symbols, and a snow man. As always click on the images for a larger view of the paintings.

"Peace, Love & Ice Cream"
12" x 24"
$95

"Peace, Love, & Margaritas!"
12" x 24"
$95

"Peace, Love, & Martinis"
12" x 24"
$95

"Peace, Love, & Flip-Flops"
10" x 20"
$75

"My M&Ms"
24" x 12"
$95

For more information or details about ordering contact me at benwaddell@bellsouth.net.

Once Again

2009-12-07T17:15:00.003-05:00

The seventh of the month has rolled around again so you'll find my blog post over here today. If you haven't joined us yet at Hopeful Parents then come on over and meet more families like ours. Sometimes happy - sometimes sad - always informative. I've really come to appreciate the folks I've met there and hopefully this month's contribution reflects that.

So to be perfectly honest I'm not doing so well. Currently I'm at Kiawah Island spending the day thinking and reflecting about our current state of affairs. The trip to Savannah was a bust - and I am really doing an excellent job of beating myself up for it.

Folks we are quickly closing in on that flat broke status, a not-so-unusual condition for us this time of year. By taking the chance on this past weekend's show I made things even more financially difficult for us. To wrap things up in a nice package complete with ribbons and bows I didn't even make my booth fee. At the moment we can't figure out how we're going to provide a Christmas for Jessie much less Ben.

Joan has been the most incredible wife anyone could have by continuing to support my career as an artist but it's becoming increasingly clear that I might have to look for another source of income. Anyone know anything about robbing banks? I know how to rob Peter to pay Paul! I do have a few irons in the fire but those embers aren't even glowing - just a few whiffs of smoke every now and then.

I will admit the mini paintings were a hit. In fact that is about all I sold. But selling 2 dozen originals at 5 bucks a pop doesn't add up to a whole lot. Bummer.

Anyway, I head home tomorrow morning. Hopefully getting some hugs and smiles from the kiddies will cheer me up some. And if you know of anyone wanting to share the gift of art this Christmas please let me know!

The Minis Are Here!

2009-12-03T14:10:00.004-05:00

For those following me on Facebook you already know I've been furiously working on these the last week or so. Each one measures 2" x 3" and is an original painting on canvas! If I didn't already wear glasses I certainly would need them now.

Give a gift of art this holiday season! I can personalize your canvas or let me know of another theme you might like. Some future creations include fish, ladies shoes, Mr. Sunshine, Tiki faces, and abstract symbols.

I can attach a small bow to make a Christmas ornament or a magnet so you can display it on a refrigerator. Or display it on a small easel! If you work in one of those cubicle environments then hang it above your desk for a bright reminder of future vacations.

If your shopping for a teacher, a co-worker, or looking for a unique stocking stuffer a mini canvas would be perfect and affordable! The canvases are $5 each (plus shipping) - if you buy five I will throw in a sixth one for free! Also I have signed the back of each one.

To order or for more information e-mail me at benwaddell@bellsouth.net. I may not be able to get back to you until Monday since I leave for Savannah, Georgia tomorrow for Christmas on the River. As always click on the images for a larger view.

The Brass Ring is Still Out There

2009-11-30T19:03:00.006-05:00

"In ordinary life we hardly realize that we receive a great deal more than we give, and that it is only with gratitude that life becomes rich." Dietrich Bonhoeffer

I am in a different place than I was one year ago. The exercise of trying to post every day in the month of November has paid off in a way I didn't expect. Without checking I think I missed 5 days - how about about I treat those in an Anglican manner and call them "feast days" (cheat days as some of us call them)?

Truly the real meat and potatoes (turkey and dressing?) was served while keeping a thankful outlook this last week. The quotes I have posted have been rather tasty - chewed thoroughly and digested completely. I understand now, perhaps for the first time in my life, that a thankful heart is not only "happy" but a choice one makes. It's not a feeling or an emotion. It is a way of living.

After surveying what I have versus what I don't have, I will take that which belongs to me. I'll be the first one to admit that I wish things were better - not only for me and my family but for those many folks around us genuinely hurting. This was made completely clear by the sudden death of one of our writers at Hopeful Parents the day before Thanksgiving.

So I conclude the month of November 2009 with a new insight and perspective. I am fortunate to have this blog where I have met so many wonderful people either physically or via the cyber universe. In a way I've been reminded that I'm still on that Carousel of Life with the brass ring still dangling within my grasp - more than determined to grab that sucker the next go by.

Bohemian Thanksgiving

2009-11-28T19:28:00.003-05:00

I certainly have more folks to be thankful for...BUT the gift for dark humor is definitely one Joan and I share. The Muppets are awesome! If they can take something artistic to a new level then even more awesome. This one goes into orbit.

The Longest Day Revisited

2009-11-27T16:41:00.005-05:00

A year ago today we were facing the most frightening situation with Ben in quite some time. That whole month beginning in late October in 2008 was series of awful events that just snowballed straight into the Pediatric ICU of our local hospital. What difference a year makes!

From the very beginning of Ben's life he's shown a certain ability to rebound from pretty significant illnesses. Although he obviously has strength and courage I have not personally witnessed before, I'd be remiss If I didn't give credit to the outstanding care he's received over the last ten years from doctors, nurses, and other health specialists who have worked so diligently to maintain or return Ben's health.

So as we continue to enjoy this annual American holiday much more so than last year our family would like to thank all of those folks who sometimes sacrifice holidays at home with their own loved ones to care for those who so desperately need the medical attention. I know that Ben is thankful to enjoy another season of colorful holiday lights.

Happy Thanksgiving from Ben's Family!

2009-11-26T18:33:00.003-05:00

Can you guess what I'm most thankful for? Perhaps I'm just a bit biased but I'm very grateful to have the greatest family to hang out with each and every day. We hope your turkey was deliciously stuffed and that now you are as well.

"Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow." Melody Beattie

Giving Thanks 3

2009-11-25T18:12:00.004-05:00

We've been thrilled the past couple of weeks to have acclimated Ben's new primary nurse into the family. Over the nearing ten years since we brought Ben home for the first time there have been a slew of home nurses that have come to visit us. Many of them have only stayed a short while just to learn how to care for a child with a tracheotomy. Making a very conservative guess perhaps two dozen nurses have taken care of our boy on a regular basis during that time (it's probably more than that including one male - and don't make fun of him like "Dr. House" - he was retired Marine Corp so I'm certain he could kick major ass).

Joan and I have often talked about the oddity of having a stranger come and live with us for roughly eight hours five days a week. It took a long time for us to adjust to this lifestyle - we cannot imagine how strange it must be for that courageous person who knowingly, willingly, and in almost every case lovingly decides to spend their work days living in this household. Not only are they subjected to the ever-changing conditions of our exceptional son (including changes of diapers soiled by a child not of your own) but they also get to experience the "drama" of our entire family in full blown living color. For the moment think about all those things you really don't want your neighbors to know about you - now think about all those things you really don't want to know about your neighbors. You see where I'm going with this?

My gut feeling is that none of these ladies (and one guy) make a great deal more by choosing this career path. Even if they do make a few extra dollars, I personally don't think you could pay me enough to actually live in another family's home much less care for a special-needs child while doing it! These are indeed special people. And the really, really good ones become part of our family. In our book they have to.

Nurse Tracy and her husband are native South Africans. Having her become Ben's nurse has obviously been one of the most fascinating relationships we've established since we embarked on this journey. This particular day was awesome since Joan took the day off from work and was able to spend some time with Tracy. Yes indeed she has a very cool accent but we're most enjoying to hear about her family's travels and the cultural nuances from places they have lived. Of course our biggest worry was eased quite early on since she fell in love with Ben.

So with these observations in mind on Thanksgiving Eve I want to wish a very deserved blessing upon every person who has chosen nursing as a career - particularly those who walk into a strangers home every now and then...

Special thanks to Vickie, Lisa, Stacey, Julie G., Julie C., Julie A., Kelly, and Mary.

"It is impossible to feel grateful and depressed in the same moment." Naomi Williams

Giving Thanks 2

2009-11-24T18:08:00.003-05:00

Today we took Ben to his weekly out-patient therapy appointment. Every Tuesday within a span of an hour & a half he gets physical, occupational, and speech therapies. We call it his "work out time" and indeed the room we typically use is called the "gym." If you are not familiar with these kinds of therapies, particularly for non-typical children, then you might not think a whole lot could be accomplished in just 90 minutes each week. You would be wrong!

For those of you who've endured rehab for a sports injury you know exactly how important this is for recovery. For a child like Ben keeping up with PT, OT, and ST can be a matter of life and death. And it's not just been those Tuesday visits the past two years that have made a significant difference in our son's well-being - it includes a whole slew of therapists who have met with us in hospitals, in schools, in clinics, and even in our own home.

Our family takes this part of caring for Ben very seriously. Even Jessie knows how to stretch Ben properly and include challenges that will improve her brother's quality of life. It is no coincidence that Ben's hospital visits, even illnesses, have dramatically decreased every year of his life because of the gain in strength and endurance.

So on Day 2 of Thanksgiving Week I'd like recognize the blessing of all of those folks who have made (and continue to make) a tremendous impact upon our family. I know I will forget some but thank you Barbara S., Dawn, Mark, Lisa, Beth, Cheryl, Jennifer, Theresa, Barbara R., KP, Ashley, Vance, Gene, and Michelle!

"At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to thank with deep gratitude of those who have lighted the flame within us." Albert Schweitzer

Giving Thanks 1

2009-11-23T19:34:00.004-05:00

This week I want to share some of the things I am most thankful for. Yeah, I know it's a bit cheesy but I do think that what folks treasure the most gives an interesting insight into their lives. Note that I'm not judging any of you posting your thankfulness each day this month on Facebook but I think it is much more difficult to condense one's true appreciations over the course of a few days.

Today I am thankful for my children. There was a time in my life that I would shutter had I not placed God in that number one spot. Jessie and Ben are the reasons I still maintain a relationship with The Heavenly Father/Mother albeit a much more improving one from this time last year.

In my honest opinion I think God likes this given his love for His/Her own son. For so many years I really never understood many of those passages where Jesus talked about looking at things through the eyes of a child or even his particular love for teaching children. I do now. In particular is the appreciation of Ben's incredible innocence. That boy has taught me more about unconditional love than any other person or experience in my entire life.

Today's cool quote is from Oprah Winfrey in honor of her retirement from her talk show: "Be thankful for what you have; you'll end up having more. If you concentrate on what you don't have, you will never, ever have enough."

Ben Having Fun Watching Football

2009-11-22T18:52:00.003-05:00

This has been just a snip-it from our weekend. Joan & I have been completely entertained by Ben the past two days. From Animal Planet to college football to Minnesota Vikings Sunday, it has been a sheer pleasure to be around our boy! If there is someone who deserves this amount of fun it's definitely Ben!

2009 SoulShine Christmas Card Collection

2009-11-21T12:51:00.012-05:00

I have to acknowledge the inspiration for this year's set. Had it not been for an inquiry by Cynthia B. (the mother of another handsome young man named Ben) I probably wouldn't have even put one together. She has been kind enough to purchase sets each year that we've had them and usually a great many of them! Thanks Cynthia & Ben!

Unlike previous holidays this year I have three brand new images, not just paintings from previous years that I've had to dig out of my old archives. For 2009 I've embraced my "folksy" influences to come up with simplified themes. They still capture the essential essence of what I do which is use bright colors to define the image. All were influenced by the fourth painting of the collection which is indeed my favorite. You'll soon see why...

"The Star of Hope"

"The Tree of Joy"

"The Dove of Peace"

"The Angel of Courage"
Completed last winter, Ben did about 95 percent of the work on this one. This piece was the starting point for the rest.

As always each set includes 4 cards (one of each image) and 4 envelopes packaged in a sealed clear plastic bag. Let me know if any of them will be a gift so I can include a cover sheet featuring each image. All the cards will be personally signed and include a brief explanation on the back with the name of the painting and a little about who we are. Also the insides of the cards are blank.

The same pricing as years past: $12 for a set - buy four sets, get one set free! Shipping is included. Also if you would like to substitute another card for Ben's image then let me know that in your e-mail as well. We totally understand that some folks might not get it and it's nothing personal against Ben.

For orders reach me at benwaddell@bellsouth.net!

PS - The original paintings (except for Ben's) are also for sale. They are 9 x 12 acrylic paintings on canvas paper. $35 for each or $75 for the set of three.

We've Come a Long Way

2009-11-20T18:57:00.004-05:00

The last time the Minnesota Vikings had just one loss this late in the football season Jessie was just toddling and Ben wasn't even a glimmer in his Dad's eye. Before you non-sports-loving individuals leave to read a better written and more interesting blog let me implore you to stick around for a few more moments.

This was our Christmas card image back in 1998 when the Vikings went on a winning rampage. Early in 1999 they once again broke my heart by becoming the first 15-1 team to not reach the Super Bowl (much less win it). But during those wonderful months leading up to the playoffs, we were an excited family. Even Jessie got into the hoopla wearing her Chris Carter jersey every Sunday and putting up with Daddy "trying to make the TV mad" (of course it was the opposite but she was pretty smart just for suggesting it).

In 1998 Joan and I decided we'd mail out holiday cards with our own artwork - and she allowed me to come up with the theme. Little did we know that this would be our foray into professional printing and note card design. Believe it or not the finished product took a great deal of work. We took pictures of the three of us so I could develop caricatures. Those ended up being used to compose the pen and water color pencil image used above. Photoshop may have existed back then but we weren't aware of it nor could we afford it so no screw ups were allowed!

Card stock wasn't readily available either but we found some 8 1/2 x 11 paper that folded nicely into a roughly 4 x 6 envelope. The bottom line is that it worked. Even though ~~most~~ all of our friends follow other teams they enjoyed the humorous surprise.

I say all this for two reasons...okay maybe three. If you are of a young age and choosing a favorite sports team let me suggest some that you might want to steer clear of including the Vikes. Secondly I will unveil this year's SoulShine Christmas card collection tomorrow! We are all very proud of the artwork since one is almost exclusively Ben's. And thirdly, if you want a cartoonish caricature of you or your family for some artwork in the future then please get in touch with me! I'll be honest - it was one of the most fun art projects I've ever done!

Laughter

2009-11-19T19:23:00.007-05:00

That was the name Joan gave to a photograph she took of Ben & Jessie back in 2002. She tried to once again capture one of those moments this past spring but failed to duplicate it in black and white - I think she did a marvelous job though in color.

These were another collection of gems hidden in our archive of digital shots misplaced but not forgotten. My wife has a gift with photography that I don't. I can capture some really cool shots of landscapes and abstract designs. Ask me to do portraits and I turn into a kindergartner with an SLR.

Honest to God I wish I could compose those "human" moments but I'm jelly when it comes to the lens and bodies. The same goes for painting portraits although I think I could do much better with a brush in hand rather then a Sony.

Anyway, we hope you enjoy these really cool photos taken by my artistic wife - yeah, she'd say it was lucky. I know better!

The Beginning

2009-11-18T12:23:00.009-05:00

While browsing through some old images in search of artwork to use in this year's Christmas card collection I found these pictures of Ben taken during his three-month stay in the Neonatal Intensive Care Unit. Given that he is now a little over a month past his tenth birthday I find these photos so very important to our family now. Those 90 days or so were the opening chapters of our new life of exceptional living. To say we've come a long way over the last decade is an overwhelming understatement.

For a long time I couldn't look at any of these without shedding tears. Those three months hold some of the most difficult days of our lives. Trying to maintain some kind of balance between keeping a "normal" family experience for Jessie and learning a whole new "exceptional" existence with Ben was a juggling act not for the feint of heart. In fact those props continue to fly back and forth between the two parents still trying to keep that circus act going.

The picture above was most likely taken the night before we brought Ben home (note the lack of any type of IV port). At the time he required continuous oxygen, 24/7 pulse & O2 saturation monitoring, trache care (still doing that), tube feeding (still on that one as well), and a whole slew of medicines to administer throughout the day either by nebulizer or his G-Tube (ditto again but not quite as much). Even though we would have a nurse around the clock the first few weeks at home we were required to care for Ben by ourselves for 24 hours before being released from the hospital.

This is one of the first pictures taken of Ben. October 18th, 1999 was exactly one week before he dealt with the first of several bouts with RSV. In the early morning hours of October 25th we were called to the hospital to say goodbye to him. Ben had other plans.

Even as a preemie Ben had his share of fat rolls. At the time (mid-November) his geneticist was very busy trying to identify some type of syndrome that he might have. Joan and I weren't convinced we were dealing with anything other than a premature birth. Now having a great deal of knowledge under our belts we can see the obvious signs that Ben had a genetic problem.

A little fighter rests up after his "one stop surgery shopping" experience. Early December Ben had a tracheostomy, a feeding tube inserted, and two hernias repaired in one afternoon. He was so tiny and yet he would still have more trips to the hospital in the coming months due to illnesses, hydracephalus, and a cleft repair.

Bones

2009-11-17T17:29:00.002-05:00

We went to Ben's orthopedist Friday. If you've not been following along for awhile let's just say this particular doctor would either make an excellent politician or a champion of casual summer footwear. The guy has flip-flopped almost every single visit in regards to surgery on Ben's hips.

Saturday Ben's most recent primary nurse stopped by for a visit. Vickie happened to be with me in January when we last saw the Bone Doc so it was good to have her back me up since Bone Doc is singing a new tune.

In his defense Bone Doc does have some significant worries; mainly how Ben would do under general anesthesia. Although he's never had any problems in his previous dozen or so "lights out" experiences this one will require a much more lengthy time "down under"... like up to six hours. It just so happened that Ben had a tad of congestion at the end of last week which was not the case last winter. Last winter BD was all like, "Hey, he's so strong now we might just to this operation before Ben is fifteen - we'll just delay it until he starts showing pain when his hips dislocate," which they often do.

Evidently Bone Doc is now waiting on his replacement once he retires to make the call on not when but rather if the corrective measure is taken. Fortunately after about 10 days of positioning Ben gently due to obvious pain somewhere around his pelvis he's finally returned to baseline (normal).

The angle of the picture above doesn't adequately present the posture problems Ben faces. Essentially he has what is called a "windswept" growth pattern around his pelvis and related joints. Add in a profound case of scoliosis and we have a young lad with an S-shaped body structure. As you can see in the photo his left leg folds up under his right one - this has become "normal" for Ben...and it's something that we've worked hard to slow down. Ben has worked even harder at it.

So it was a pleasant surprise to watch Ben today at occupational and physical therapies. In fact it was pretty incredible given that it has been almost a month since he's been able to attend his out-patient appointments. Not only was he cooperative and exhibited no noticeable signs of pain, we all agreed that he had one of his best therapy sessions ever!

The strange and unexpected continues in living our lives with Ben. And the emotional roller coaster keeps letting us off at a safe departure place rather than flying off the tracks.

Ben & Bennie

2009-11-15T18:55:00.004-05:00

I thought I'd share my newest favorite picture taken last night. We've had a great weekend complete with a tween spend the night party, several good football games, popcorn, homemade boiled peanuts, and a much fun lunch visit from Me-Ma this afternoon. We couldn't be more thankful!

We hope your family had just as much fun.

On the Palette

2009-11-14T19:18:00.005-05:00

Raw Sienna: It's mid November in the South and temperatures say it is Spring! Honestly I couldn't be happier. Today I'm wearing shorts since the highs reached the low 80s which is a good thing since we had a slew (okay three) tween girls left over from Jessie's sleep over last night.

Ben obviously stayed up with them since his room is adjacent to our den which has our loud television, near our kitchen which has the much used microwave, and very close to his HP Touch Screen computer which most likely played pop videos well into Saturday morning. He was lethargic most of the day unless we mentioned Jessie's little entourage. Then we got huge sleepy smiles.

Only one casualty was reported. Joan had to drive home one of the girls at 5 this morning due to an overdose of junk food and soda. Note to self: buy non-caffeine sodas next time we host that many kids.

Brilliant Blue: The regular readers may notice that given the challenge of NaBloPoMo I have missing entries for a couple of days. The truth is that I wrote blog posts but removed them shortly afterward. All but one were politically charged and to be frank I am very tired of the political dialogue in this country.

One of the entries made it to Facebook and I made a promise to not engage others there regarding hot topics which will not lead to civil discussions. Too bad because several friends of mine who have differing opinions about our current situation became angry for a variety of reasons. This upsets me a great deal because it is a perfect example of what is happening within our country at the moment - we are imploding from within.

Of all things I despise is when folks pull the religious quotes/sayings/folk-lore for their benefit. Regardless of whether you are an atheist or not (and I know some of our friends happen to be so) you cannot ignore the most overlooked and ignored of The Ten Commandments which in the least sense offers incredible advice: love your neighbor as yourself.

I raise my hand to admit that I am one of those who is most often quick to make a (wrongful) judgment about someone because I might disagree with you. How very wrong of me. How very wrong of all of us to just sometimes shut the hell up and listen to the other side...whatever the other side may be.

My personal feeling is that we are at another crossroads - similar to the one that ended the 1960s. The hope here is that education and memory will make many of us pause before we become so angry that we no longer listen to the real pulse of The United States of America.

Medium Magenta: I still have some interesting photos from my last two shows. For those in the Savannah market I will be down there for Christmas on the River the first weekend of December. Look for some more artwork you might consider as a gift in the next few days!

Art & Verterans Day

2009-11-11T14:30:00.002-05:00

Today we pause to honor those who have fallen or continue to serve as defenders of the freedoms we enjoy as Americans. No matter your opinion about whether or not our country should be involved in two wars at the moment the fact remains that we have hundreds of thousands of men & women of all races and creeds far away from family and friends putting their lives on the line for me, you, and everyone else who pledges allegiance to the United States of America. Millions more have made the same sacrifice in years and wars past.

Today I will say a prayer for our soldiers. I will read about their stories. I will give thanks for your bravery and courage. And in keeping with the theme of our blog I will share a story of how art can provide healing, bonding, and power to those who have seen the darkest of our humanity.

Peace to each and every one of you.