Color Theory

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?"

The Character of a Saturday

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

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

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!

Chillin'

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

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.

One Day at a Time

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

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

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.

1. 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.
2. 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."
3. Everyone should have a sister like Jessie. No one can open a present faster nor run out of excitement over opening the next one.
4. Riding in a wheelchair down a snow-covered wheelchair ramp is quite fun. For Mom? Not so much.
5. 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.
6. Having a finger full of mocha icing placed on your tongue is an excellent treat particularly if you have a feeding tube.
7. Be sure to give the nurses a really big smile - they know where to find the mocha icing. 

A Good Cold Snap

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

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 Week of Thankfulness - Day 2

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

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.

Memories of The Peace Train!

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.

Peace Train!

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

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!"

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.

Birthday Weekend on River Street!

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

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!

Under Pressure

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...