More Dabs of Color: Character

"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

"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

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.

Behind Blue Eyes

"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.

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.

Connecting at Hopeful Parents

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!

The Brass Ring is Still Out There

"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

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

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!

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

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

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

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

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

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

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

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

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.