A Life Without Regrets

There really is no such thing.  That point was made so very clear via a farewell to life in a blog post written a few weeks ago by a friend from my past. I had no idea that she was sick even though we shared quite a few friends on Facebook and quite frankly I don't know how I would've responded since we hadn't seen or even heard from one another for close to two decades.  I'd like to think we would've rekindled our friendship...that she would've gained strength and courage knowing Ben's story...that I would've (like so many others) been there for her in the end.

I do know that through her words after death I have learned something new about regrets and failures: they are as much a part of the human experience as success, learning, growing, and most importantly love & forgiveness.  This is an e-mail I sent to several close friends and family today.

"I'm not so certain where to begin here so I'll start with the fact that I received news via Facebook of the passing of a once very good friend this morning from ALS.  Vi Riner graduated from Eastside the year after I did (1981).  She was in the same class as my first wife and so I knew her fairly well.  In fact we went out a couple of times my senior year. Two things would prevent me (and I'm certain Vi as well) from becoming anything close to serious with her:  first, she was taller than me and second, she was "high-maintenance" (only child). Relationships with two high-maintenance personalities rarely end well  Like most classmates from high school we gradually lost touch over the years.

I ran into her during the Waddell Painting days when we were asked to give a quote to paint J.L. Mann High School's gym.  I guessing this was around 1996.  As I was taking measurements I asked a student about finding someone to open the locker room areas for me.  I watched as the young lady walked to the middle of the gym to interrupt the coach of the girls volleyball practice. The woman raised up a finger in gesture to suggest "give me one minute."  I nodded and went back to note-taking. 

A few minutes later I heard someone approaching so I turned and found myself staring at Vi.  I recall thinking with my shallow brain how she could've been a successful model given her looks and height.  At the time she was teaching English there along with coaching the girl's basketball and volleyball teams.   Over the next half hour or so we caught up with each other while exploring the smelly gym locker rooms and basement of that ancient facility.  We discovered that we both had several mutual friends, that she was in the middle of planning a wedding, and that we most definitely planned to keep in touch in some form or another.

That would be the last time I would ever see her again.

Over the years (particularly in more recent ones) I've learned about the deaths of friends and classmates from days gone by.  There have been maybe a handful that have affected me enough to give me pause from the day to day activities of life; essentially they are forgotten until a reunion rolls around or I run into another mutual classmate. For some strange reason today's revelation has been different.  I have been unable to get it off my mind.  In fact I have spent the better part of my day trying to find out more about Vi's death.

What I discovered was far more important than ALS (an absolutely suck-ass disease with symptoms that could very well determine Ben's outcome), her suffering, and her death.  She kept a blog over the last 27 months of her amazing life and closed it with her own farewell...her own obituary.  Quite honestly I am blown away in its honesty, wisdom, and beauty.  In fact it is probably one of the most profound things I've ever read.  It is a testament telling us how we should live despite the circumstances we come from, where we have found a safe place, what we may have been taught, and waht to do when life completely sucks.

It is quite obvious in her final lucid thoughts that she is not only addressing her loved ones, her former students, and her former mentors; she is addressing all of us.  I truly apologize for the length of this email (and her blog post is quite lengthy as well) but I want to share this with each of you because every one of you have been my family, my loved ones, my mentors.  Ideally I want to share it on Facebook but as you will discover Vi shared an almost identical ideology as I do in regards to the "important" issues of life.  Should I post it via social media there would obviously be some disgusting backlash that would tarnish the message she has for all of us.  Please share it with all who will listen.  Personally I would be so frightened to leave life in this manner yet it is the most probable way that Ben might exit this life.  It reaffirms my belief that Ben knows his days and is using them wisely.  He is also uniting the world without the academics or even the beautiful voice of Vi's."

  One Last Time

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!

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.

The Most Amazing Random Act of Culture

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

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.

Diligent Hands, Gracious Hearts

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!

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! 

Segev

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

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.

"Different but Not Less"

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!

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!

No Surprise

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.

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

Another Farewell to a Special Friend

When we began our journey into exceptional living we realized very quickly how some incredibly talented and gifted individuals who mean so very much to Ben's progress (and to us as a family) would have to move on due to career opportunities or life changes. I'll have to admit that for us this is one of the downsides of our situation. Our family has been very, very fortunate in that most of the care-givers in Ben's life have been absolutely awesome - in fact going well beyond the expected in helping our son to achieve significant goals. Once again, one of those special to us has moved on with her career.

Dawn Floyd began working with Ben about two years ago. He made a terrific connection with her almost immediately - not only is she blond and a gorgeous lady, she was single at the time! My boy knows how to flirt with the best!

In all seriousness we (he) will truly Miss Dawn. Ben has probably made more therapeutic progress in the past two years with Dawn and his PT Mark than in any other period during his life. And it seemed Ben knew that this would be Dawn's last visit with him at least for now. Message from Ben to Dawn: "Come visit me soon! You know how much I love you!"

Conner & Claire

Before I introduce you to these amazing siblings let me encourage you to pass this along in any way, shape or form. My hope is that this blog post goes viral like no other that I've posted. Conner & Claire's parents are dear friends of mine from college days.

Via Facebook we have been reacquainted after many years apart. It was simply amazing to discover how similar our families' journeys after the births of our second children. Lynne (mom) and I often talk about how amazingly mature our eldest became due to the circumstances of their younger siblings.

Conner is once again leading the charge to raise awareness but more importantly money by participating in The Leukemia & Lymphoma Society's Light The Night Walk. At the end of this entry you'll find a direct link to donate money on Claire's behalf. I think you'll be amazed at the determination, strength, and most importantly the love within this family!

The following is just part of their story but I would encourage you to read this first.

Lynne: "Claire is a Leukemia survivor and while that is not all she is, it is a big part of what has defined who she has become. She was eighteen months old when she was diagnosed with her cancer and underwent 2 ½ years of chemotherapy.She never saw it as anything but normal and she will tell you today that she would rather have an IV than a strep test. While she has survived the Leukemia we are always watching to make sure that the long-term side effects of such intensive treatment do not appear.

Just how far have we come? We walked for the first time in the fall of 2000. There were 5 people on our team and Conner set a fund-raising goal of 500 dollars. He raised over 1,300 that year.

In 2001 he began to attend the planning and logistics meetings...as a committee member. In 2002 he began to challenge some of the corporate teams and won. He still challenges and beats most of them. He also began to run the Coke wagon for the walk, no small task for a child of 8.

At the 2004 walk we had thunder and rain but every registered member of our team showed up to walk. In 2005 we thought the weather could not be worse than the previous year but it was. Yet the film crew that makes the national promotional videos came and taped our team for the official 2006 video used nationwide. That year he also publicly challenged the number 2 corporate team saying our team of friends and family could raise more money than their corporation. And we did.

In 2007 the walk site moved and the walk itself was held so early in the evening that the illuminated balloons did not show up, it was still light out. So Conner started an e-mail campaign and got our walk time moved back so we could walk again at dusk. In 2008 we again were the number one team both in funds raised and walkers. Of the 3,500 people attending and the $300,000 raised our team had over 100 members and raised almost 8,000 dollars."

Over all these years Conner has personally done most of the fund-raising for his team. Now he needs your help to make his last goal a reality. This will be Conner's last year raise funds for the walk. His goal? To be able to say that his team, a small tightly knit group of friends and family, has raised over 100,000 dollars for cancer research. If Conner were to achieve it the accomplishment would take place before this young man, amazing brother, and shining example to other young people has attended his first day of high school!

To reach Conner & Claire's fund-raising page go here.

Information about the national campaign can be found at Light the Night's website.

To find out more about research, the search for a cure, or just to check out facts go to The Leukemia & Lymphoma Society's page.

And Conner, you already have a bunch of folks here South Carolina rooting for you!

We Interrupt Our Blog...

...to make you aware of the situation in which one of our writers at Hopeful Parents has found herself. Jess blogs at Conner's Song where she discusses their life raising her son who has a rare genetic disorder (sound familiar?). And now her husband who is fighting for our country has been severely injured.

Please friends and followers go visit her when you can. Her husband is receiving treatment in Germany. It will probably be weeks if not months before they are reunited because of the care Conner needs. Prayers, hugs, and positive thoughts are quick, simple, and easy but they sure have meant a lot to us when we've dealt with our won crisis.

A Hero and Now a Hall-of-Famer

Sorry I've been away for awhile. There is much to write about as August and the "dog days of summer" approaches. Ben has been very healthy which has helped him accomplish some really cool things cognitively and physically! Jessie is fretting over the fact that she has about three weeks left of her summer vacation. Joan? She's still working way too many hours and needing another vacation.

But today I pause to honor the newest inductee to Major League Baseball's Hall of Fame. Jim Rice was a favorite of me and my brother Cameron. We were baseball nuts playing ballgames with our friends from sun up to sundown, watching MLB games whenever they were broadcast, and collecting baseball cards. Obviously a Jim Rice card was treasured find especially knowing that he grew up about thirty miles from us.

Rice is a throw back to a time when the sport was purer and the players we held with such esteem could be trusted to generally be good guys on and off the field. In his retirement Rice has continued to quietly do positive things in our community particularly with children. This little known story exemplifies what kind of man he is.

Congratulations Jim! this is indeed a well-deserved honor.

One Cool Kid!

One of the primary reasons I started this blog was to not only give folks a glimpse into the lives of exceptional families but also to change perceptions and attitudes toward individuals with special needs. While driving home from the beach Friday I heard this wonderful story listening to CNN. I highly encourage all of our readers to watch the story and then visit Jaylen Arnold's website.

Eight-year-old Jaylen is another one of those heroes who doesn't let his condition stop him from doing something positive for not only himself but other exceptional people. Jaylen truly is battling one of the things that frustrates parents of non-typical kids the most. Instead of anger he's using his personal story to educate others and thereby changing the perception some folks might have about Tourette's Syndrome.

So while I continue sifting through photos of our beach vacation head over to Jaylen's Challenge!

Crabs, Thunder, and Ornery Dolphins

Just wanted to pop in and tell everyone we are indeed doing alright. In fact we're doing really well at the moment since we are still at the beach just south of Charleston, South Carolina. Like last year's family vacation our PKS friends from Michigan joined us for a week of fun and sun and just like last year we are having a blast. Unfortunately we wrap things up tomorrow and head back to Greenville where we will show the Peters family the town.

I forgot my connection cable for my camera to link to the laptop so pictures will be forthcoming. Last August when we were last here together I had prepared Jim & Gretchen for the oppressive heat the Carolinas can cook up that time of year. At the time I told them how June is the preferred time of the warm months to visit. Well we had an unusual cooler than normal week 10 months ago. So Mother Nature has seen to it that we paid for that. Temperatures have been in the 90s with high humidity meaning we've had some pretty intense afternoon thunderstorms the past few days. In fact our alarm this morning was a bolt of lightening hitting one of the palmetto trees nearby. For the most part the Peters have tolerated the weather, even sitting on the back porch during the worst of the storms hoping to catch a photo of lightening hitting the ocean.

Two funny things as I sign off for the day. We've had plenty of interaction with dolphins this week including watching them herd a school of fish yesterday afternoon. That was a rare sight since that usually occurs in much deeper waters. Early in the week I attempted to get a closer look at one of them, an obvious young pup. Mom quickly swam over to let me know that was right out. She got within about 6 feet of me, turned tale, and slapped the water with it drenching me in sea water. She actually did this three times. Yes, my friends I can say without a doubt that I've been flipped off by a dolphin.

But of course Gretchen endured the most embarrassing of our dealing with Kiawah Island's wild side. She was lying on her stomach sunning when Jim noticed a fiddler crab walking across a corner of her towel. When he moved toward it to get a better photo opportunity Mr. Crab chose the closest dark hiding place he could get to quickly: between Gert's legs. So our wonderful friend goes home with a fabulous tan and a case of the crabs. Gotta keep a close eye out when slap that tanning lotion on!