Wednesday, February 28, 2007

Spring Training is Over

Tomorrow I head to Columbia, SC for my first art show of the season. Ben did his usual job of stressing me to the max while trying to prepare for my job.

This picture (taken earlier today) is typical of him when he's healthy. I get the impression sometimes that he knows when I'm headed out of town and The Kid wants to make enough of an impression to make sure I return in a hurry.

Sorry little buddy but its moments like this that make me rush home any time I'm away. You don't have to get sick on my behalf or anyone else's for that matter. In fact there are more folks that will become interested in your story and begin visiting the blog!

I want to thank Christy and Conni (see The Guild over on the sidebar) for volunteering to help out this weekend not knowing Ben's condition. They are part of the reason I love my new job/career. Being a full-time artisan is tough enough but very rarely do you meet a "co-worker" who is unpleasant or unwilling to help you out in any way. I do believe we are all a connection to the best part of our American past when neighbors were actually neighbors and those friends protected you like a member of their own family.

If you get the opportunity to meet these ladies or any of my friends that sell their art for a living know that they are awesome folks with wonderful families that support them. We are proud of what we do. Their art might not be your cup of tea but those artists would love to share that tea, coffee, beer, or glass of wine (hint, hint) with you to discuss their work and learn what you might be looking for. I promise we'll give an honest opinion and whether you like it or not, you'll learn something good. We're all good folks.

Anyway, this may be the last post you see here until Monday. Know that all of you are going to be on my mind just as it will be throughout the next six months. Trust me when I say that I will be checking on my Blog Buddies often. I'm an addict and can't stay away that long.

A Painting from Ben & Bennie No Longer for Sale

Title: "A Puppy for Moosh"

Size: 8" x 10" on canvas panel; standard frame size.

Price: SOLD (for the regular readers I'll let you guess who to)

Just a note to Casey, I'll have it in the mail the first of the week. The colors reproduced by Blogger do it no justice. It is pretty darn awesome when viewed in person. I've had both nurses and a friend try to bribe me for this one. The cool thing about this painting is that it is mostly Ben's. All of the blue color is Ben's work! It was absolutely amazing to say the least. Remember I get to do a mural for Moosh one day when your hubby gets rich and famous.

Tuesday, February 27, 2007


Any trained artist will tell you that perspective is a fundamental element of the creative process. Basically (and this is a very basic definition) it is how objects appear from one's eye in relation to distance and location. For instance, if were to do an architectural rendering I would make darn sure that every edge of any linear object (the eaves of roofs, window sills, tops of a door frame) would all intersect at some finite distant point. Being more or less an impressionist painter I "distort" perspective by twisting and turning the objects upon the canvas in such a way to give subjective meaning to the completed artwork.

And it is that fundamental element that sometimes only another artist can identify and speak volumes about to a fellow artisan. This generally occurs when a painter such as myself gets stuck in a rut, runs into a composition problem, or just needs a creative kick in the ass. We seek another trusted comrade who can reinterpret some of those fundamental elements so that we may move forward with our art.

Such was the case when I opened my e-mail this morning. My dear friend, Conni Togel, shared some thoughts with me in regards to A Work of Art. I received permission from her to reprint most of it here because I honestly believe all of us can benefit from her wisdom. so I'll let the teacher speak:

So sorry to hear about Ben’s health problem at the moment – give him an extra hug and then go have Joan give you an extra hug, right after you’ve given her and Jessie an extra hug.

Questioning God is not a bad thing - in fact, I tend to think God is intelligent enough to prefer inquiry to ignorance.

I cannot imagine quite what life is like for you, though your blog really does bring a lot of heartfelt info to the world about living with an exceptional child – btw: Ben seems to be exceptional, exceptional or not.

And THAT is where most likely your “why?” answer will be found: special people get special assignments (and special kids) - your situation is indeed a toughy, but through all of the medical things, and financial things, and the stress caused by the combination of all of the above, there is one thing that shines through and not only touches your heart, but now that you have your blog, also that of many others: Ben and the love his family has for him. If that ain’t a good reason for “why” then I don’t know what is. Because Ben. Enough said...

I’m sure you would have chosen a different life situation for Ben even if you would have had to give your life to make it happen – but how involved in Ben’s life and in your family would you have been if he had been “normal”? See, you might have missed just how exceptional Ben really is if he was just a normal kid next door. Jessie and Ben would have fought like cats and dogs over the remote control of the tv, he might have left his dirty socks stuck in the couch cushions, might have forgotten to put the toilet seat down, might have lived solely off of Cheetos and Mountain Dew, Joan might have turned into a nagging wife (not many women don’t after while of being married to a guy – and yes, any guy :o))) ), and you might have become a 9-5 suit in an office somewhere, ...probably not, from what I’ve been reading about you and your family, but you get the idea...

Instead, Ben came along – and gave “normal” a whole new spin. Not always a fun spin, but spinning around will always give you a chance for different viewpoints of things. And it gives others a chance to see you from different angles as well – not that bad of a thing, really.

So when you start asking God “why me?”, my guess would be: because God shines through Ben, and he wanted it to shine on you. Just enjoy the warmth, and see how the shadows make the colors brighter.

Enough preaching to the choir here – don’t know if this was any kind of help at all, but those were my thoughts about your post yesterday.

I'm looking forward to seeing Conni and her husband Peter on Thursday.

Ben Update: He is doing remarkably well. His doctor agreed with me that the shunt was definitely not the culprit and that Ben evidently was hit by the same stomach bug that has been filling up his office for the past week. He did not see the need for IV fluids and Nurse Jenny did an excellent job of increasing Ben's fluid intake throughout the day. Although the feeding pump is set at a slower rate of feeding than normal, Ben is now receiving his normal mix of nutrition.

He's been playing and laughing this afternoon. In fact we're having a hard time convincing him to rest. No seizures. No dry-heaves. Thanks for the prayers. Obviously they work.

Monday, February 26, 2007

Ben Update - Monday

Joan drew the first shift last night per Ben's choosing. That was unfortunate for Mommy but much good came from it. Those that are closest to us know that Ben generally gravitates to me when he's not feeling good or wants comfort in facing a new situation. We attribute that to me pushing Ben's limits and the sheer fact that I'm around him so often. It was indeed heartwarming to see Ben put those little arms up toward Joan last night as if he were saying, "I need my Mommy tonight."

Long story short, the little guy basically dry-heaved through the night. Although he had two significant seizures neither were as powerful as what we saw a few weeks back. By the time Lisa arrived this morning Ben was calmer and actually trying to function as normal. He's been able to digest Gatorade and a little ginger ale without the nausea; not a lot but enough to keep us from heading to the ER for IV fluids.

Another strange but positive change: the darn shunt is now working normally as far as we can tell. Even so we're headed to the pediatrician tomorrow morning for some blood work and to schedule an appointment to meet with the neurosurgeon who installed Ben's shunt just in case. At this time everything is indicating stomach virus. In fact I discovered this afternoon that there is a pretty wicked one that hit Jessie's school late last week.

Thanks for the good thoughts and encouragement. You just don't know how meaningful they are. Trust me, when and if the time comes they will be reciprocated.

Sunday, February 25, 2007

Ben Update

Ben started throwing up again today along with the expected seizures. Joan's worst fear is a shunt malfunction and I'm beginning to believe it just might be true.

There is a "valve" just behind his right ear that only I have the stomach to check and I can't make it drain like it normally does. If this is the case then Ben has to go back to the hospital for a new shunt. The idea of him going under the knife again scares the living shit out of us.

For information sake the shunt drains extra fluid from Ben's skull into his stomach. I've hopefully thought all along that the shunt was not not the problem. If that is indeed the culprit then Ben is in for another pain-in-the-ass hospital stay right as the art festival season kicks in.

That is the least of my worries but it's a big part of our income. Sorry for the F-bomb but FUDGE!

****My Spew****

Why does God do this to His most precious? I'd gladly take the suffering on my own. I've sinned against Him more than Ben ever will. Is this my punishment? I know He exists but does He really care? Jesus teaches us that the little ones are His favorites. It's no secret that God is a shit in my book but how can He let shitheads like name-your-latest-child-molester roam free and parents like us suffer and suffer and suffer? I don't get it. I really don't get it.

I really try to keep from being agnostic but it continues to amaze me how God goes to great lengths to prove me wrong. What an incredible douche bag. I honestly hate am very pissed off at Him. Whatever It is I really don't want a part of it anymore for the time being.

Saturday, February 24, 2007

The Thinking Bloggers Award!

When I started this blog I had no intentions to use it to boost my ego unless you wanted to tell me how awesome my son or my family or my art was. Zero competition was the word in this blogger's mind because there's just too darn much of that in the real world. And yes, I had done my research and saw those little buttons on the sidebars of my future fellow bloggers' pages. They seemed as frivolous as a modern day beauty pageant.

Awards like that are meaningless to me for a simple reason. How do you judge someone to be Miss America or Miss Possum Kingdom (yes, there is a community nearby that goes by that name) or Miss pick-your-location by how she looks in a bathing suit? Or is it the popularity type contest you had in high school which you chose "Most Likely to Succeed?" Where is the depth of discovering what that individual is about? What makes that individual special besides good looks or a huge blog roll? Are they seriously wanting world peace or just another memory to clip out and paste to their scrap book?

Well today I was "tagged" so to speak. Kyla chose me as a recipient of The Thinking Bloggers Award for this post from a few days ago. When I read the reasoning behind it I began to understand that this particular award had much more meaning than "Best Blog of the Day" or "Best Humor Blog of South Carolina 2006." There is some incredible depth in being chosen by an individual fellow blogger.

Don't get me wrong. The awards most bloggers receive are justified and well-deserved. After all we all know how tough it is to spill our guts on a regular basis to readers we've never met and have them comment back as to how that spewage is received. And I'll be honest that my self-worth got the best of me last month when I asked one of the folks mentioned a bit later to literally critique this blog.

So I am humbled by this particular accolade. It was this story that moved Kyla enough to "nominate" me. I truly wish I could nominate her back because she and her husband's journey (a well-named blog) are an inspiration for our journey. the best part of this is that I get to introduce you readers to 5 more blog posts to receive the award. In fact these are the rules:

1. If, and only if, you get tagged, write a post with links to 5 blogs that make you think,
2. Link to this post so that people can easily find the exact origin of the meme,
3. Optional: Proudly display the 'Thinking Blogger Award' with a link to the post that you wrote (here is an alternative silver version if gold doesn't fit your blog).
I must say this was extremely difficult because there is so much written within the pages of my blog buddies that would be worthy of the challenge. But the rules say I can only choose five. So here are my Thinking Blogger Awards (in no particular order):

1. The wonderful writers at Original Man challenge me daily. They are a "family" of African-American bloggers that I've grown to love and admire a great deal. They pull no punches in regards to living as life as black Americans and stereotypes they still face. There is honest judgment and discussion of their own (past and present) culture but more importantly the bloggers write about issues that face ALL of us like the Sun King Poet's Dust in the Wind. I just cannot say enough about this blog. It is imperative reading for me.

2. I find Casey, the writer of Moosh in Indy , to be a terrifically funny writer. She's the mother of the The Moosh who is toddling quite well and the attitude to prove it. Her husband is currently in law school which presents some unique financial challenges. Casey recently wrote a very poignant piece entitled Meet Aunt Cheryl that proves just how important it is to look beyond someone's out appearance to find the real person inside.

3. Cynthia is a middle-aged mother of an adopted 2-year-old boy. Tsukismom Speaks shares her thoughts in raising her son as a single mom and along the way she posts some of her brilliant poetry. Oh yeah, she is white and her son happens to be black. Race and Adoption reveals one of the most frustrating aspects of their journey.

4. If you've read the blog for any length of time you'll know why I have a deep respect for and connection with Redneck Mommy. The poor lady regularly backs into snow drifts, does her house-cleaning with a shovel, and occasionally keeps dead livestock around just for the thrill of it. She wants you to believe that she is the Lucy Ricardo of The Great White North. What you may may not know is that she harbors a heavy heart. Choosing one of her more "thinking" entries was most difficult (there are so many) but Invisible Man seemed to be the obvious choice here.

5. And last but definitely not least I had to find something of Jeni's. She began An Editorial of Life about the same time I started blogging and her posts are a must read for me each day. Let's just say Jen tells things like they are which is to say she's a sassy young mommy with and attitude. The Mamas & the Papas is an humorous look at a motherhood experience that my wife really identified with.

So there you have my choices for receiving The Thinking Bloggers Award. I'll very interested in seeing and reading who you all have chosen.

Friday, February 23, 2007

Ten Things I Think This Week

1. Despite a touch of a cold Ben has had a great end to his week. The Kid is obviously feeling better because he has been WILD! I'll be sure to capture some video this weekend particularly of his huge smile. He has this thing now where he has the usual gaping grin but sticks his tongue out through his "cleft upper gum." Funny stuff.

2. For some reason I want to use black in my paintings for the very first time. I have no idea why. Should I?

3. I am so deeply in love with my family that I could not breath without them. I have the two most wonderful children in the world and the incredible wife to prove it. Perhaps this powerful thought has something to do with hitting the road next week?

4. I'm addicted to another website that is hysterically funny, stupid, argumentative, clever, non-politically correct and is the brain-child of one of my very best friends in the world. Oh yeah, we do occasionally talk about football. It is in transition at the moment but check out The New and Improved Unofficial Furman Football Website. You will have to register to fish around some of the forums but it's worth it.

5. I miss Redneck Mommy visiting and commenting here. I just can't seem to push KimmyK's buttons like she can. It seems like forever since anyone here at The B&B has had the opportunity to talk about fish or Mexican dildos or even good old-fashioned potty talk. I honestly have to say that she make me a much better blogger and more appreciative of my time with Ben. Note: I have a secret I'll reveal tomorrow that just might stir the pot.

6. I really wish CNN would cut out all of the freakin' Anna Nicole Smith coverage. We have Iran asking for another Bush invasion (heh heh, see how easy it is to squeeze something like that in? Oops, I did it again), Hilliary and Obama already in a cat fight, and freakish weather out in California driving Creative-Type Dad nuts. And yet all we get to watch are lawyers do what they do best: make a mess even messier. Plant the bimbo already! And for God's sake do some DNA testing and pick a father! Dang, she got around.

7. Speaking of bimbos, am I the only one finding the latest Britney Spears episodes absolutely hilarious? I'd pay good money to see her show up on SNL and tear up up photo of Pat Robertson. The Pope's been done before so for the sake of redundancy she'll need to use another religious icon. I think Pat fits the bill.

8. I love boiled peanuts...with a nice glass of Chardonnay.

9. I want some props from our female readers in the Blogosphere. Yours truly went to the grocery store last night for a couple of items including panty liners (Always...dri-weave...long). And yes, I saw that acne-infested teenage brat snicker as he dropped the box on the floor before he bagged them just to draw more attention from his buddies at the other lanes. I knew what he was thinking too. "Man, I'll never be caught buying feminine hygiene products no way no how, ever." Right, kid. That'll exactly be your motto if you want to stay single the rest of your life.

10. Sure signs of Spring are showing up everywhere. Besides the balmy 60 to 70 degree weather, we have our first nest of bluebirds in our backyard. Big fat robins are congregating around the house. The buds on our dogwoods and Bradford pear trees are about to burst. Oh yeah, the price per gallon of gas just went up about $.20. No snake sightings. Still too early but we'll keep you posted!

Thursday, February 22, 2007


There is that moment that someone close to Ben really connects with the way he thinks and behaves. Nurse Lisa met that moment yesterday afternoon. I have no idea when it happened. Was it the early morning hours when she was getting Ben up for the day? Was it while she bathed him and he shivered from the cold bath and then smiled as he was wrapped in the warm towel? Was it during those fun moments he was splattering paint all over her, himself, and our former dining room? I don't think so.

More than likely it was one of those moments she was engaging Ben and asked what he wanted to do. Ben had someone at his full attention and was ready to tell her where, when, and how things were gonna get achieved. And she heard him.

I did my usual thing and walked Jessie home from school. as I walked back upstairs to the studio I hear screams of laughter downstairs. So I check on things and find my boy laughing hysterically at the two clowns entertaining him. What a beautiful sight.

As Lisa was leaving she made that comment. "You know, Ben is really trying to communicate with me right now. I mean I can sense a determination in him that I've never noticed before." And as I briefly watched Nurse Jenny helping Ben paint today I could see the delight in her eyes as Ben directed the scene around him. He smiled. She smiled. I nearly wept.

How can a little boy with a vocabulary of so little bring so much joy to this world? Simply amazing.

Perfect Day!

I had no idea how addicting this blogging thing would become when I started last October. Neither did I know how many many wonderful folks I would get to know and who would become dear friends. I can also say I am very pleasantly surprised at how gifted my blog acquaintances are in writing about your life experiences. As you all bare your souls in the Blogosphere I am more challenged than I've ever been at being a father, a husband, a son, a brother, and an artist.

All in all I am very thankful that me and Ben did this. We as a family feel a sense of love and support that somehow was missing before we started. I honestly had two goals when I hooked up with Blogger: tell the world about what an incredible exceptional son I have and sell enough artwork to get us through the winter months. It is quite obvious those goals were met for beyond our expectations.

Today was indeed a perfect day here in the upstate of South Carolina. The temperature peaked just shy of 80 degrees with a warm breeze that erased whatever humidity was in the air. It was a not-so-subtle reminder that my art festival season essentially begins a week from today which means more time spent in the studio and less time blogging. Plus with the warmer weather expected over the next week or so my hall-pass away from Landscaping 101 is about over.

I'll still be a blogging fool as time allows over the next few months. Maybe one of these days we'll be able to afford a WiFi laptop hook-up so I can keep up with you great folks while I'm on the road. Until then I'll still be popping in on your blogs and soiling them as much as you'll let me get away with. And who knows what kind of stories I'll be able to share from my journies?

A Painting by Ben & Bennie!

Title: "My Big Heart"

Size: 8" x 10" on canvas panel; standard frame size.

Price: SOLD

To purchase this painting please e-mail me at . We accept PayPal, Visa, Mastercard, and personal checks.

Wednesday, February 21, 2007

Ben's Latest Art Adventure!

You never would've known this child was running a fever of around 101 most of the day yesterday. He was WILD! Lisa and Ben discuss color choices.

Ben decides on purple.

"I'm a mess!"

"But I'm a happy mess!"

Ben was all smiles today! Maybe he just needs to paint more often.

Ben works hard on his latest painting.

Tuesday, February 20, 2007

We Got the Funk

Yep, the evil Mothership has landed and not Dr. Funkenstein's version pictured over to the right. The aliens are shooting us with their Bop Guns and there's nothing Bootsy, Sly, George, The Ohio Players, or The Isley Brothers can do to save us now.

We'd really like to Tear the Roof off the Sucker and Give Up the Funk but we're using our Flash Light to check children's throats (and our own). Two of us are running fevers that make us think of Fire and that swimmy-headed feeling of Jessie's has her on our own Love Rollercoaster.

Maybe Ronnie Isley can lead the way and Fight the Power. Or maybe Maurice White and the rest of Earth, Wind, and Fire could arrange for a Getaway. At least they can explain That's the Way of the World. And at the very least there's good old Nyquil which will let me and Joan enjoy our night-time Fantasy and we''ll be better on Saturday Night.

Anyway, I hope every one else is feeling better these days. It'll be 70 degrees outside in about 48 hours and in the immortal words of The Brothers Johnson, Ain't We Funking Now?

Did I give away my age again? Skp, I dedicate this post to you my friend! Not the sickness part but the memories of some cool R&B.

Monday, February 19, 2007

Ben Talks to a Dinosaur

Ben: "Hello Mr. Dino! Are you happy?"

Dino: "Well Ben, I'm feeling a little old these days. Lots of people stop and laugh at me which is cool. They touch me just to make sure I'm not scary but they just pass on by and never talk to me like you do."

Ben: "Well, Mr. Dinosaur...may I call you Dino?"

Dino: "Of course my little friend!"

Ben: "People are afraid of me too. I don't have sharp teeth and I'm certainly not going to eat them. I actually think you are pretty cool!"

Dino: "Well thank you Ben. I sometimes have children afraid of me too. I can't hurt them because I don't have real teeth. I have bright colors and just sit here wanting little folks like you just to touch me and pet me. Me and the rest of the toys talk about things late at night when no one is around. I wish more little friends like you hung around here."

Ben: "I'm so sorry Mr. Dino. I think you are really cool. I'd hug your neck if I knew I wouldn't drool on you. My Mom and Dad worry about things like that. I like you a lot and you'd make a great friend. I just don't know where we'd put someone as big as you."

Dino: "That's okay, Ben. You made me happier than I've ever been. I can't wait to tell my buddies in the store tonight what a neat little friend I've met. Please stop by anytime you come to the mall. Me and you are friends forever! I'll see you next time!"

Ben: "It's a deal!"

On the Palette

Brilliant Purple: Although Ben had some significant seizure activity throughout this morning's early hours he (and we) seem to be coping with them a little more confidently. I brought him into our bed for a change which gives us much more room to stretch out. The problem is that Joan and I sort of "fight" over who gets to snuggle with Ben. Unlike Jessie who seems to practice her dance class maneuvers during her sleep, Ben curls up into a neat little ball of love and barely moves. It also seems to comfort him seeing a familiar face once the seizure is over.

Light Blue Permanent: Several of you commented about Ben's fat little feet seen in the video over the weekend. Yes, they are that adorable and soft! Part of the reason obviously has to do with the fact that can't walk on them. But I have to give more credit to my wife and the nurses for washing and messaging them with lotion every day. It's part of his daily routine but it is also hysterical at times because Ben is extremely ticklish! We'll make it a point to get some video soon of us rubbing his feet.

Emerald Green: Tonight's featured music is an icon of Americana music. Billy Joe Shaver is/was one of the secret "Outlaws" of country music. He's collaborated with Waylon, Willie, David Alan Coe, Johnny Cash, and has been covered by a world of other country and rock groups just now discovering his music. Be sure to give the songs "Live Forever" and Freedom's Child" a good long listen.

Now playing on the iPod: Billy Joe Shaver

Sunday, February 18, 2007

Brand New Collaboration from Ben & Bennie!

Title: "Horse"

Size: 8" x 10" on canvas panel; standard frame size.

Price: SOLD

To purchase this painting please e-mail me at . We accept PayPal, Visa, Mastercard, and personal checks.

Saturday, February 17, 2007

There is no explanation for the connection I have with Ben. Like any other child he wants to be around others. Given Mom has been at work and Jessie at a friend's our connection became somewhat "strained." I need to paint and so does Ben. There is only so much Sponge Bob he can tolerate before the meltdown occurs. I can't stop working to let him participate. After all it takes much time and energy to prepare him for his artistic endeavors. And so he fussed until he fell into a deep sleep listening to Waylon Jennings. You really don't know how difficult it is to work with this incredible person in the room.

Meet Ben's Beaver!

Ben and Bucky are off to Never Never Land! I just might join them. Have wonderful weekend!

Friday, February 16, 2007

Top Ten Things Heard Today (so far)

1. Me to Nurse Lisa: "Have I ever told you the story of how Ben got his first beaver?"

2. Up against the wall Redneck Mother
Mother, who has raised her son so well

He's thirty-four and drinking in a honky tonk

Kicking hippies asses and raising hell.

"Up Against the Wall Redneck Mother" by Ray Wylie Hubbard and sung by Jerry Jeff Walker

3. "You know we have so much in common. We wear glasses, we're about the same height, our hair is the same color, and we have the same sense of fashion...which is probably most important." 10-year-old Jessie commenting about her friend Rachel spending the afternoon with us.

4. And if you're rated X you're some kind of goal every man might try to make
But I think it's wrong to judge every picture if a cheap camera makes a mistake

"Rated X" by Lorretta Lynn and sung by Niko Case

5. "Be sure you tell Lisa I had nothing to do with that beaver." On the phone with Joan.

6. She drove up across the yard and through his mama’s garden
Didn’t touch the brakes, she slammed right into his Chevrolet
Tossed out his clothes, boots, Bud cap, and signed Dale Jr. poster
Then shot the whole mess neon green with a can of DuPont spray

"Intentional Heartache" by Dwight Yoakam

7. " Two!" Ben in response to me trying to remember his age when he got his beaver.

8. Jump up, look around, find yourself some fun
No sense in sitting there hating everyone
No man's an island and his castle isn't home
The nest is for nothing when the bird has flown

"Teacher" by Jethro Tull

9. "Which road was it you take to get to Hell Hole?" Phone call from my good friend Freebird.

10. If we lived in a world without tears
How would bruises find
The face to lie upon
How would scars find skin
To etch themselves into
How would broken find the bones

"World Without Tears" by Lucinda Williams

Thursday, February 15, 2007

Don't Be Afraid

As we pass each other at the mall or on the playground or at the doctor's office I can see you staring at me. Perhaps I smiled back at you but you turned away so you you couldn't see my eyes. I sense fear.

I understand fear. I know it by the needle that jabs into my skin. I know it by the solitude of the x-ray room. I know it when my Mom leaves for work each morning. I know it when I see my sister cry. I know it from the uncontrollable muscle spasms I've been having lately. I know it when the lights go out at night.

But why should you fear me? You can't catch what I have unless it's a hug or a big sloppy wet kiss I am always willing to offer. Are you afraid of my drool? I do that a lot but it's nothing to be frightened of. In fact my mouth is cleaner than just about any other child's. Since I wear a diaper I don't touch my privates so there are fewer germs on my hands. I can't pick my nose. And my Mom and Dad rarely let me touch our cat or dog and when I do they wash my hands immediately. I'm willing to guess that I have the cleanest drool around.

Are you afraid of the machines around me? They can't hurt you since they don't hurt me. In fact they are there to make me healthier. I know they make loud noises but so do most 2-year-olds.

Is it because you think I'm different or strange? From what I can see everyone is different. And strange is reserved for the noises my dad makes after eating Hispanic food.

I hear my Dad play a song sometimes. The lyrics* go:

See me
Feel me
Touch me
Heal me

I think that pretty much sums things up. So when you pass by next time, stop and say hello. Look at me for who I am and not for what I am not.

* From the soundtrack Tommy by The Who.

Wednesday, February 14, 2007

Happy Valentines Day!

Here's the summary:

1. Ben was a trooper and made it until 1 AM giving Joan an extra hour of sleep this morning before having to take her shift to arouse Ben.

2. I ended up awake early anyway to keep Ben somewhat alert while Joan got herself and Jessie dressed. We also checked the abscess on Ben's thigh. It had made it to the surface of his skin. This was a good thing.

3. Joan and Lisa took off for the EEG. I'm not sure how many of these Ben has had but he's slept through every one of them including today's. By the way Ben also slept comfortably last night.

4. Joan, Ben, and Lisa then made their way across town to see the pediatric surgeon. By this time the abscess and "blown" so there was no need to have it drained.

5. After receiving the care instructions for the sore it was back over to the neurologist to discuss the seizures and the EGG. For the first time there was a slight indication of where at least one of the types of seizures Ben has been having is originating from. We also had gave a very descriptive account of Ben's motions as he is seizing. It turns out that this verified the EEG findings for the milder type of episode but also gave the doctor a good indication of where the stronger seizures are probably coming from. We will now consider a couple of different drugs Ben could take should the seizures continue.

6. Vickie, you'll love this. Ben completely entertained Dr. Morales! He smiled, he laughed, he tried to get up, he "talked." For those that are unaware, this was the neurologist that wrote Ben off just before he turned two as being nothing more than a vegetable. Ben even made Morales laugh.

What does all this mean? We know absolutely nothing still about what triggered all of these episodes about ten days ago. Was it the teething? The abscess? A virus? A growth spurt? Chances are we'll never know. The good thing is that we do now have a plan and a trustworthy neurologist back on our "team."

The plan now is to see if the seizure activity decreases or at least stabilizes over the next few days and weeks. If they continue to persist at the current level we will have no choice but to begin drug therapy. We're still not real happy with the thought but it will be best for Ben and the rest of the family's sleep patterns. We've also had our fears alleviated that the seizures might cause more neurological damage to Ben.

All in all Ben has had the best day he's had in about two weeks. It was tough for me and Joan to squeeze in that short nap while listening to Ben and Lisa laughing and playing downstairs. I guess we'll call those Valentine's Ear Candy.

Tuesday, February 13, 2007

Long Nights, Impossible Odds

It's been a very long day and it's not over. After another night of some of the strongest seizures yet we made the decision to move forward with a more aggressive approach in getting the awful episodes under control.

With Jenny here today I was able to get some much needed sleep from about 8 until noon. It's now been two days without a decent meal for me or Joan. Our house is a complete wreck and neither one of us has the energy to do something about it.

We decided to discuss all of our options with our pediatrician first. Of all the doctors that have worked with Ben, Dr. Flanders knows as much about him as Mom and Dad. Today's visit was actually our second with him in the past few days. Joan took Ben in Saturday to have him checked over and to see if the teething issue was indeed the main culprit. We also wanted to get a medical opinion on a small abscess on his left groin. He gave Ben an antibiotic for it and we treated the area with warm compresses throughout the weekend.

Today the area looked much worse and by the time of his appointment he had a small fever. Dr. Flanders suggested checking Ben into the hospital an idea Joan and I are very much against at this time. Flanders had very good reasons for us to consider it which mainly has to do with how quickly we can see the neurologist. It usually takes several weeks to get into see him.

In the end our pediatrician is well-liked and respected in our community. He made some phone calls, pulled his usual hat trick, and we're now full of morning appointments tomorrow. The bad news is that I will up late into the wee hours to make sure Ben gets only 5 hours or less of sleep overnight. Evidently they want him very "active" for his EEG tomorrow. He's than off to see a pediatric surgeon to discuss draining the area in his thigh. Good times, friends, good times.

As always we would appreciate some good thoughts and prayers from anyone willing to send them Ben's way. I'll obviously give an update again later tomorrow. Who knows? I might even stay up all night posting dirty jokes here...

Oh yes, I wonder who can be the first to guess where the title of this entry comes from? I'm gonna lay odds that KimmyK will guess it since she's so close to my age.

Monday, February 12, 2007

On the Palette

Brilliant Blue: Interesting night at the Grammy's yesterday. It was so cool to see The Police back together again. Stewart Copeland and Andy Summers have lived in the shadows of Sting for twenty years now and have never garnered the notoriety they should have for making the band what it was which is nothing short of brilliant.

Putting the trio together lit a fire under Sting's arse for the first time in awhile (twenty years maybe?). I own nothing Sting has recorded solo and probably never will. I'd love to see them in concert again but ticket prices have gone through the roof since the early 80s when I first saw them live.

The rest of the show was extremely disappointing with the exception of the trio performance of Corinne Bailey Rae (Lord, she is HOT!!!), John Legend, and John Mayer. Whoa Nellie! That was THE highlight of the night!

As for The Dixie Chicks, I have nothing good to say about them. I truly despised their smirking attitude throughout the night. I'll be honest and say that I'm not a fan of George Bush but as entertainers, they have a job to do which is entertain. They didn't need some snide political remark to excite their fans in a foreign country. Their talents and music should stand on it's own. The backlash they received was justified and very much expected. I find it disgusting that they have essentially flipped off the country music industry which made them famous.

Best line of the night goes to Jamie Foxx who quipped that Snoop Dog had left the building when he heard The Police were there.

Acra Blue Violet: Ben's seizures are becoming more frequent. In fact Joan took him to our pediatrician on Saturday to check on the situation. A long story short, we don't know what is triggering them. I will freely admit that I'm a bit frightened at the situation at hand.

Ben threw up everything he ingested yesterday afternoon. Today he alarmed Lisa, one of our trusted nurses, several times with episodes that included him turning blue due to lack of oxygen in his blood stream. He's now back on full-time monitoring so we can tell if he's in trouble. This is very hard on me and Joan. This is actually the first time in two years we've had to take such a drastic measure to insure Ben's health. The little guy is not his normal self and it greatly concerns us.

More than likely we'll be visiting a neurologist here locally that I'm not very fond of. He is the one that pretty much wrote Ben off when he was two, given the MRI information. I would prefer to not be there when he sees my son but I have way too much at stake to hear things second hand.

Red Oxide: It's hard to believe that I'll be setting up my first show of the year in a little over two weeks. I'm very excited but at the same time I'm a bit worried given Ben's condition at the moment. We need the money but I certainly don't want to put undo pressure on Joan knowing how much we need her job and more importantly her health insurance. We need some good thoughts these days and I know most of you will gladly do that.

Cadmium Red: I do want to say how incredibly impressed and inspired these days from reading your blogs! Honestly I can say that I'm quite envious of your writing abilities. I feel honored to be included on your blog rolls. I can also honestly say that I've been challenged as a father, husband, son, artist, friend, and acquaintance even more so than when I was in college. I just want to thank you for being the wonderful people you are and I will always appreciate your thoughts and words!

Sunday, February 11, 2007

Snakes on a Plain (Part II)

So Jessie and I bid our friends farewell and headed back down the Davidson River Gorge toward home leaving the wildlife and beasts of the forest (I'm not referring to my friend Cletus, by the way) to their rustic habitat. Or so we thought.

As soon as I got into cellular range which was still a good hour away from Greenville my phone started ringing like Sunday morning church bells. Several messages were waiting for me and all were from Joan. She was obviously calling to express her worry and concern for the safety of her first born child. Wimp.

All weekend Jessie was brave and courageous in her exploration of Flat Laurel Creek and the summit of Big Sam Knob. She whittled her own walking stick, learned how to pick up crawdads, and even cooked her own meals over a primitive campfire while her proud father stood guard to protect her from the bears, mountain lions, and coyotes while making sure Cletus wouldn't pass out on our tent. After all the adults were packing enough heat to blow away a whole pack of insurgent coyotes.

So it came to pass that I listened to my first message expecting a mommy crying, weeping, and gnashing of teeth because I didn't check her daughter thoroughly enough for ticks. My smirk was wiped away by eight words: "Bennie, that damn snake is in the house!"

For the next hour Joan and I played phone tag while I drove through the cell-phone-drop-out-center of the universe know as the western North Carolina mountains. Basically this is what I gathered from those brief conversations:

1. Ben not eaten.
2. Joan not eaten.
3. Puppy not eaten.
4. Cat, unsure.
5. Pet gerbil currently being used as bait.
6. Joan may need medical assistance shortly.

So about an hour later the wilderness wanderers drove into our driveway to meet Joan standing outside holding Ben. Now I must say that I was just a bit proud of wife in most of her handling of the crisis. She was actually laughing hysterically at the situation at hand. This was not the reaction I was expecting.

Generally humans of the females persuasion do not like snakes. I'm quite sure I read historical literature somewhere in regards to the creation of man and whatnot. As I recall a serpent disguised as David Hasellhoff talked this woman named Eve into eating some sort of forbidden "fruit." Since this is more or less a family blog I can't get into more intimate details but let us say that hubby was not amused. Being a female just a tad on the spiteful side, Eve gave Baywatch boy the boot (along with the look) and the rest has been genetically reproduced through the following eons. But I digress.

Evidently Joan woke up early Sunday morning feeling quite chipper since her two oldest children were far away and not pestering the living crap out of her. After her normal early morning activities (pee-pee and caffeine) she made her way down our upstairs hallway to our bonUs room (opps, studio) to check e-mail and play a little Sims. As she approached the doorway she noticed someone had left a belt lying in the hall. As her sleepy eyes began to focus on the belt she noticed the buckle flickering it's tongue at her ankle. I'd pay a great sum to have been a fly on the wall at just this moment.

The picture just above is the wall from our bonus room to our guest bedroom. We now have established the fact that Black Betty was indeed six feet long since Joan's foot was about even with door frame and Betty fully extended, had her tail in the entrance to said bonus room. At this point I'm almost positive that Joan panicked. I'm not quite sure about it but my gut tells me that is indeed what happened.

What I'm about to tell you was The Big Mistake. Ladies afraid of reptiles, you need to read this carefully because Joan will tell you it was The Big Mistake. Joan took her eyes off of Black Betty. Her first instinct was to protect our son and the puppy even though they were actually never in any danger. I'm guessing her dash down the stairs to Ben's room took maybe 2 nanoseconds. By the time she had set up a defensive position in the den with fire place tools in hand (remember I had the weaponry) she realized the snake could now be anywhere in the house! Bummer.

So dad's task is now trying to find where Black Betty was hiding.

We began the extensive search of the house which lasted all afternoon and even into the early evening hours. Our serpent friend was nowhere to be found. My sister-in-law knew a guy who worked at our local zoo and he came on over promising to find Betty and relocate her to a much more normal habitat. Interestingly enough he looked like David Hasellhoff.

After another extensive search we gave up. According to our newest best friend Betty had evidently found a nice location to lay her eggs. People I cannot make this stuff up. Before leaving he suggested we leave a pan of water in our hallway because Betty might get thirsty given her condition and that might be a way to catch her. He also found where she had made her way into our garage and climbed up our back steps into out bonus room - a door we had thought we'd sealed because previous varmint problems.

Needless to say, Betty was never found. Joan slept with a .38 revolver under her pillow for several months afterwards. I still laugh at the thought of me and Jessie sleeping peacefully under a two-man tent in the boonies while Joan slept with an anaconda-sized snake in our house. We have theories about where Betty might have exited our home and most likely she did (although we still tread lightly in our attic three years later).

On her way out Black Betty left some beloved offspring that we encounter every now and then. None of them have ever been found within in our house which makes us happy that the vermin were at Ground Zero (nuder the deck). Jessie has even learned to appreciate Black Snakes and how docile they actually are toward humans. My brave and courageous thrill-seeker has even held and coddled one of Betty's offspring which we named Joan.

And my dear Joan can now tell about Ben's butt warming a baby Black Betty.

Saturday, February 10, 2007

Snakes on a Plain
(Part I)

Take a nice long look at our friend over there. I found her lying in our backyard sunning in the late-Spring sunshine late May of 2004. I was actually working in my office and from my second story window noticed something odd next to our garden hose. Since I grew up on a farm I had seen plenty of these hanging around the barn waiting on some unsuspecting rodent to happen by.

This particular snake is quite common here in the Southeast and serves a great purpose in controlling unwanted critters. This particular Black Snake (also known as a Rat Snake) is a female. I'll explain a little bit later how I know this.

She was minding her own business that morning but we had a fairly new puppy wandering about the yard and I didn't want our dog to become the lunch special of the day. So I went outside to check things out. She was quite friendly until I started snapping pictures. Before I had a chance to grab her she made a bee-line for the backyard deck and disappeared underneath it. That is when I first noticed several places Black Betty (yes, we named her..."ba-lam-ba-lam") was entering and exiting our cozy backyard retreat.

Let me back up just for a moment. Earlier that Spring we had some unwanted visitors living exactly where Black Betty had escaped to. For those of you that are regular readers you know that we live next to a old farm which harbors a variety of "wildlife," some wanted and some not-so-wanted. So we're used to finding the occasional drowned field rat in our pool or the Mouse-ka-teers making our garage home for the winter. So I did the usual baiting of rat-traps and figured they had worked for the most part.

Now take a good look at Black Betty once again. It's difficult to tell just how big she is from the picture. The garden hose next to her was an industrial-sized whopper we used to clean our pool deck. I would venture to guess that she was a good six feet long and perhaps three inches thick in girth. Evidently B.B. had found a reptilian buffet under our deck!

So that evening I finally broke the news to Joan that we had a fairly large snake living just outside our back door. Obviously she was not pleased with this news but I pointed out how our varmint problem had gone away and that Black Snakes are generally reclusive so we probably would never see her again.

A hall-pass was given to our new friend and I even cooked out on the grill just to prove none of us would be swallowed whole by B.B.

It just so happened that B.B. showed up just before Memorial Day weekend. I had finally gotten permission from Joan to take Jessie with me on a primitive camping trip for a couple of days. Again those of you who venture here already know I love the outdoors - particularly backpacking and camping in the mountains just an hour or so north of home. The plan was to leave on Friday and return Sunday afternoon. We would meet up with my camping buddies, Cletus and Freebird (you still believe I'm not a redneck?) with Freebird's two youngest in tow. Destination: the base of Sam Knob within Shining Rock Wilderness which covers a good bit of the Pisgah National Forest. Essentially we're in the middle of pristine North Carolina mountains far from cell phones, TVs, radios, even toilets. You can imagine the lecture I received from Joan about bringing her baby girl back home alive. We obviously covered everything from ticks to poison ivey including how to avoid water snakes.

This is base camp for the weekend. Me and Jessie camped in the tent pictured here. We were expecting rain (which we got) so we "tarped up." The "old man's chair" belongs to Cletus.

We broke all the rules within the first 10 minutes of camping. Jessie and the two other kids lived in the creek all weekend.

Proud Dad watches Jessie chow down on some Vienna Sausages: the energy source for true hikers and

Jessie watches Freebird pass out after chasing the kids to the top of Sam Knob (an elevation of 6,000 feet).

Cletus asked us to bury him at the top and take care of Jo-Jo for him.

So me and Jessie had a most excellent weekend on our first Father-Daughter camping trip. We were exhausted and happy! I was so worried she'd hate the experience and never want to do it again. Instead if we even hint about camping (primitive or in our pop-up) Jessie is already stuffing her pack with a sleeping bag and several sets of socks.

To be continued....

Friday, February 09, 2007

On the Palette

Turner's Yellow: We had another night of siezures Wednesday and early Thursday morning. These were nowhere near as powerful as those from about 10 days ago. Actually the episodes could've easily been prevented since Ben's folks thought the other spouse had given the Orajel and Advil before bedtime. After a groggy day on Thursday for the most part Ben was back to his typical jovial self.

Manganese Blue Hue: I promise the black snake stories will be told over the weekend. Yes, there are actually two of them. Both involve my wife and Ben being not-so-alone in our house with a stranger. Joan will kick off her new blog with the one I mentioned in Ben's 100 Things.

Cobalt Teal: I'm not sure if anyone has noticed but the On the Palette entries include a link at the bottom to some cool tunes I listen to while painting. My head-banging days are done. In fact a bad case of whiplash kept me in pain for about a month after a Def Leppard concert a few years back.

These days I listen to a wider swath of music. Tonight's featured writer/performer is Mr. Chris Knight who I've had the privilege of meeting and talking to at length. Be sure to listen to "Framed" and "It Ain't Easy Being Me" which is my self-chosen theme song.

Have a great weekend everyone!

On the turntable: Chris Knight

Thursday, February 08, 2007

Ben's Black Snake Stories and Whatnot...

Well the cat is out of the bag so to speak. We've created a new blog for Mom to soil the Blogosphere with since I haven't done as good a job as she would've. I think I've heard that before in reference to laundry, cooking, cleaning, and so forth. I'm not allowed to give out her blog address just yet since she's currently working her ass off at her job and can only find time to read just a few of the brilliant entries all of you make.

Suffice it to say that Miz Wah is a bit jealous of the attention we're getting here. Trust me when I say that there is no "romantic jealousy" involved because she knows me better than anyone in the world and would laugh hysterically if such a scenario were even contemplated. No, she thinks she can tell a tale much better than me and Ben combined.

I mentioned over lunch today that I was getting ready to tell the Snakes on the Stroller story. The one where Samuel L. Jackson meets me in the driveway and says, "we've got mother-bleeping snakes on Ben's mother-bleeping stroller!" Except it wasn't Samuel L. Jackson but my wife playing Samuel L. Jackson's part. She informed me that I couldn't tell it very well since I wasn't there for most of it.

Well, Mommy Dearest, do tell! I actually was there for most of the story with the exception of the 5 minutes you were staring horrified at the teeny tiny unidentified baby snake asleep under Ben's diaper. Yours truly did our yard a favor and let it back into the wilds (our backyard) instead of chopping it up into one-inch pieces and feeding it to the cat.

Sheesh. This is turning into a story of Biblical proportions!

This is Ben painting with his special brush he can easily hold in his formative days as an artist. You can see how much fun he has painting at such an early age (3 years). I'm sure he's laughing at Mom thinking she saw an anaconda when it was just a baby snake.

An Alarming New Study

In read several news sources each day and many times I spend free moments searching medical sites for new treatments, therapies, or procedures the might be beneficial to Ben . Most of the time I end up just pocketing the information as something interesting or will perhaps pass it along to some folks who might benefit from it.

Today I came across a story on CNN's website that literally made my jaw drop. This study done by the U.S. Centers for Disease Control and Prevention suggests that one in every 150 American children have autism. If that isn't enough to frighten parents there is now evidence that the diagnosis of autism is either growing or has previously been under-reported. The CDC "calculated an average autism rate 6.6 per 1,000. That compares with last year's (2006) estimated rate of 5.5 in 1,000."

The CDC does caution against using the data to establish a national trend because some of the most populous states were not included. However I do see this as something very noteworthy because states like California, Florida, and New York weren't included in the study. I'd be willing to bet that those particular states have much more efficient testing and record-keeping than some of the more rural states used in the study including our own.

The most important issue this study brings into focus is this brilliant quote by Alison Singer who is "spokeswoman for Autism Speaks, the nation's largest organization advocating more services for autistic children."

"This data today shows we're going to need more early intervention services and more therapists, and we're going to need federal and state legislators to stand up for these families."

A few weeks ago during the debating and discussion of The Ashley Treatment I called the disability community "the silent minority." My hope is that studies like this one call attention to the need for more early intervention, more early therapy, and better access to facilities that can help those that face incredible challenges. My gut feeling is that the exceptional minority won't be silent very much longer.

Wednesday, February 07, 2007

Ben’s 100 Things

  1. Ben has a rare genetic disorder.
  2. We knew something might be “wrong” at about 18 weeks gestation.
  3. We thought it was Downs Syndrome.
  4. Ben was born 8 weeks early.
  5. He lived his first 3 months in a Neo-Natal Intensive Care Unit at a Catholic women’s hospital.
  6. He had a “guardian angel” named Sister Theresa.
  7. Ben almost died from RSV when he was 3-weeks old.
  8. He went without oxygen for almost 45 minutes.
  9. This was our first miraculous experience with Ben.
  10. He was kept paralyzed for almost a week afterward to save his life.
  11. It worked.
  12. Ben had an extra digit on the outside of each pinky finger, which is a common anomaly of his syndrome (they were removed).
  13. He also has a nubbin just like Chandler Bing of "Friends" (for those that don’t know it’s an extra nipple).
  14. Also Ben has a double butt-crack that isn’t because of the syndrome – he inherited it from one of his parents.
  15. It wasn’t me.
  16. Ben received a tracheostomy when he was about 2 months old.
  17. That means he breathes through a hole in his neck.
  18. Ben came home on January 3, 2000, one day after his sister’s 3rd birthday.
  19. He slept in a toy wagon for many months next to Mom in our bedroom.
  20. We found out that Ben “coded” 9 times in his NICU stay.
  21. Ben’s family knows more about medical terms than they want to.
  22. From the very beginning Ben’s best friend has been his sister.
  23. Ben’s had a nurse with him almost everyday (other than weekends) since he came home.
  24. He was almost 9 months old before we found out his genetic condition.
  25. We met with his geneticist July 4th weekend to find out he had Tetrasomy 12p.
  26. Also known as Pallister Killian Syndrome (PKS).
  27. There were less than 100 known cases worldwide when we were told this.
  28. We were devastated after given the known literature.
  29. Mom, Dad, and Jessie said, “screw that” Ben’s gonna go far beyond what the literature told us.
  30. A month later he went swimming with Jessie and Dad for the first time.
  31. Ben was already interacting with loved ones and showing quite a bit of intelligence.
  32. Ben has hydrocephalus (shunt put in at 6 months).
  33. Ben had a cleft palette (closed at 18 months).
  34. We’ve lost count of the hospital visits due to surgeries and respiratory issues.
  35. At two years of age Ben had more surgery to correct some problems in his esophagus.
  36. His trache was removed.
  37. He did well for about 10 days.
  38. He ended up back in the hospital where we almost lost him again to RSV.
  39. One again he miraculously survived.
  40. About two months later we noticed Ben making strange “clicking” noises.
  41. It took us about a week before we discovered he had a different sound for each of us.
  42. Ben once again exhibited intelligence beyond what was expected because he developed his own way of communication with his family using those clicks.
  43. Ben has played in the ocean surf.
  44. He has been to Disney World and loved every minute of it.
  45. Ben has ridden a horse.
  46. Ben loves music.
  47. So much so that it’s difficult for me to play guitar for him because he tries to take it from me.
  48. One of his favorite toys is an electronic keyboard.
  49. Ben has been fishing.
  50. He enjoys playing in the sand at the beach.
  51. Ben has been to several baseball games.
  52. And many football games.
  53. And of course all of the pre-game tailgates that go along with those.
  54. Ben, Mom, and Dad have visited our state capital several times to lobby for budget money on behalf of other special needs children.
  55. He has met many state Senators and our Governor.
  56. Ben enjoys watching a variety of sports but his favorites are basketball and auto-racing.
  57. He has seen two movies at the theater: Finding Nemo and Cars.
  58. He’s been in the hospital for four of his 15 Christmases.
  59. Ben began painting as a form of occupational therapy.
  60. It’s now turned into regular activity and it entertains him tremendously.
  61. Ben is fed through a “g-tube” directly into his stomach.
  62. Although he has tasted a variety of foods and enjoys them he still has difficulty swallowing.
  63. Ben has very lax ligaments.
  64. That means many of his bones easily dislocate but immediately pop back into to place.
  65. After fifteen years of this it still grosses us out more than anything else about him.
  66. Yes, you can actually here it “pop” when it happens.
  67. He is very sensitive to sunlight so he wears sunglasses most of the time he is away from the house.
  68. We think he looks cool.
  69. He even says the word “cool” when we put them on.
  70. Ben loves school!
  71. Ben is very camera shy.
  72. Just like several of his classmates.
  73. We don’t know why.
  74. Ben sleeps with a stuffed ostrich named "Ozzie."
  75. His Me-Ma bought it for him in London,
  76. Ozzie (named after the former Black Sabbath singer) looks like he's passed out in a  New York alley after a hard night of drinking.
  77. Ben’s favorite TV program is Teenage Mutant Ninja Turtles.
  78. Using a Passey-Muir valve Ben can actually talk to us.
  79. He is now strong enough to use his voice without the PMV.
  80. The motif we used to decorate Ben’s room was Field of Dreams.
  81. This was long before we knew he was special.
  82. I did a full wall-size mural for each of my children.
  83. Ben’s is a replica of the baseball field built in a corn pasture.
  84. Ben’s original room is now my office.
  85. My office is now Ben's bedroom.
  86. Kevin Costner comes to Greenville every May to play golf (he no longer does this...bald-headed bitch).
  87. We want him to sign a baseball for Ben some day.
  88. Ben has a baseball signed by Hank Aaron.
  89. Ben's Uncle Cameron has given him some awesome collectibles of famous Minnesota Vikings that now grace his wall.
  90. My boy has the most endearing smile of any child in the world.
  91. I don’t mean to brag but it’s the honest-to-God’s truth.
  92. When Ben was born his hair had a spiral pattern on the back of his head that looked like a bulls-eye.
  93. It took about three years for his hair to grow in enough to make it look natural.
  94. Ben had a baby Black Snake sound asleep under his fanny when Mom took him out of his stroller after an afternoon in our yard.
  95. Ben thought it was funny.
  96. Mom did not.
  97. Our boy still makes us smile every day because he smiles first - let that be another lesson learned from a a kid you might think "retarded."
  98. The future for Ben is still unknown.
  99. We think it is limitless.

Tuesday, February 06, 2007

Huge Ben Update

Part of Ben's syndrome includes a late dental eruption. It is now looking like Ben's molars are finally peeking through his gums. Tonight he was beginning to show similar symptoms as last Thursday and Joan pondered this theory. BINGO!

Ben is smiling and ready for play despite needing sleep now. The simple stuff almost always defeats the complicated. I'm just happy to have the return of my smiling boy!

Six Weird, Strange, Odd and Unknown "Things" About Me.

Thanks for the tag, Jeni. I think you're determined to hear about the year I wore Spandex in the mid-80s. Not just yet, my dear. But here are some juicy little tidbits for your entertainment until that time I get plastered enough to reveal my life as a pretend-to-be rock star.

1. I sleep with a fan on next to the bed. I’m certain this habit started after we moved Ben to his current bedroom downstairs. For the first couple of years of his life we had a concentrator and compressor running 24 hours a day. In fact we had two sets of these. The other set was kept downstairs for Ben’s daytime activities. When those machines were moved I couldn’t stand the complete silence. I needed white noise!

2. I have a penchant for things like Vienna sausages, smoked oysters and pickled okra. Yes, this grosses my wife out. It’s inherited. My dad would often gobble down a whole can of pickled herring in mustard sauce as an evening snack. My mom leans toward a more femininely scrumptious snack like pickled eggs and deviled ham. And for lunch on camping trips I’m so proud of my daughter Jessie grabbing that can of Vienna’s best mix of meat that Scots savor in a dish of haggis. It brings back memories of summertime lunches of sausages on Saltines, The Meal of Redneck Nobility.

3. I’m allergic to shrimp. And horse hair. And cat hair. And dust mites. And pollen. And hay. And this. And that. And going. And going. I’m like the damn Eveready Bunny of Sinuses. Most of the stuff is treatable through antihistamines and the magic of Benadryl. I ate shrimp all my life only to have a pretty good reaction at the age of 35. Since that allergy usually means an aversion to other shellfish I went to an allergist to check it out. After the battery of tests I was handed this sheet that told me what I needed to avoid. Not one other shellfish was mentioned. BUT making the “cut it out or you might die” list was these favorites: bass, tuna, salmon, catfish & crappie. No more salmon patties. No more tune salad. No more wrestling with the channel cats in the middle of the night down in the Bayou swamps with my brothers.

4. I hate clowns. They’re just freaking weird. They gave me bad dreams when I was a kid. If I wanted see a bunch of freaks wearing too much make-up with big fat honking noses sporting shoes that obviously hide feet the size of Yeti’s I’d just attend my wife’s family reunion.

5. I talk in my sleep. Okay, that’s like saying President Bush tells an occasional harmless fib. I swear in my sleep. I’ve used words and phrases that made the rest of my family blush the next morning and they slept through the whole thing. Last Thursday morning it was snowing. If you recall the kids are out of school for the day. Joan heads to work since the conditions improved late morning. I put Ben on the couch to watch cartoons with his sister and then retreat for another hour of sleep. The phone awakens me. It’s Joan.
“Are you okay?”
“Yeah, why?”
“(snicker) Um, Jessie just called me and she’s afraid of coming upstairs (more snickering)>”
“Because you said. ‘%^*(^%$^you (^&^$(_**)^(^&%%)*&(_)*&*)mother&(&*%*%(.’”

6. Ben attracts black snakes. Yep. It’s true. Since this blog is a daddy/son blog we thought it fair to add something about him in this Meme. This one’s a doozy and I was highly encouraged by the women-folk of the family to include it. The trouble is that it’s a pretty lengthy tale so I will save this entry for tomorrow.

In the mean time I’ll tag Vance, Casey, and Kyla so they can get busy on their own collection of “stuff” hidden in the closet.

Monday, February 05, 2007

A New Painting for Sale

Title: "New Year Palmetto"

Size: 16" x 20" on canvas paper; it is a standard frame size!

Price: SOLD

I just finished this yesterday. Custom framing looks great but this painting will fit in a ready-made-frame.

I accept PayPal (preferred), Visa, Mastercard, or personal checks if you would like to purchase this piece. E-mail me at if you are interested or have any questions. A portion of the proceeds from the sale of this art will be donated to Ben's class fund.

Open Studio Tour

The drawing table.

The easel.

The work.

The critic.

The office.