Behind the Veil

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

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

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

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

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

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

Because some of you asked...

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

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

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

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

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

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

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

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

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

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

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

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

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

The Idea Part 2: A Community Challenge

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Idea Part 1: Laying It on the Line

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

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

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

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

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

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

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

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

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

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

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

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

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

Gone Fishin'

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


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


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

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

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

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

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

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

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

Joan Speaks About T-Shirts & Blogging

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

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

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

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

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

What I Did on Vacation (by Ben)

On deck and ready for a fabulous week!

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

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

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

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

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

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

I think I have the prettiest sister in the world!

Our favorite grill by the sea.

Grill, Daddy, Grill!

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

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

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

Hey Jessie, I had wonderful time. Did you?

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

So I can dream about returning to the sea!