A Visit to Ben's Studio

For the first time in 2010 Ben got to start some new canvases. He was so excited and fired up that both Nurse Tracy (his primary nurse) and Nurse Julie (his occasional evening nurse) got to work with him yesterday. He was so very full of energy which is not an unusual trait of Ben these days.

After I uploaded and began preparation of these post I was a bit torn. In one way I was rather disappointed in that none of them capture that energy I mentioned. However in another way I pleased to see once again how intense Ben is when he paints. This was Tracy's second "painting with Ben" experience and Julie's first - both absolutely marveled at the young artist's ability to convey what he wants, from the choice of paint color to the moment he says "I'm done."

I myself was blown away by his desire to all of the sudden mix colors on the canvas - something I rarely do. At first I thought it a fluke until he did it once more in his evening session. He is also (obvious to those around him) making a very distinct choice of colors much more dark and moody than I would choose. Is he developing his own style? I cannot answer this and none of us may never know. My gut feeling is that cognitively does understand what he is doing and therefore by creating art Ben is liberating himself from the constraints of his physical body.

Ben chooses his color. We usually give him only three distinct choices but last night (we didn't take pictures unfortunately) we rotated several sets of colors using a process of elimination. It worked wonderfully!

Earlier in the day I had mentioned that I didn't have a bottle of one of my favorite paint colors: lime green. Ben deliberately chose yellow (a first for him) and immediately blended it with the green he initially selected. The result? Lime green. Coincidence? By the way I have witnesses for all of these things!

Ben was none too pleased about this shade of purple. We are now positive that he wanted a real dark purple color that he is used to rather than this lilac. We eventually told him he could wipe off the paint if he wanted which led to...

...Ben wiping off the paint.

Windows

Nope. I won't be discussing that software that made Bill Gates so wealthy. Although I use it every day there are plenty of techie blogs out there to tell you about the ins, outs, and "what nots" of whatever version of the desktop software you might be using.

Instead I want to talk about "windows of the soul" which happens to be the title of a book written by Ken Gire that I am currently reading. My mother actually loaned this to me about two years ago after reading it for herself. She naturally thought of me given that throughout the book the author uses artwork, stories of artists, and the creative process in general to illustrate how God attempts to communicate with us and how we attempt to reach out for God.

In Mr. Gire's words, "We reach for God in many ways. Through our sculptures and our Scriptures. Through our pictures and our prayers. Through our writing and our worship. And through them He reaches for us....But we must learn to look with more than just our eyes and listen with more than just our ears. We must be aware, at all times and in all places, because windows are everywhere, and at any time we may find one. Or one may find us."

Now before you become turned off lest you think I'm about to thump the Good Book over your head for awhile I ask that you please keep reading. I truly believe there is a message here regardless of your spiritual beliefs or lack of them. Even though my mom was anxious for me to read Windows of the Soul two years ago I honestly wasn't prepared to read it until recently when I made a significant attitude adjustment. In fact my mother has probably completely forgotten that she loaned me this text.

For a small part of the book Mr. Gire writes about his own journey toward becoming a writer; something he thoroughly enjoyed doing but never dreaming he'd make a career of it. I can totally relate to his experience. Ten years ago I thought my own career path was set in doing something that paid the bills but left my heart and soul empty. So many years before I should have been looking for one of those windows.

Even though I'm still roughly halfway through reading Windows I've already drawn some conclusions. First and foremost it is never too late to change career paths or even to make huge life-changing choices. Usually these are huge "picture windows" with opportunity along with opposition obscuring the the grand view. Trust me I have made one of these within the past decade.

Probably more important though are those smaller windows - ones that offer just a glimpse of the backyard of your life or the view of familiar things not far down the road you usually travel. Those windows are not as inviting but can be just as life-changing as the one that offers the scenery of a mountain valley or a sea shore. Within the last 6 weeks I have paid closer attention to them and I can truly say many windows around me have been opening and closing: some of them good...some of them not so good.

From the very beginning of Ben's experiences with the rest of the world one thing has remained clear: our son wants to not only exit our home at times but to leap or even crash through those windows that surround him. The hummingbirds and finches that feed outside his therapy room...the cars and trucks that pass our living room window panes...the waves crashing to the shore that he has seen from my mother's beach home back porch. Each of them has been an invitation to to experience life in a way Ben is not accustomed to but is ready, willing, but not able to. There are times I am thankful for the seat belt on his wheelchair. There are other times that I am not.

This Should Be Criminal

Here is a story about how the economy and state budget cuts are beginning to affect families like us. Karson Brewster was born with a rare genetic disorder, something she didn't ask for nor earn because she had bad parents. It is a situation that many families within the disability community have to live with. We were just hit by lightening.

Many...no...most of us survive on state supported funding to help us care for our children. Honest to God we wish we didn't have to but it is the reality of living this life we didn't choose. Like the Brewsters one of the spouses usually ends up quitting their job to help care for the child. That becomes financial smack down number one in that a two income family must now rely on one. Financial smack down number two is the Great Recession caused by our previous administration's ineptitude at overseeing an out-of-control banking system and the decision to use valuable taxpayer dollars to invade another country against the overwhelming opinion of the American people not to do so. Now our elected "leaders" are going to punish the most vulnerable of our citizens?

Certainly hard decisions have to be made in managing state budgets with great shortfalls but cutting from disability administrations should be the last place to look. How about from transportation, tourism, natural resources, or tax agencies? Shame on you Gov. Martin O'Malley. Shame on any elected official or anyone else for that matter who steals from a special needs family.

Painting

Please accept my apology for being complacent about our blog over the past three weeks. Honestly I've had plenty to blog about but also in honesty I just didn't feel like it. Off the bat you may think that is a bad thing - you'd be wrong.

The off-season for selling artwork has arrived. This has annually been a very trying time financially for our family in recent years since each of those years I've sought unsuccessfully to secure some type of temporary employment to prevent the need to constantly borrow money from family members just to make ends meet during the cold months.

Most employers aren't very interested in hiring someone who has several hours available each day scattered between nursing hours, doctor appointments, therapies, and the inevitable "sorry I can't come in - the nurse is sick so I have to keep Ben." Via a Facebook acquaintance whose become a friend I've found work that perfectly fits with all of those scheduling conflicts! Officially I am now a house painter helping a friend with a fast track renovation of her house which happens to be very old...as in I am certain I found hieroglyphics behind some old masonry recently removed.

For the most part I am truly enjoying the work. I have discovered that I despise a cramped office environment, and though technically I have a boss to answer to, I get to work on my own. Most importantly I get to work with my hands. I guess I've found my collar is more a shade of blue than white.

Last week after a conversation with one of the other contractors on the job I began thinking about the correlation between the renovation project and the work involved in raising our exceptional son. The comparison at times has been quite startling. Most construction jobs revolve around a blueprint or a master set of drawings providing each trade very specific and detailed information about how to complete their work. In the case of this project I'm now involved with our plan of action is based upon what we might find behind the next wall we tear out.

In the case of a typical child there is plenty of information available to serve as a blueprint for his or her growth. I recall reading those "What to Expect When You Are Expecting" books during the first few years of our daughter's life. With an exceptional child there are no master drawings, no detailed specifics of how to get from point A to point B. Instead there is an ever-changing environment with few clear answers and difficult choices that involve creative thought, an adaptable mindset, and willingness to endure physically (and emotionally) challenging hardships.

This was made very clear to me this morning as I surveyed the work I've completed over the first few weeks. When I started I honestly didn't know if I had it in me to actually do a good job of painting. Yeah I am an acrylic painter by trade but this house painting stuff is a completely different animal! Also I found it difficult to know where to begin. We're talking a repaint on an entire house inside and out with other skilled workers needing to complete their work as well. To say it seemed like a confusing mess would be like saying Tiger Woods has a slight image problem at the moment.

Essentially I just followed my intuition (and a few hints from the homeowner about what she wanted completed first) and just started. The first few days it didn't feel like I was accomplishing a whole lot - doing a good paint job involves a great deal of preparation before applying that first coat of paint. I also got to know my coworkers who have been most helpful in communicating and organizing our goals so that we all work efficiently.

So as I finished cleaing up today I felt a sense of pride and confidence that I didn't have two and a half weeks ago. That feeling was not unlike the one Joan and I felt back in October when we celebrated Ben's tenth birthday. It was amazing to appreciate the "work" we have done ourselves toiling a decade without a blueprint. "The Work of Art" that continues to evolve into something we never could imagine keeps us on guard. He also keeps us focused on being Hopeful Parents.