Tuesday, June 18, 2013

The Doctor Will Be With You Shortly

60 x 48 oil and collage on canvas.

The weight of waiting....

At some point you've been at the doctor's office waiting with your child for the physician. First we all wait in the waiting room amongst other parents and patients. We might make small talk with someone if they smile at us first. Other people in the room will do everything possible to not make eye contact. I think IPhones were created just for this purpose. IPhones and any Smart Phone lets people delude themselves into pretending they are busy. Plus even if they are not doing anything with their phones they can make the rest of us believe that they are and then they do not have to make any eye contact. I understand why people do not want to make eye contact or small talk. They don't want to be there. I don't either.

Updated April 22 -Thought I should take a pic of the
mighty sturdy frame and what it looks like stretched.
I do not have a fancy phone. I do have a sketch book. So, I just bury myself in that. I wear a baseball cap. Baseball caps are great because people cannot see what I am looking at. If they think I am drawing them, I typically make sure they see me looking at the tv screen and then they are convinced I am not sketching them. Once I'm convinced that they are again uninterested in what I am doing, I go back to sketching them.

After at least an hour of waiting in the bland and sterile waiting room, a nurse will come out with a clipboard and tell us to go to a room. Here's where the fun starts. That nurse will come in as well and ask some standard questions. Typically she has already filled the fields before I have even answered. Sometimes for fun, I like to pause and pretend like I am really thinking about the question and then I say "Funny, no one has ever asked if my son is allergic to latex...no...no, I'm quite certain he is not".

"The Doctor Will Be With You Shortly"
72" x 48" oil on canvas - lay in stage.
Typically, I just wait. And my son waits. And my other son waits too even though it is not his appointment. After another good half an hour or so the physician comes into the room and pulls out the rolling chair. Physicians enjoy sitting on rolling circular chairs. They like to wheel around the room. I like those chairs too and so do my kids. I, however, do not look nearly as cool rolling around on them as the doctor does, perhaps if I got a lab coat and clip board I could pull it off. While waiting, I let my children sit and spin on them. When I see the doorknob turning I tell my boys to knock it off so I can have the appearance of a good parent who has well behaved children who sit patiently with their hands folded.

The physician will do an exam and utter terms and numbers to his assistant. The assistants are then given instructions about what to do next for my son's exam. The physician leaves. The assistant leaves.

We wait.

The assistant comes back in and administers drops, an IV or whatever is necessary. They typically ask if we want to watch tv. We search for cartoons. My boys are tired of waiting. They fidget. They start staring at all the drawers and tools that they are not allowed to touch or play with.

We wait.

2/7/13 Spent the past 5 days going through medical files.
Transferred them to the canvas as the wallpaper and flooring.
Later the physician comes in. I can usually tell when they've looked at the report prior and when they have not. I try not to call them out when they haven't, so I will say "I'm fine waiting if you'd like some time to read the radiologist report that I had sent over to you earlier in the week". I'm not saying it to be a jerk, I am saying it because I would prefer they really read it rather than try to rush through the exam to get to the other fidgety family waiting in the room next to me.

More tests.

The physician and assistant leave.

We wait.

The physician comes in and tells us some good news. He or she will always tell you good news no matter what. They must learn that in a class in medical school. Always find something positive to say first. Then he or she minimizes what might be bad news. They will use terms like "let's keep monitoring"...and "possibly another surgery".

They say this to at least plant the seed so then at the next appointment it won't seem like dropping a bomb onto the patient. It is how I would do it too. I don't fault them at all. My son has wonderful doctors who are looking after him. I trust that he is in good hands. Of course, I trust that because it is also what I want to believe. No one wants to think "Did this gal get last place in medical school because she seems like a real doo dah".

And what, again, do we do?

What we do best. We wait. We watch. We monitor and we schedule another exam. Then the cycle starts again.

And we just simply


Tuesday, June 4, 2013

Case Study #5 - Jeff Painting a Canvas

"Jeff Painting a Canvas" 30 x 24 oil on canvas
There are so many people affected with NF, but I have a special place in my heart for a couple of moms that live near by. Not that they are working harder or better moms or anything like that, but for some reason, it was nice to know that there were other moms dealing with raising a child with NF living reasonably close to me.

One such family are the Hansons of Overland Park, KS. Jeff Hanson was born with NF. Jeff's NF was due to a spontaneous gene mutation, so Julie and her husband, Hal, decided to just invest all of their energies and love into Jeff and just accept the diagnosis and embrace whatever Jeff's interests led to.

I am now going to briefly share Jeff's story (which a more comprehensive bio can be found on his website)

Lay in stage - 30 x 24 oil on canvas
Because of the NF, Jeff is visually impaired from an optic nerve tumor (he nick-named "Clod". The tumor started causing severe vision loss in 2005, and Jeff received radiation and chemotherapy in 2005-2006. Despite his low vision, Jeff sees well enough to continue creating original artwork for several charities, as well as commissioned pieces.

Jeff never had a "pity party" about his medical condition. He kept a great attitude throughout his treatment, despite losing his hair and all the usual "chemo" side effects. Jeff said good-bye to his home school friends, and spent three years at the Kansas State School for the Blind. He took all of this in stride, and used humor, creativity, and a headlong immersion into his artwork to defeat "Clod." On his last day of radiation, Jeff showed up for treatment in a TUXEDO! "Clod" was not going to win--or be taken seriously. Following that treatment, a helium balloon launch in our front yard signaled "farewell to Clod" and a new page of life.

Jeff started painting watercolor note cards in the Spring of 2006, when he was 12 years old. It was a hobby and pastime for him, since his visual impairment prevented him from doing sports and the usual kid stuff. Jeff's art was totally abstract, with bright bold colors. His vision did not permit him to create any concrete images. But his color combinations were explosive! Jeff sold the note cards at "Jeff's Bistro," a glorified lemonade stand he set up in his driveway in the Summer of 2006. Jeff painted and sold over 5000 note cards that summer, along with mom's baked goods, raising over $15,000 for The Children's Tumor Foundation, to help fund research for Neurofibromatosis and optic tumors.

Since that time, Jeff has moved into larger works using acrylics on canvas, with proceeds benefitting charities that have "touched his life." Jeff also donates paintings to several of his favorite charity auctions--raising as much as $15,000 each! Throughout his career, Jeff has painted over 800 original works. He is close to raising almost one million dollars and he is only nineteen years old. Now, that is inspiring.

Jeff Hanson - Watercolor, 24 x 18. 2012.
I have already painted Jeff, like I have the others for my Many Faces of NF project. So, in keeping with my idea of painting the person and having NF play a secondary role, I asked Julie to take pictures of Jeff while he worked. I went to visit the Hansons and was visually stunned by the studio. Julie has everything all organized and categorized. Ohhh...how I wish someone would come organize my studio, mine looks more like a tornado came through. But, I digress.

Jeff's mom Julie is amazing. She completely focuses herself on the career of her son's art and is tireless in promoting him, getting supplies, going to charity events, promotion and marketing. I think Jeff is very lucky to have such a mom. Although, since I am also a mom, Julie is very lucky to have such a tender and loving son as well.

I like to talk with her because Jeff is exactly ten years older than my son. So, she and her husband have already walked this path and they are a source of comfort, hope and inspiration. I admire the entire family and my only reservation is that I hope my painting will do Jeff justice.