This site focuses on support for Ependymoma Families and includes the full archive of Colin's adventures and our family's life
Awesomeness is Free of Charge
St. Jude has Kung Fu Panda in its DVD library, which I have never seen in its entirety. However, I did at least catch the beginning one day during chemo while snuggling with Colin and immersing myself in the Jack Black-ness of the intro, a dream sequence in which the headline panda exhibits true kung fu excellence.
After defeating (literally) torrents of foes, the grateful village people acclaim his awesomeness and ask how much they should pay for his services.
“Awesomeness is free of charge.” — Kung Fu Panda
Most of our updates are, understandably so, focused on Colin’s condition and the drama of his medical woes and triumphs, with only parenthetical mention of his awesome brother, Aidan.
(On Colin:
The long and the short of Colin’s condition currently is that he is experiencing iatrogenic effects of treatment, which means that Dr. DeWire comes in and looks at him sadly and says, “We did this to him.” Although, like Kung Fu Panda, he started these last few days of chemo like a champ, cyclophosphamide jarred him awake from that dream and, in combination with the cisplatin and vincristine, has laid him out like a rotund, out of shape panda with ambitions of martial arts mightiness.
Chemoed Out: “Don’t mess with me, people. It was a rough night!”
When he feels well, he’s happy and playful, and we look forward to the intermissions from crappiness. On Friday night, he played with one of the volunteers, Randa, until he was contentedly spent. However, when he feels poorly, he curls up to protect his face and trach (suctioning makes him gag).
)
So, back to Awesome Aidan (this was also his moniker at Circus Camp). With Colin’s medical situation more or less in control, or at least better understood, we have been able to focus more on addressing Aidan’s plight in our adventures through cancer. Half the battle is identifying the problem, but it is impossible, short-term, to address his requests (specifically, going home).
Our circumstances here present the opportunity for Aidan to pursue artistic interests. In addition to projects with Joanna from child life, he enjoys craft activities. On Friday, there is a volunteer who brings in her own projects for the children.
This past week, it was wooden frames and paint. Joanna completed the picture, so to speak, by bringing out a camera and taking pictures for the newly decorated frames. Aidan’s project began with him wanting to trace a clone trooper head on the frame, but he ended up painting the entire frame blue, then deciding to photograph the trooper inside the frame (not quite finished).
Joanna also took a picture of wiggly Aidan (thus, not entirely in the picture) and Mom. Given the choice of which photo to put inside the now-finished frame, he elected to go with the clone trooper.
Aidan's creation, 11/13/2009
Joanna appreciates Aidan’s artistic choices, and he never lets us forget how important it is for him to work unfettered by our ideas of what he should do (“Here, paint a frame and we’ll take a picture of you goofing around in order to manufacture some positive memories of your ersatz incarceration in the hospital”).
Instead, Aidan needs to be allowed to have his own vision, and if anything will in fact make his experience here more positive, it is exactly that. With so few choices in his world, his creative works are entirely his and he has become accustomed to owning that space. I would say that we are happy to hand over the deed, but it was never ours in the first place.
Aidan has so far engaged in two painting projects with Joanna. The first is an image borrowed from the Mario Brothers games, a red-and-white mushroom. He explained that the giant mushrooms make you giant, and the tiny ones make you tiny. This is itself a concept borrowed from Alice in Wonderland, but never mind.
Philosophically, the mushroom is simplistic in a developmentally appropriate way. Aidan likes video games, etc. etc.
However, I particularly enjoy the syringe painting, a later endeavor that is not typical of most syringe paintings. Joanna set up an ample drop cloth and encouraged him to go to town, splattering and making an enormous adult-sanctioned mess. However, he demurred, preferring instead to meticulously apply paint and blend colors according to his own design.
The result is an intriguing blend of color and texture. Aidan’s original aim is unclear, though possibly (probably) a robot or ship of some kind.
For adults, this piece evokes many different images. The Friday volunteer suggested the Cathedral at Chartres. Joanna had a different idea, which I can’t remember at the moment.
For whatever reason, it is interesting to look at. The effect of the paint is certainly unintentional, as Aidan has never done a syringe painting before. The darkness of the colors is characteristic of children’s painting, which often gets muddy and dark through the overapplication of disparate paint colors. This seems particularly true among boys, who seem more likely to smush or overpaint in an effort to instill a new color.
Even so, Aidan’s precision in his work yields certain intentional results. There is no paint at all in blank of the canvas, and he effectively clarifies the edges from the middle.
Often, Aidan gets frustrated when he has difficulty manifesting an internal vision. Uneven lines, stray marks, mismatched edges can make him gruff and inclined to scrap a project. Perhaps he is learning to enjoy experimentation with new materials and methods, or perhaps this was close enough to what he imagined to satisfy him.
At home, he is embarking on a film project using our old camera. The subject involves a troop of Star Wars Lego minifigures and a small acrylic box of Mexican Jumping Beans I picked up at the airport in Washington (FYI, the perfect gift for any five-year-old). He plans to use the Lego Star Wars game on his Nintendo DS to generate the soundtrack.
St. Jude does provide a good opportunity for Aidan to explore his interest in visual arts. It also serves the function of allowing him a form of expression and control. Although St. Jude does not typically display the artwork of siblings or have an area dedicated to that cause, Joanna said she can claim some wall space in the E clinic (brain tumor) for Aidan’s work. Whether public display is important to him or not is unclear, but it will be satisfying nonetheless, at least for his proud parents.
We look forward to posting Aidan’s video when it becomes available or other projects that he is working on. He is living proof that, just as Kung Fu Panda said, awesomeness is free of charge.
3 thoughts on “Awesomeness is Free of Charge”
Love the pictures Aidan!! And stay strong little man. Thinking about you all every day and everyone at Hudson is too.
Tracy, Karl, Mason & Ava
Yes, Kung Fu Panda does have a very affirming and positive message, at least the parts that I tuned in on.
Glad you like the pictures. I figured this is better than waiting for the gallery (seriously, I don’t think it’s my fault). Colin’s scars are all much better and perhaps I will post those as well.
The movement on the right is definitely there and improving. Hearing on the right is definitely gone and hearing on the left is unaffected by the cisplatin (at least so far). We’ll see about the effects of the second half of chemo and then radiation.
Love to the gang in Colorado!
I like Aidan’s syringe painting. I think it looks like an elephant with long ears! Aidan, keep up the art. It’s a great way to let loose. I’ll have to to look up this ‘Kung Fu Panda’; I like his philosophy.
I’m glad you now have some pictures on this site. You and Aidan look great. Colin’s scar looks like it’s healing. Are yoiu still detecting a few twinges on the right (? ) side of his face? How is his hearing?
Love the pictures Aidan!! And stay strong little man. Thinking about you all every day and everyone at Hudson is too.
Tracy, Karl, Mason & Ava
Yes, Kung Fu Panda does have a very affirming and positive message, at least the parts that I tuned in on.
Glad you like the pictures. I figured this is better than waiting for the gallery (seriously, I don’t think it’s my fault). Colin’s scars are all much better and perhaps I will post those as well.
The movement on the right is definitely there and improving. Hearing on the right is definitely gone and hearing on the left is unaffected by the cisplatin (at least so far). We’ll see about the effects of the second half of chemo and then radiation.
Love to the gang in Colorado!
I like Aidan’s syringe painting. I think it looks like an elephant with long ears! Aidan, keep up the art. It’s a great way to let loose. I’ll have to to look up this ‘Kung Fu Panda’; I like his philosophy.
I’m glad you now have some pictures on this site. You and Aidan look great. Colin’s scar looks like it’s healing. Are yoiu still detecting a few twinges on the right (? ) side of his face? How is his hearing?
Love to all, Diana