RB had a fever yesterday and we had to return to the ER at CHNOLA. Everything seems fine, but he’s being treated with antibiotics for safety reasons since some bacteria came back in his tracheostomy. It’s a bacteria he’s been colonized with and will always be there. His oncology team advised us that next time he has a fever, we won’t have to come to the ER. He can be treated for an illness by his regular pediatrician as he is no longer a cancer patient. After his next scan (which is this month) they are going to schedule a surgery to remove his port. All of his counts are normal and he is completely recovered from the chemo and radiation.
Although he has a lot of physical disabilities still (many of which he is overcoming slowly, and with therapy;some from which he will never recover). Things are by no…
I get about one day a week off from my nearly 24/7 duties at Children’s Hospital. (If you’re just joining us, you can read about all that here.) This day is Friday, when my mom comes to stay with Robot Boy so I can go home, have a real dinner with my husband, decompress, and sleep. My mom works most Fridays, and she is wonderful enough to come after work and sleep at the hospital. Well, I shouldn’t really say “sleep at the hospital” because anyone whose ever been in a hospital or stayed with a loved one in a hospital knows you don’t sleep. Not more than an hour or so at a time, anyway.
It’s suffice to say these evenings I get away from the hospital are sacrosanct. I do my best to get home in enough time to go out to dinner with my husband and at least spend some time with him before he has to go to bed, as he works Saturdays usually. My home is approximately an hour and a half from the hospital, depending on traffic. The drive is hardly bothersome under normal conditions. For the last five years, I’ve had an hour commute to and from work-sometimes before and after working 12+ hours. I don’t mind driving, as long as the traffic is moving and there aren’t very many fucking assholes inconsiderate drivers on the road. I turn up the radio and exercise my vocal chords.
I sound nothing like Gonzo while singing this medley.
As I’ve said, under normal circumstances, I don’t mind the drive. However today, today my decisions led to me into very unusual driving conditions for my Friday night of freedom. My mom didn’t work this Friday, and she was at the hospital earlier than usual. Instead of leaving the hospital shortly after she arrived, I chose to stay and visit a while. I also have a terrible time tearing myself away from RB. Especially on nights like tonight, when he was watching me pack my bag, knowing that I was leaving. Not that he doesn’t love his grandma. He is very excited when she visits, but Mom is the safety net. Mom is there to make sure nothing goes awry. And also Mom knows-or thinks she knows-exactly what he wants most of the time.
I don’t regret my decision to stay, but I was less than pleased to be stuck in the horrendous traffic which accumulated at the precise moment I left the hospital’s parking lot. I made the unwise decision to leave at exactly 5p.m. on a Friday night. Oh and also on the night of a Hornets game. I sat on the same street for no less than 30 minutes. Someone in a black Yukon that’s license number I did not memorize for use in future voodoo ceremonies nearly caused an accident by purposely skirting around me while I was clearing changing lanes to avoid an 18-wheeler. I hardly berated the driver before he/she sped away.
I finally made it to the interstate, only to discover the traffic was almost as bad. With my bladder’s fluid gauge on full, I approached the High Rise, which any native knows is another traffic nightmare. At any rate, I finally got through the city and crossed Lake Pontchartrain en route to my home.
I exited as soon as possible and hit a gas station to fill up and utilize their surprisingly clean restrooms. I bought an enormous coffee (and a six-pack) and returned to the road. Instead of heading back to the interstate, I remained on the highway, which proved to be an unfortunate decision since everyone else in the state also decided to do the same thing on the same road. I was stuck in more traffic. But, with an empty bladder, a serious caffeine high, and good music, my two and a half hours in snarling traffic already seemed much less unpleasant, and at the exact moment I was contemplating driving through servitudes and on private property, the Muses graced me with a rather fitting song on the radio. . .
This song describes my entire life right now.”Pressure pushing down on me/Pressing down on you/No man asked for/Under pressure /That burns a building down/Splits a family in two/Puts people on streets.”
I, of course, recognized the fortuity. As I began to sing (both David Bowie and Freddie Mercury’s parts in perfect pitch, I might add), my foul mood was interrupted by tolerance and stoicism. What importance really, in the grande scheme of things (if there is one) holds traffic? I felt most uplifted: “Pray tomorrow gets me higher, high, high!”
Perhaps it was the music, or my utter madness, or the realization that there is no use being upset when you can grin and enjoy a major caffeine rush, or perhaps it was all these things, but I was wearing a smile and feeling so much better. “Cause love’s such an old-fashioned word/And love dares you to care for/The people on the edge of the Night/And love dares you to change our way of/Caring about ourselves.”
When the song ended, I felt like I needed a decent follow-up. You can’t just come down off a high like that. With my iPod on shuffle, I skipped the next two songs until I found a great song to accompany the first.
This is the cutest video ever.
“That time will come/One day you’ll see/When we can all be friends.”
Under Pressure was written and performed by Queen & David Bowie and appeared on Queen’s 1982 album Hot Space.
The Miracle was written and performed by Queen and appeared on their 1989 album of the same name. The four boys from the video are Paul Howard as Brian May, James Currie as John Deacon, Adam Gladdish as Roger Taylor, and Ross McCall as Freddie Mercury.
Bohemian Rhapsody was written by Freddie Mercury and performed by Queen. It appeared on their 1975 album A Night at the Opera (titled after the Marx Brothers’ movie of the same name).
The Muppets were created by Jim Henson and currently belong to The Walt Disney Company.
I would first like to clarify that I do not now nor have I ever supported any type of censorship. As a writer I feel it is against my character. I don’t believe in banning books. I don’t believe in censoring music. I am a parent, and I do believe it is my, and only my, responsibility to control what my child does and does not see, hear, and read. And I feel it is my responsibility to explain to him and teach him about those things he may encounter that I wish he wouldn’t. I cannot shield him from life.
I support SOPA Strike and other efforts to stop the passage of the act and the prevention of the passage of PIPA. I do feel if made law these two acts would give the government too much control over what we see, read, and hear as a society. I fully support the First Amendment and I support anyone’s right to exercise that right, even if I do not agree with the individual’s opinions. As Americans I feel it is our right to set an example for nations that may look to us for leadership, and I feel as a free nation there should not be censorship of what information our citizens obtain. These are the type of practices instituted by dictatorships which our nation opposes.
Just because I don’t support SOPA and PIPA does not mean I agree with/participate in/support piracy and copyright infringement. I do not support these things. I don’t want anyone stealing my intellectual property any more than any other artist would. I am very protective of what is mine, and I imagine others are as well. I do agree that piracy should be controlled. I don’t think it can be completely eradicated, but minimized as much as possible.
I’ve been reading that many opponents of SOPA and PIPA are proponents for OPEN (Online Protection & ENforcement of Digital Trade) Act. More can be learned at the website http://keepthewebopen.com/.
I understand many people support the protests against SOPA and PIPA and many oppose it and many more don’t care at all. But we should care. I’ve been reflecting on the virtues and philosophies of our nations forefathers. And I think many if not most of them would also oppose SOPA if this type of incident were to take place during their lives. I can’t imagine Benjamin Franklin was much for censorship and government control of information outlets.
I understand SOPA is to go in front of Congress on January 24th, and I hope they rule in favor of freedom and democracy.
Any one interested in learning more can do so, well, almost anywhere but here are a few helpful links