Strength

Image courtesy of Victor Habbick / FreeDigitalPhotos.net

Today is the anniversaries of both Hurricane Katrina and Hurricane Isaac, two storms that wreaked complete havoc in my state. Isaac less than Katrina, but still enough that lives and properties were lost and many things have still not been regained or re-established. Lots of people are posting remembrances today, but it’s a little more difficult for me to broach the subject. I was there, for work. With my husband, as he also worked for the same agency I did, and with my thin blue line family. Here is the short version I posted to my Facebook friends:

“8 years ago today I was on the front lines of one of the nation’s biggest disasters. Everything went to shit then got better. Trust that it’s something I won’t forget. The end.”

There is no way to describe the situation other than to say everything was terrible. If you’ve never experienced a natural disaster of that magnitude (which many folks around our planet have), then it’s hard to explain the feeling of loss that accompanies witnessing your entire life taken in as many minutes as years you’ve lived. Your town is gone. Your home is gone. Maybe your job is gone. And for the least fortunate people, your family members and friends are gone.

Image courtesy of Danilo Rizzuti / FreeDigitalPhotos.net

I feel fortunate. Not because today I will be experiencing the most severe PTSD ever, but because of what has been gained post-K. I’ve got a new home, new stuff, some of the old stuff that was salvageable( albeit a small amount), but most importantly I’ve gained a sense of what is most meaningful-the people I still have in my life. I was fortunate that I didn’t lose any family, even my cat and dog survived. The snake was lost, but I’m sure she slithered away in the water and is enjoying life in the woods somewhere living the life a corn snake deserves. I had a roof over my head, even though for some time that roof was that of the Cajun Queen, a paddle boat meant for short tours up and down the Mississippi River (Nothing like taking a shower with a hose on the deck of a boat in mid-October to wake you up!), and later a decommissioned ferry-boat where my husband and I shared bunk beds in an 8X8 cabin.

Trailer we lived in post-K from 2005-2007. We moved on up from the boat accommodations.

Me at the trailer in which we worked for many, many months post-K

My thoughts and prayers and moments of silence go most to the less fortunate who did lose family members-some lost many in a moment, the people who couldn’t bear the burden that comes following such a travesty and took their own lives, those who weren’t able to recover and pined away for what was, and those who lived horrors worse than I and that I cannot even fathom. This empathy is not reserved for victims of Katrina or Isaac or any one particular thing. So many terrible events occur around the planet, and I agree with John Donne who wrote the words “No man is an island.”

I forget what’s going on here, but it’s something.

I’ve long tried to accept the proverbial phrase “less is more”, and nothing has taught me to do that like Hurricane Katrina. What is stuff but meaningless collections of mass that can be lost in a matter of seconds? Katrina taught me what is most important to survival-physically, psychologically, and spiritually. My old home is gone, but I have a new home now. Man, am I thankful for that! I have food on my plate everyday. I have lots of great friends and family who are always there to help me, especially during the difficult times we more recently experienced after RB was diagnosed at 2 years old with brain cancer. Here is another short summary I shared on Facebook of what I was doing last year during Hurricane Isaac:

“A year ago today I was in Children’s Hospital, where we’d been for 8 months by then, during Isaac, in the dark going between trying to get weather updates on my phone and comforting RB who was still going through chemotherapy treatments at the time. Now we’re home, again things got better eventually. The end.”

Things have gotten better. RB is making progress everyday, and his scans have been stable for nearly a year. His next MRI is in September. There are no signs yet of the expected regression caused by the radiation and chemotherapy. He will soon get a homebound teacher and therapists who will come to our home and take over what I’ve been working on since February. He’s getting a stander and braces to help straighten his legs. We’re traveling down a very long path here, but there is an exit, and at this time, it is bathed in light.

RB in the physical therapy gym at CHNOLA. He will he receive a stander similar to this one.

So while today will be a day of reflection and bad memories, I would rather look forward than back. I would like to focus not on what was lost, but what has been gained, on what we’ve overcome and on our strength.

Hurricane Katrina Memorial
Yscloskey St Bernard, La.
Photo by Edward via NOLA.com (http://photos.nola.com/photogallery/2010/08/st_bernard_parish_katrina_memo.html)

Chemotherapy and Stubborn Little Boys (And Moms and Dads)

I never thought I’d say the words, “Thankfully my son started chemo today.” Because no one should be happy that her child is receiving chemotherapy. Because in that case obviously something is very wrong. Something has gone awry, and bad. But I say that I am thankful because for the last month and a half we’ve been waiting to know if chemotherapy was even an option.

See there was a time when the doctors thought Doodles wouldn’t even make it this far. He was “neurologically devastated” and they weren’t sure if he was “salvageable”-because he’s a car or sunken shipwreck. We were told he “wasn’t going to get better” and that they were just planning to sustain him and “keep him stable.” We were even told they might have to “just let nature take its course”, to which we replied, “That is not an option.”

Because we knew what they didn’t know, and although they were reluctant to believe us, we refused to let Doodles go down without a fight. We saw what the doctors didn’t see. We saw that he was “salvageable”, and that he was conscious, responsive, and aware. We knew he was there.

Me and Doodles, in grayscale

I’m sure we were regarded as over-optimistic parents refusing to accept reality. I’m sure there are sadly many parents who might have taken the doctors’ words as testament and went along with whatever their plans were. But we’re stubborn and very hard-headed. And so is Doodles.

We had a long discussion, he and I.  I told him it was very important that he start showing the doctors that he was a strong man and that he was getting better. I told him it was the most important thing in the world. Whether he understood me or not, I don’t know, but he did what I asked. When the neurologist came to asses him she spent less than five minutes before she decided he was, in fact, not “neurologically devastated”, and that he was very much aware and alert.

Doodles finally got his tracheostomy and his g-tube (something that was delayed because the oncologists who originally looked over his case decided there wasn’t much they could do), and although he is still on the ventilator, he is breathing over the machine at almost twenty breaths a minute. They are now weaning him off the ventilator, something we were told just weeks ago wouldn’t happen.

The hem/onc team wasn’t sure if they could or would start chemotherapy simply for the mere fact that they assumed Doodles wouldn’t recover and that it wasn’t feasible. To them it seemed more feasible to let him expire, I suppose. But it wasn’t feasible to us, and certainly not to Doodles.

So today I say that I am thankful that my son started his chemotherapy because it sure beats the hell out of the alternative.

I want to add that not all of Doodles’s doctors were so fatalistic about his condition, and I’m very grateful to those who voiced their opinions and were his advocates in opposition of those doctors who were ready to close the book on him. I also want to acknowledge the many great nurses, physical therapists, respiratory techs, and other staff here who have taken to Doodles so much so that they check in on him and ask about his progress even when he’s not their patient for the day.