Godspeed on your trek
across the boggy quagmire.
May the weight of your mortal coil
You’ve been emancipated.
Exit the lightlessness.
Match your tormentors.
No longer be a victim to anguish.
Clutch the dim radiance
filtering through the fog.
Struggle toward its source.
Pass the souls that are adrift
and that do not know they are irrecoverable.
Ignore the tortured souls’ calls.
You are not one of them.
May warmth surround you.
Do not concede to the cold.
Witness kaleidoscopic ambience.
Are you there?
In 1998, Robin Williams was in the film What Dreams May Come based on Richard Matheson’s novel of the same name (released in 1978). Coincidentally, the novel is about a man who goes on a quest after his death to rescue his wife from eternal torment following her suicide. As most everyone is aware, Robin Williams was found dead August 11, 2014 of apparent suicide. He battled addiction and depression. Richard Matheson died June 23, 2013 of natural causes. Maybe they will meet in Summerland.
A year ago, my then 29 month old son was diagnosed with a PNET (Primal Neuroectodermal Tumor) in his brain stem, and it extended down, tentacle-like, into his spinal cord. He was given a 40% chance of survival. Very little of the tumor was removed, as it was so embedded within crucial parts of his brain and spine.
It was about this time I found some fellow bloggers who’d participated in a St. Baldrick‘s event to raise awareness and donations toward pediatric brain cancer-and in honor of a lovely sprite of a girl taken too soon by brain cancer, Donna.
Through their writing, I learned of Mary Tyler Mom’s blog, and Donna’s Cancer Story. I didn’t read Donna’s Cancer Story for many months. It was always there, waiting patiently for me to be ready. I was afraid of it, because I knew how it ended, and because it was my story, my son’s story.
I began following Mary Tyler Mom’s blog and Facebook, and I learned of Donna’s Good Things. I found strength through Mary Tyler Mom’s ability to continue on after experiencing such tragedy.
Today is Donna’s Day. It is a day meant for us in the pediatric cancer community to raise our voices and awareness for a much under-researched disease that is the number one killer of children over the age of one.
According to Pediatric Genome Project :
“Cancer is still the leading cause of death from disease among U.S. children over one year of age. Cancer kills more children than cystic fibrosis, muscular dystrophy, AIDS, asthma and juvenile diabetes combined.”
Few cancer research organizations dedicate enough of their donations to pediactric cancer research. St. Baldrick’s is the only organization that donates all of their funds to ped cancer research. Besides using more of their funds for solicitation than for research, The American Cancer Society only allocates 1/2 cent of every dollar they do dedicate to research on ped cancer.
There are St. Baldrick’s events nationwide, and several coming up in my city, New Orleans. Check out the link here.
Show up or stay home, shave or don’t shave, but you can always help by clicking the donate button. Anything helps. Don’t feel like because you may not be able to donate a lot you shouldn’t. A little adds up to a lot.
My son, Robot Boy, is recovering. We are in a place Mary Tyler Mom has titled Scarred Acres:
“Scarred Acres, full of children finished with their treatment, but marked in a hundred different ways by their cancer. Some will live in Scarred Acres the rest of their lives.”
We are working hard, RB is working hardest of all, to rehabilitate and hopefully-one day-in the far or near future, we might move from Scarred Acres.
Reading Donna’s Cancer Story has taught me the importance of choosing hope. We are making future plans. They may be castles in the sky, but one day my strong superhero Robot Boy might turn them into bricks and mortar.
I’d like to leave you with this link to a sad yet heart-lightening video of Donna’s joyful moments.
Hello, Readers. Yes, Virginia, The Wordsmith does exist. It’s been a bit since I’ve written a blog post. I promise I’ve been working tirelessly on my novel the whole time. Really. I’m nearly almost halfway kind of completely close to being finished the first draft. My friend also recently invited me to join her writing group, for which I am glad. Because how is my novel going to become a best seller if experienced readers and writers don’t give me their input?
To all my bloggy friends, I have a backlog of your blogs to read. I swear I’m not ignoring them. Although, I might not get to everyone’s posts before the release of “Memos From Your Closet Monster 2.” (If you haven’t read the original, give it a read. Also, I have no idea if there will be a sequel. Maybe. . . ??)
Anyhoo, since it’s nigh the end of 2012, and we’ve all apparently survived the apocalypse, I’ve decided to comprise yet another year in review.
Number 1: Cancer – If you’re just tuning in, you can catch up here. It looks like we might be almost closely completely finished most of RB’s treatment for now. No idea of when he’ll be discharged. It’s been a long ten months. Everyday is another battle. But, we started out 2012 with a sick child and no idea of what was causing his illness. We found out, and although it was a devastating diagnosis, RB’s been making it look like a cake walk, and for that I am very thankful. He’s recovered more than the doctors said he would, and he continues to improve all the time. That kid’s my hero.
Number 2: Related to number one. I was reminded of the kindness within my fellow humans at a time when I was certain there was no compassion left in the universe. People gave donations, time, and labor to help our family. My employer has been unbelievably considerate and understanding during this difficult time. My coworkers organized a fundraiser, as did my cousins-on both sides of the family. My mom’s coworkers organized a carwash at their store, and the Down South Rollers held a carshow benefit for RB. So many people went far beyond anything we’d ever expected, and there are probably folks I am forgetting. I sincerely apologize for that, but it only proves how many people were involved in assisting us that I can’t remember them all without a detailed list.
(I’m still missing some photos from one event held at Zaddie’s Tavern for RB by cousins. If any one of you have some of theses photos, please pass them along. Thank you!)
My very selfless friend at Observations from an Overworked Momma organized an online auction for RB. She even went so far as to acquire several children’s books, signed by author Cornell Landry even. She, along with some of our other friends, visited RB at the hospital for Christmas and brought us gifts and care packages. I love these guys, y’all.
My friend about whom I’ve previously written The Otherwordly Goddess of Script got me a giftcard to Walgreens. Those of you who have been following my blog long enough know the significance of this!
I’ve made friends since RB’s admission to CHNOLA, too. We are blessed with family and friends who are always willing to help out and support us, and without these people, I wouldn’t be able to function.
Number 3: Also related to numbers one and two. Through my blog, and because of our shared hope in finding a cure, I’ve met several wonderfully inspiring people who have helped me remain positive more than they probably know. Their optimism has helped me remember that I should stay hopeful even in the face of adversity. Kudos to you The Monster in Your Closet , Pinwheels and Poppies, and The Lucky Mom. (Sorry if I left anyone out. I love you all!)
Number 5: Being included in The Monster in Your Closet’s FTIAT series. Writing my entry and reading the others has helped me, again, realize although times are hard, there is always something for which to be thankful. Plus, it’s a big deal to a writer who was only published one other time this year (and rejected many times). Oh, you missed it? Well, go on and read away at The Foliate Oak Literary Journal. (Deb, I’m adding your thing on future submission letters, by the way. Just to let you know. ;})
Number 6: In fiction, there is a point where the protagonist has a major change. It’s near the climax of the story, usually. Either there is a physical battle or an emotional one; it transfigures the protagonist. Somehow, after Hurricane Katrina, I felt the change a little. I was touched by the kindness we received, but was also tarnished by the derision to which we were subjected. Things are different now, and this is my battle. I know there’s been a metamorphosis, an evolution. The snide cynic in me still exists, but she is muted by the newly emerged optimist, the person who will still fight for what’s right but is more understanding and compassionate. In the words of Jules Winnfield (Samuel L. Jackson) via Pulp Fiction, “I’m trying real hard to be the shepherd.”
Number 7: Fibromyalgia. Yep. I was diagnosed on the 29th of November. Because why the not at this point, right? At any rate, I’ve been taking my meds like a good little girl, eating right, exercising, and treating my body a lot better. I cut caffeine almost out completely, and I quit drinking. My doctor also decided I have depression and anxiety (can’t imagine why), and since starting my medicine and resuming my daily yoga and meditation, I’ve been feeling much better. I still feel like the Tin Man when I wake up in the morning, but after forcing myself to stretch and move my stiff muscles, I start to feel much more productive. My fatigue is somewhat better, but somedays are still rough. I will see my doctor again for a follow up in January, and I’m hopeful he will be able to help me with my unresolved issues. Fibromyalgia is the perfect example of irony, because it causes stiffness and pain that makes the patient want to be still, but the pain and stiffness is only relieved by moving around. Universe. You’ve one upped me again. But, don’t worry. You’re not putting me down that easily. “So I’ll do as I please like the well-tempered breeze, blowin’ which way I see fit. I’ll grey with the clay seven days till the day when they throw me on the potter’s scrap heap. But take my advice; you’ll have to bury me twice, ’cause the first time I won’t rest easily. But don’t let me die still wondering what it was I left behind.” “Don’t Let Me Die Still Wondering” Flogging Molly
Number 8: I don’t know how many of these I should have, so I’ll just add another one. SPOILER ALERT! If you haven’t read the 700th and final issue of the Amazing Spider-Man, don’t read this part. Peter Parker dies in an epic battle with Doc Oc; they somehow switch bodies, and Peter Parker dies in Otto’s body. Doc Oc takes over Peter’s body and receives all of his memories, thoughts, and feelings of responsibility-supposedly. He becomes the Superior Spider-Man. WHATEVER! RIP ASM. You’ve been part of my life for many, many years. I won’t forget you, PP. “With great power comes great responsibility.”
Number 9: I lost 5 pounds.
Number 10: I wrote a blog post! Finally!
Auld lang syne, and all that, folks! May you all have a wonderful 2013 filled with health, happiness, and good fortune.
I’m late on my post, but it’s something I wanted to share. Yesterday was a bad day for me, what with the baby in the hospital and all. I longed to be spending my time with my family-at the park and having dinner like we did last Mother’s Day.
I wanted to write this as a dedication to some very special women in my life. Later is better than never, I guess.
I want to start with my maternal grandmother. She was born in 1926, but don’t tell anyone I told you. Her parents came to the good ol’ USA from Italy in the early 1900’s (or late 1800’s, I’m fuzzy on the details). My great-grandmother passed away when I was a toddler, but I vaguely remember that she spoke broken English and had a bird. She was a determined, strong woman who raised four kids and divorced her abusive husband-a very big deal to an Italian Catholic at that time. But she did what she had to, and they never had much, but they had what was important-lots of family. And pasta. I’m assuming the last part, but I know when I was growing up we always had a lot of that at my grandma’s.
I don’t know a whole lot about her youth, and I can’t begin to imagine what life was like for my grandma, the eldest of her siblings, helping raise the others. I figure things got pretty harsh at times, especially during the Depression. But they made it through, by the grace of God and by doing what was neccesary.
In her twenties, my grandma met and married my grandpa. They had three kids, one of which is my mother. The other two are my uncles. In his infancy, my grandmother’s middle son suffered an illness that left him disabled. I don’t even think my grandparents were given a clear answer at the time, but all I know is that my uncle suffered a high fever that damaged his young brain.
My grandmother spent days, weeks, months, years in and out of the hospital with my uncle-the very same hospital I am at now with Doodles. My uncle required many surgeries that spanned into his late teens or early twenties. She was told he wouldn’t walk or speak, but he does both-albeit with difficulty-and although age is taking the inevitable toll, he is able to participate in daily activities. He’s nearing sixty, and my grandmother-nearing eighty-six-is still caring for him.
I’ve learned that my grandmother has been inconsolable since she learned of Doodles’s illness, and I understand why. She is a mother, and she has been where I am, struggling, hoping, praying, begging for her son’s life. I am nearly her carbon copy, experiencing the same heartache, uncertainties, and longing that she did so many years ago. She is the only person near to me now that understands what it is to be me now, understands how it is to be the mother of a child with a life threatening and debilitating condition. She is one of an innumerable amount of reasons that I refuse to walk with my head down during this difficult time.
My grandmother’s youngest child is none other than my own mom. I don’t know how to begin to describe this woman. She is vibrant, exuberant, hard-working, no-holds-barred, badass, outspoken, lively, extroverted, loving, level-headed, funny, optimistic, and just a little quirky. She is the reason I love reading and writing. She is the reason I am everything I am today. I am proud to be her daughter. She is the reason I am proud to be a woman.
In this chapter of my life, my mother is my best-friend. Not always the case. There were those teenage years when I was becoming my own independent person, and we butted heads-a lot. But as an adult, and especially as a mother, I know she was kicking my ass down the right path. Figuratively, of course.
She is the woman who first introduced me to Stephen King and Edgar Allan Poe and Hitchcock and old time movie monsters and scary movies and all the frightfully delightful things I adore. She is the woman who nurtured my imagination and creativity. She’s the woman with whom I sat on so many Saturday mornings or evenings watching pitifully horrible B movies and laughing our asses off (still do). She is the woman I would be if I were a better woman.
Lastly, I want to write about my late paternal grandmother. Like my maternal grandmother, I know little of her childhood, but I do know she was born and raised in rural Louisiana on a farm. At some point, they moved to the city, then the suburbs. She married my grandfather and they had three sons, one of which is, of course, my father.
I understand that in her youth she suffered an ailment in her legs that required the wearing of braces, and she continued to have some problems into adulthood. She worked hard to raise her kids while my grandfather worked shift work at a local refinery.
After the floods of Hurricane Katrina claimed their home, my grandparents moved back to the country to live out their twilight years. My grandmother became ill and didn’t recover, passing away just over a month before Doodles was born. She was so excited to have a great-grandchild, and if there is an afterlife, maybe she’s there watching us now and sending positive energy our way.
I love these women. They have shaped who I am. They deserve recognition everyday. And I thank them.