Saturday, April 19, 2014

April 19th

Blogging Friends.... Today is C.D.H. Awareness Day. Yes, I know that I mentioned this a little over twain weeks ago. However. April 19th is International Day of Congenital Diaphragmatic Hernia Awareness, thus according to CHERUBS. See. Apparently, there are twain different wonderful organizations that raise awareness for congenital diaphragmatic hernia. CHERUBS. And Breath of Hope. According to CHERUBS, April is also C.D.H. Awareness Month!! Cool!! While CHERUBS is seemingly much more broadly known than Breath of Hope, I find it neat {Especially when the fatality/survival rates are still fifty/fifty.} that there's not one, but twain separate C.D.H. awareness days. Because. When people know diddlysquat about this life threatening birth defect? Twain dates equals double the awareness!! And that is a positive. Love you later.

Back in February, a dear C.D.H. Mama named Terri--founder of the Raising Healthy Congenital Diaphragmatic Hernia Children's Facebook page--organized "Living with Scars" project which encouraged Followers {Young and "old"!!} to submit pictures of their C.D.H. scar{s} along with something written expressing how these "blemish{es}" make them feel on a deeply profound level. This was, I thought, quite the fun and eye-opening project!! Being a modest person, I chose not to participate. However. Being the "outsider looking in", I did send Terri via comment this. It was taken from my Life Story!! I did not made any changes to it. I don't think, anyway!!

Across my chubby abdomen is this lengthy surgically-created scar. Again, an indelible, visual reminder of a medical history which I--or nobody--had any control over. I have often found myself referring to this physical blemish as my battle scar. Which is not at all an inaccurate description!! Not at all. For this scar is an "imperfection" serving as evidence that I am a survivor. Somehow. Yet, I can touch this abdomen scar--run my fingers all the way down it--as an incredible reminder that "I've come a long way, baby". Because I have. See, I do not need any reminders to glance upward and thank God for my existence. An abdomen scar suffices just fine!!

Either I am "hard to kill" as that phrase goes, or our Loving and Sovereign God was watching over me. How about both?

Happy International Day of Congenital Diaphragmatic Hernia Awareness.

Tomorrow is Easter!! Or as we prefer to call it around here. Resurrection Sunday!! Have a happy, happy, happy one, my dear Blogging Friends!!



Tuesday, April 15, 2014

"Did I Just Say That Out Loud?"

Blogging Friends.... Thank-you, thank-you, thank-you for all of your encouraging comments on the other day's post!! I truly appreciated them. You, dear Friends, are such wonderful "support" to me, and I am such a pain in the ass!! Sorry about that. I AM a "published" writer!! I do not want to become one. I AM. By the way? Jezabelle does not only buck and attempt to throw me on account of my lifelong dream. It is other issues, as well. That was merely a true story example. My newfound mantra has become "Ride like the wind, Jezabelle." Love you later.

There is a small resin sign that looks like wood being sold at Hallmark. It states, in bold uppercase letters, these words. Did I Just Say That Out Loud? I've seriously considered purchasing it for my bedroom as a valid reminder that I can sometimes blurt things out {Often quirky!!} in a blunt, forward manner. But then. I would also have to purchase the matching small sign that reads this. OCD: Obsessive Chocolate Disorder, and those signs are not cheap. Anyway. I have worked on improving this character defect over the years. Honest!! Now, I am very good at keeping secrets. Baby news. Christmas surprises. Huge weighty subjects. And I tend to hold a lot inside me. A lot. So less than twain years ago when I learned about Robert Downey Jr.'s past {Has it really been that long? Wow.} I learned about all sorts of things, including--yes--some hard drugs. But being good at keeping secrets? I've never--never--let on to anybody everything that I know. Especially because my loving, non-controlling Mom did not wish for me to learn about Robert Downey Jr.'s past at all. Would everything that I have knowledge of break her heart? I can't help but wonder. So I have held everything inside me. Until Saturday, April 5th, 2014, when we were eating homemade pizza dinner with a friend. Suddenly, he--who shall remain nameless!!--randomly mentioned the term "smoking rock". This friend then looked directly at me and gently said something to this effect. "That was meant for your Dad. I don't expect you to get it. Sorry." But. I did get that reference!! Then suddenly, sans warning, I spoke up. "Oh, I know what 'smoking rock' means," I said, "I'm a Robert Downey Jr. fanatic, so I kinda have to." That was blunt. Way too blunt. And it lacked a little thing called "empathy". Whoops. My heart raced. Thump, thump, thump, thump, thump, thump, thump, thump. It was jamming away for Bruce Springsteen's band when I felt immensely guilty, as though, I, myself, had got caught smoking cigarettes behind our green backyard shed. Did I just say that out loud? This shocked the pants off of my Dad. Because why should I--a sheltered homeschooled graduate--know anything about smoking rock? He then turned to my Mom and asked this. "You let her read that?" And my Mom--equally shocked--answered with this. "She's--how old are you?" Thirty. Although I was twenty-eight years old when I learned about Robert Downey Jr.'s past. And you know what? I am also educated on how cocaine abuse can mess with an addict's head. Facts which I shall spare you of. Your welcome. I shall also spare you the specific Robert Downey Jr. quotation from which I became familiar with the term "smoking rock". Because he said four f-bombs--I counted them--plus it was a hauntingly sad, surreal glimpse into one ex-addict's life of being desperate for coke. Your welcome again. I then went on and painted Robert Downey Jr. in a truthful, real, positive light to our friend. Such as this. Robert Downey Jr. spent his 49th birthday with elementary-aged kids and watched "Captain America: The Winter Soldier". I will never tire of doing that. Painting Robert Downey Jr. in a positive light. Why? Because he is--and I believe always was!!--a good guy. My how far Robert Downey Jr. has travelled in Life. From smoking rock {And tons of it} to watching "Captain America" with kids who idolize him as Tony Stark/Iron Man. It is nothing short of beautiful.      








Friday, April 11, 2014

Jezabelle

Blogging Friends.... This post has been being written in my crazy never-shuts-down head for quite some time. I am really proud of it. Proud of myself. Love you later.

"I like Pinto Horses," I declared one afternoon while walking through a local county fair alongside my family of six, "Because they're pretty!!" I had taken a moment to observe some Pinto Horse's muscular white body with brown splotches. It looked as though the Ultimate Artist Himself, God, had personally painted them!! Using His own Fingers!! As the years passed by, I actually rode a horse--named Callie--who belonged to my cousin, Desiree. Callie was mostly all white with some brown splotches. Like a Pinto Horse!! I do not recall how old I was. Young enough to make myself terrified of falling off of Callie due to how Hollywood actor Christopher Reeve became paralyzed. Was he still alive? Or had Christopher Reeve passed on? I haven't a clue. All I know is that I am a fanatic of Christopher Reeve as Superman. I remember praying for him after his horseback riding accident, and I strongly believed that he would walk again. I went from a little kid who watched him play Clark Kent--my first Superhero love--to twenty years old when he died, and I was completely heartbroken. Completely heartbroken. Either I was insane or stupid or both, but when I mounted Callie's back, I did not wear a helmet. I refused one. For twain reasons. One, having been born with craniosynostosis, I possess an oddly shaped skull. If tomboyish baseball caps and chic top hats will not fit my head, then no helmet will. Two, having been born with craniosynostosis, I possess a freakishly hard skull. Besides. I had already survived falling backwards out of our yellow/white Chevrolet Suburban while wearing roller skates. Tons of blood and zero stitches later, I only became crazier. Well. I immediately regretted this insane no-helmet decision both mentally and emotionally. Me--who is afraid of falling--was so very high from the ground!! And I did not have a helmet on?! Stupid, stupid, stupid. They say that horses can smell fear, to which I agree. As I rode Callie, Desiree walking alongside me, Callie was--if I remember correctly!!--quite nervous!! I anxiously kept saying "whoa", which to Callie meant "hoe", or stop. {If I spelled that right!!} So Callie kept abruptly stopping!! Desiree, who could also read my fear, asked if I wanted Callie to trot. I said "yes". I lied. Now. Before I sat on Callie's saddle, my Uncle Tom distinctively told me not to scream. And what did I do when Callie trotted? That's right. I screamed. But thankfully, Callie never bucked me off, and I did not fall on my oddly-shaped rock-hard head, so everything went smoothly!! Callie, I must add, was recently euthanized. Metaphorically speaking, my negative feelings/emotions/thoughts--which are the sole cause of minor mood swing-infused pity parties--feel like some powerful wild and unruly muscular mare. I decided to name her. Well, at first, he was this handsome stallion, but I eventually gave him a "sex change". I altered his name, as well. Then, as I meditated on my negative feelings/emotions/thoughts, I decided that she is a beautiful Pinto Horse. Her name's Jezabelle. What? I love that Bible name, but could never give it to a canine. Or daughter. Or character. Oh wait. I just gave the name Jezabelle to a character, didn't I? Anyhoo. Whether I want to or not, even sans knowing it, I am continuously mounted on Jezabelle's back. Sometimes she calmly walks along, as I feel her stomach against my legs. But sometimes? Jezabelle, being the wild and untamed mare that she is, attempts her very best efforts in bucking me off. With every negative feeling? Jezabelle bucks. With every negative emotion? Jezabelle bucks. With every negative thought? Jezabelle bucks. With every hot tear that trickles down my cheek? I hold on tight {As though my life depends on it!!} to Jezabelle's leather reins. With every minor mood swing-infused pity party, whether long or short? Jezabelle throws me. There are, of course, some physical and emotional repercussions afterward--I call them "mood swing hangovers"--such as a spitting headache. But I survive every time. And I only manage to walk away stronger, as my perspective on Life becomes even better. Somehow. Jezabelle can break me mentally and emotionally. However. Jezabelle cannot kill me. Because I'm "hard to kill", as that phrase goes. Lately? I have found myself in the oddly wonderful place of gripping Jezabelle's reins so tight that my knuckles turn white. For example. I randomly visited somebody's Blog yesterday--she published her memoir--and was celebrating in a bookstore. In a bookstore. You know what? Jealousy didn't strike me that this Blogger is published and I am not. No. I still find myself at peace--for the most part--with God's answer to me that I shouldn't be a published author. Not can't. I shouldn't be a published author because my prolific Writing Projects keep me emotionally and mentally sane. Yes. My Writing Projects keep minor mood swing-infused pity parties at bay!! And I so desperately need that. Sanity. Because. With sanity, to me, also comes happiness!! No. It was the very sight of a bookstore {With its wall-to-wall published literature} and my "books" are not being sold there that suddenly hit hard. But then. Before I could throw myself yet another pity party, I wrote this down in protest against any negative emotions. I don't want to be a published author. Not right now at least. Published authors aren't allowed the time to write as prolifically as I do. I need that. The time. Which I have been so blessed with. I need the time to write monthly "books". It maintains my emotional/mental sanity. I'm. Livin'. The. Dream!!

Ride like the wind, Jezabelle. I know, sans a doubt, that you will throw me off again. And again. And again. And again. Although it has not occurred in quite some time!! But meanwhile? I am holding on tight to your leather reins. I will tame you in good time.
  

Tuesday, April 8, 2014

Multitasking

Blogging Friends.... I would like to clarify something about the other day's post. I wrote this. Then, in my teenage years, I developed a "thing" for Harrison Ford. Well, he hardly counted, anyway. I was really in love with Han Solo!! Wrong. Days after clicking "publish", I flashed back to my teenage self. Scary.... Anyway, I then remembered that I also had "thing" for Indiana Jones. Especially in the last film!! Swoon!! So yeah. Harrison Ford does, in fact, count as one of my "old guy" Hollywood celebrity crushes!! And you gotta love Han Solo!! As I promised, here is a story about Rose!! Love you later.

Multitasking. They say that this comes naturally to women and girls. Well. They have evidentially never met me. Because frankly? Multitasking can overwhelm and stress me out!! Why? I haven't a clue!! Perhaps this is because I am learning disabled. Therefore, I do everything at my own slow pace. Or maybe. Just maybe. My attention deficit disorder and fierce sense of focus on one task interferes. Either way, I am no "Supermom". And I have never found multitasking as one of my strengths. Never. Last Thursday, during partly sunny weather, I was taking my two-year old niece, "Amethyst", for a ride in her red hard plastic Radio Flyer wagon around our suburban cul-de-sac. I snapped the black belt around "Amethyst's" chubby tummy. Then I noticed that Rose felt left out and wanted to come with on our "adventure". Okay!! I happily linked the red leash to Rose's collar. Then, outside we stepped!! My youngest brother--Uncle Michael to Rose but just Michael to "Amethyst"--pulled the wagon while I walked Rose. At first. After one or two times around the cul-de-sac, Michael got bored and stepped back inside."Amethyst", ever observant, saw Michael leaving. I asked her if she would like to go back inside also. No. So around and around and around the cul-de-sac I walked. I was on my own this time. My left arm held the hard ebony plastic wagon handle. We heard a flock of Canada geese honk, honk, honking away. I picked some "lellow" dandelions for "Amethyst" to hold in her chubby little hands. We saw a tiny bushtit, and I taught "Amethyst" that word. She can say it now. From clear down the cul-de-sac, we could hear our next door neighbor's black and white Border Collie/St. Bernard mix, Zeke, bark loudly. "Amethyst" loves that crazy canine!! As my right hand held Rose's leash, I felt an odd sense of gratitude that I was born with two complete arms. Eventually, Rose decided that, like Michael, she, too, was bored of our same-old-same-old walk around the cul-de-sac. So my iron willed little girl tensed up every muscle within her shoulders and stopped walking. On several occasions!! But my long skinny right arm kept pulling Rose along!! At one point I even said this aloud. "To quote Tony Stark from 'Iron Man 3'. 'Stop stopping!' ". We must have looked like a sight to behold, for it felt as though I was being torn in twain opposite directions toward the end of our walk, pulling a red wagon and my canine....

I was doing it. I was multitasking!!     

Friday, April 4, 2014

Love You Later

Blogging Friends.... In case you have noticed, I've began closing comments with "Love you later". See, Robert Downey Jr. won a Kids' Choice Award the other day for "Best Butt Kicker", and he closed his speech with the words "love you later". I liked that!! A lot!! So now, I am writing/saying it. Because I am an oddball, and proud of it!! Love you later.

I seldom ever double-post. But this was just written in my private Word Document journal. It needed to be shared. Right. Now.

You know what? I have, throughout probably my entire life, loved "old guy" Hollywood celebrities. It began with Dick Van Dyke, I believe. When I was a little girl watching "Diagnosis Murder". I also "crushed" on his son, Barry. But only because he played a policeman!! Okay? I am a sucker for men in uniform!! Anyway. Then, in my teenage years, I developed a "thing" for Harrison Ford. Well, he hardly counted, anyway. I was really in love with Han Solo!! However. Being "in love" with Harrison Ford brought on some teasing from family for "liking" someone who is old enough to be my Grandfather. Sorry, Harry!! Next up was Tom Hanks--who, by the way, is the same age as my Mom!!--and whenever anybody were to ask me how old he was I refused to reveal it. Yes, refused. Fast forward to today. I love, love, love Robert Downey Jr.!! Love, love, love. A dude who used to be so "lost, lost in narcotics", that everybody--friends, family, the world at large--predicted an "untimely death" on his behalf. Well. Robert Downey Jr. turned 49 years young today--nearly midway to 100!!--and for the first time, for the first time, I am unashamed at admitting an actor's age. Because I'm so proud. Proud of him!! And because all logic screams through a blow horn that Robert Downey Jr. never should have made it this far. To age 49. Thank God that Robert Downey Jr. is "hard to kill"!! Do you see the things he does to me?!

Happy, happy, happy birthday, Robert Downey Jr.!! Here's to many, many, many more.


Jayden

Blogging Friends.... I know I owe you all a story about Rose. Looking back at my Blog post archives, I realize that it has been several weeks since I last wrote about Rose!! But never fear. Rose stories will come, I promise!! I actually plan to write one up today!! Love you later.
  
C.D.H. is, I think, much like a raging forest fire. Children born with it are fragile yet strong trees. Sometimes. The raging forest fire of C.D.H. can burn its trees, scalding them badly. These such C.D.H. children then live most of their lives with unwanted health issues. Sometimes. The raging forest fire of C.D.H. can merely singe its trees. Such as in my case. Then the only sign that there ever was a raging forest fire at all is very visible yet beautiful scars. And tragically. Sometimes. The raging forest fire of C.D.H. can burn its trees to ash. As C.D.H. children are still dying. But I have personally witnessed something miraculous firsthand. Even trees that have been badly burned grow back afresh!! Never lose hope.

Just days after I posted this--on April 2nd--the "raging forest fire" of congenital diaphragmatic hernia, heartbreakingly, took another "tree". His name was Jayden. I visit a dear C.D.H. Mama's Facebook page, "Raising Healthy Congenital Diaphragmatic Hernia Children"--and am the "outsider looking in"--so, as I read about Beautifully Unique Kindred Spirits, I "knew" Jayden. Best to my knowledge, his Mommy never Blogged. I haven't a clue what he looked like. But I "knew" Jayden. I read all about his brave battles against C.D.H., how severe it was, complications, trials and triumphs on Facebook. I "knew" Jayden. And I, along with everyone else in that Online community, prayed for his survival.

This is taken from my private Word document journal upon reading the sad news. It's real and uncensored. For those of you who have issues with that, go and have a chat with my raw emotions. They will win the argument.

It hurts to be a survivor of C.D.H. sometimes.... It hurts like hell.... It hurts so damn hard.... I am alive.... My heart is beating within my chest.... Blood flows fluently through my veins.... I just wrote my ninth "book".... And yet.... Another precious Beautifully Unique little dude just lost his life today.... My Kindred Spirit C.D.H. Buddy's name was Jayden.... Rest in peace....


Monday, March 31, 2014

March 31st

Look for my April children's story to be posted on Minuscule is good! {Lord willing!!} on Wednesday!! I just finished writing it this afternoon!!

Today--March 31st--is C.D.H. Awareness Day. You know what? I went thirty years of my entire long life as a congenital diaphragmatic hernia survivor without having known that this day even exists. And. According to Breath of Hope's Blog, March is also C.D.H. Awareness Month!! Which, is a fact that I just learned the other day. So!! In honor of this being C.D.H. Awareness Day. Here is a virtual shout-out to "my" Beautifully Unique Kindred Spirit Blogging Buddies. Killian, Whitney, Timoteo, Wyatt, Ramsey, Ava, Catherine, Parker, Clara, Jude, Clay, Memphis, Sunni, Bonnie, Atiksh, Camden, Oliver, and Jim Beau. Here is an analogy {Which I "sent" via comment to a dear C.D.H. Mama!!} that my crazy never-shuts-down head wrote.

C.D.H. is, I think, much like a raging forest fire. Children born with it are fragile yet strong trees. Sometimes. The raging forest fire of C.D.H. can burn its trees, scalding them badly. These such C.D.H. children then live most of their lives with unwanted health issues. Sometimes. The raging forest fire of C.D.H. can merely singe its trees. Such as in my case. Then the only sign that there ever was a raging forest fire at all is very visible yet beautiful scars. And tragically. Sometimes. The raging forest fire of C.D.H. can burn its trees to ash. As C.D.H. children are still dying. But I have personally witnessed something miraculous firsthand. Even trees that have been badly burned grow back afresh!! Never lose hope.

Happy C.D.H. Awareness Day.