The Indies Unite for Joshua Challenge

 Indies Unite for Joshua +George Mark House = An Awesome Cause

Psst. You. Yeah You! Come over here. You heard of IndiesUnite 4 Joshua? What do you mean ‘No you haven’t’? Well are you a fan of helping at least one person kick cancer in the A**? Would you like to put up to fifteen dollars in the fund and best of all they wouldn’t even be your dollars?

Well have I got a deal for you. Because you can choose to do one of two things right now that could send fifteen bucks their way. Sound too good to be true? It ain’t. I can promise you that. So what is it that I’m asking you to do that will *magically* put fifteen bucks into the Indies Unite 4 Joshua campaign?

That’s easy:

1. Send out some twitter love to George Mark House. (What? I can have layers, and ulterior motives. So sue me.)
   
   Let me explain:
   
   If you’ve been around my site for any length of time (although to be fair, who has? Heh) you know about my love of George Mark House.(Don’t know about them? Here’s their website. Want to know what they’ve done for my family? Start here or just click the tag George Mark House and see my archives on the subject.) They are a wonderful organization that helped me and also helps families like Josh’s, who are struggling to manage their own care of a life debilitating disease or disorder. They help pediatric patients with a variety of issues in a variety of ways, up to and including respite care, transitional care from hospital to home, and last but certainly not least, palliative care issues. But of course that’s not all they do. They aren’t just a pediatric hospice house, they are also; A place where a mini-horse can be in a patient’s room, a place where a camel makes house calls, a place where special needs teens can have their own prom and a place where families who have lost children can go to remember those they’ve lost and celebrate who they are, and that’s just to name a few things that they are.
   
   So what does this have to do with Indies Unite for Joshua? Well I’m all about spreading the love around. And based on the people I’ve met during the Indies Unite for Joshua campaign, I know you are too. You people have generous hearts and unbridled energy to match. So this is what I’m proposing. I want as many people as I can to know about what they do and who they are so that they get the notoriety and hopefully the funding they deserve and need to keep their doors open.
   
   So tweet the following:
   
   George Mark House helps children with life-limiting illnesses and their families. Learn more about them: georgemark.org. #GMCH @tyliag
   
   Get your friends to do the same. If I can get twenty+ individual unique people to tweet this and send it back to me by the end of day Friday, the deadline being right before the spreecast party, I’ll give Indies Unite for Joshua a five spot. If I can get fifty+ people, Indies Unite for Joshua will get a ten spot. All you have to do is show George Mark House some love and its money in the bank.
2. Write a blog post about George Mark and send me a link. You can link one of my blog posts if you want, or you can link that awesome story from CNN about them, or better yet, send Ben Tuller and his awesome documentary about George Mark House called A New Way Home some much needed recognition. If I can get five people to shout out to George Mark House on their blogs by Friday’s spreecast party, Indies Unite for Joshua will get another five. Please note that since I don’t have Facebook, I won’t be counting Facebook links or mentions to the five+ total. I totally encourage you to put it on Facebook, and if you can, please do, but Facebook pages won’t count towards the total.
   
   So there you go. I know I’m only giving you less than two days to accomplish this but I’ve seen what you’re capable of en mass. I know you’ve got the ability, now go out and do it!

Book Review: Tears of the Broken

When it comes to books, I rarely tee one high and swing for the fences because I’m a writer too and I know somebody somewhere could do the same to me and you know what? Writing is hard work and I should acknowledge that, even when I’m reading books I don’t particularly enjoy.

But sometimes a book so monumentally bad comes along that it leaves me no choice. So, without further ado, lets get into this:

So, stop me if you heard this one. I just read this book about a girl who is DIFFERENT and UNIQUE and just moved from her small town to another small town and who meets a boy, a MYSTERIOUS boy who she is ENEXPLICABLY drawn to and who is ENEXPLICABLY drawn to her in return, but this boy is MYSTERIOUSLY MYSTERIOUS and HAS A DEEP DARK SECRET! And that secret is that he happens to be… wait for it…. A VAMPIRE who is a hundred years old, but the girl still loves this weird teenage looking freak and has to reconcile those feelings to be WITH HIM! And she doesn’t care that he sneaks in her room at night because he likes to WATCH HER SLEEP. And they are IN LOVE and their HEARTS ARE ENTERTWINED FOREVER!

Sound Familiar? No, I didn’t read Twilight again. I’m not that desperate. Instead I read Tears of the Broken by A.M. Hudson, which is a cheap knock off of the Twilight series in just about every way imaginable. This book is what would happen if somebody took all the major conceits from Twilight and put it in a blender with pointless dialogue and half-baked plot points and hit pulse.

And the resulting glop is not palatable at all, not in the slightest. 

So here's the plot in a nutshell. A girl (Amara Rose) has to move halfway across the world after her mother and baby brother pass away in a car accident. She's forced to live with her dad and step family and go to another school. She meets a boy, David who is intriguing and who she falls for immediately but he has a secret he can't tell and has to go away. She falls apart because she's in love with him and can't bear losing her family and then him too and it goes all sideways with the teen angst and pointlessness from there.

And I mean POINTLESSNESS. Dialogue gets repeated almost per vatem in some places and certain plot points get totally overlooked or completely stalled so that they can be answered in other books, maybe? There’s the whole hullabaloo about Ara having her best friend (a boy) come stay with her family that gets started and then postponed. Then there’s this big masquerade ball that gets mentioned but also stalls. Yes I get that there needs to be some set up for other books in the series, but this book shouldn’t be all set up and no action. And that’s the really bothersome part. There is actually no pay off at all to be had in this book. There was no climax that I could find, no poignant message to be derived from the drivel, it was just aimlessness, and it was aimlessness that I couldn’t help but draw comparisons to its better counterpart, Twilight, and that’s not saying much, because Twilight, fine I’m just gonna come out and say it, ain’t that great to begin with. It’s good, it’s interesting, but it ain’t that great.

While reading, I didn’t check the publication date, so I tried giving this book the benefit of the doubt, like maybe it didn’t rip off the Twilight series wholesale in hopes of scalping some of its readers. Maybe it came before it and Meyers decided to perfect the idea, who knows right? Nope. No such luck that. Hudson even goes so far as to make a comparison to her version of a vampire and Meyer’s version, to wit:

“Well would you expect anything less than fear, David, You’re a dangerous creature. You’re not a Cullen.”

And the emphasis was even the author’s, like she was drawing us in all “see what I did there. And to top that all off there’s even more baiting:

“Great books, though.”

“You read them?”

“Of course.” He breathed out.

She even half-assed her compliment to the books she’s ripping off. Who does that? It’s all just cheaply wrought, which would really piss me off if I didn’t get it for free (Thanks Free Book Dude!). As it is, I feel like the author should’ve paid me to read it, because it felt like WORK that I really didn’t want to do at all. I powered through about 75% of it, and when I got to the last 25%, and I realized the pointlessness of it, it took all of my readerly discipline to finish it. There were several times where I sat the book down and gave it the most massive eye roll I could affect. Because it was eye roll worthy, and very cringe inducing to the point of distraction.

Now that I got all of that out of my system, and because my momma said if I can’t say something nice, I should say anything at all, I’ll attempt, in probably the same half-assed manner as the book was written (heh) to give this steaming turd pile a couple of compliments.

The one thing that I liked about this book is that the main character had the good sense to be disgusted by David (THE VAMPIRE) and repulsed by his feeding off of humans. That drove me nuts about Bella in Twilight, that she’d just accept it and him full-heartedly. That always struck me as odd. At least Ara was not into it, even though it didn’t last long, at least there was some well placed trepidation in play.

Also, the other part I liked was the scene underneath the auditorium stage. It was torrid and flirtatious and when I got there I was like “Finally! Something I can eat up with a spoon.” But it took forever to get there and it fell flat because of all the glop that was before it.

So, in summation, if you feel like you need a book that you could tee up high and send to the rafters on your pure hate fumes alone, this book should be right up your ally. Otherwise skip it. Final Grade: D! Minus! I’d give you an F but that would only mean having to see you in summer school!

Short Story: Pool Mishap

She knew she should unpack and start a load of laundry, but the Texas heat was unbearable. She’d unpack later in the evening when the heat subsided just a little. She hadn’t been home more than 12 hours but she was itching to get out. Not that there was much to get out to.  The ranch house was five miles away from anything resembling a town, and there was nothing to do in the town anyway.

There was one thing to do. The Country Club pool was open and chances were that she’d run into friends. Actually, chances were slim that she’d run into any friends, because she had only a handful in town and those that she had weren’t likely to be at the pool. But chances were pretty high that she’d run into people she’d just graduated high school with and small talk with them was as good as anything she was going to get.

Her best bikini was still packed though and finding it meant unpacking. She had last year’s suit tucked away in her room but she didn’t feel much like digging for it either. She decided she wasn’t going to swim and she’d go to pool  in her t-shirt and cut-off jean shorts instead. Plus, she still had the earrings she got on her trip, and she didn’t feel much like taking them off. She’d sit on the edge and dip her feet in instead. She grabbed the keys to the old truck left out in the drive way, wrote a note for her parents to find and left it on the kitchen counter.

The old truck was unbearable on the best days, and excruciating to get into on a hot day like the day she was currently experiencing. The air conditioner wasn’t in the best of shape and took forever to cool down the interior, but she took her chances anyway and plodded her way to pool.

Her friends, as expected, weren’t there, but some familiar faces were. Chad Henderson was manning the lifeguard tower. A few kids that Tara had spent considerable time babysitting and their parents happened to be hanging by the pool. She smiled and waved to a few. Christa Summers, a grade younger than her and someone who didn’t make her want to tear her hair out was lounging in a patio chair by the pool. She was as good a person as any.

“Oh my god Tara, you’re back.” She almost shrieked. Tara sheepishly waved and made her way. “When’d you get in?”

“Last night.” Tara smiled. “I should be unpacking but…”

Internet Intern Wanted

Alternate titles for this post include:

Internet Tutor Needed.

OR

Hey you, nerdy teenager with impeccable computer skills and no social life! Yeah You! I have a job for you.

Here's the thing. When it comes to this internet thing, I could use some guidance, or more like a swift kick in the but in the right direction or directions I should be pursuing when it comes to this internet stuff. Because its not stuff I'm automatically going to seek out on my own. I mean, how long have I had this blog and how long did it take me to embed a freaking video?

And that? Was easy, but it was still something I was timid about doing for about a bajillion reasons, because what if I embedded and it broke, and how would I fix and .... blah-blah-blah-I'm-a-neurotic-techno-weenie cakes.

And of that one thing that I attempted, there's about a million things I have not attempted because I just don't know enough about it  and am timid enough not to seek these things out on my own. Here's a list of things that I want to know:

• Uhm, how exactly do I set up an RSS feed, and should I really? I mean, the websites I read daily, well I just go there, but is RSS an easier way to keep up with it all? And how... do I do that... exactly?
• Tweet Deck, Hoot Suite? Any of those things? Worth using and signing up for? And if so, how do I use them? What's the proper way to use them?
• I've never used a photo-posting service on Twitter. How do I do that exactly and which one should I use? 
• Edited to Add: Anybody know how to create lists in twitter so that my timeline isn't so crammed all the time? I thought I heard that you can customize lists into categories and put certain users in them so that they aren't automatically viewed in your timeline. This would be immensely helpful, but I'm not sure how to go about it. Any ideas on getting it done would be mightily appreciated.
• Lockerz, what exactly is the point and should I sign up?
• Spotify, better than Pandora? Should I look into it?
• What the hell is Klout and should I sign up?
• I still don't have a Facebook page? Should I bite the bullet already and sign up?
• Is Pinterest worth my time or is the rage over and done and has everybody moved on to something else?
• Is there really a point to Four-square that I should know about?

And these are just the questions off the top of my head. For every one I just came up with, there's probably another ten I can't recall. And these are questions that time has told me I'm not necessarily going to answer for myself on my own. I mean, embedding video took me how long???? Seriously.

So what I want is some enterprising young youth to lead me around the internet by the bullring and show me what's worth my time/what ain't and how to set up and run the stuff that is worth my time. Otherwise I'll probably stay in the self-inflicted dark ages.

Any answers to these questions? Care to shed a little light on my internet usage dilemma's? Have a son or daughter who needs an eager reference? Cause I could use the help. Beuller? Beuller? Frye????

Since When did Writing become Hard Work?

The internet kind of freaks me out ya’ll. And I’m not just talking about Chat Roulette and fetish sites either. I’m talking about the myriad of posts I’ve run across in the last few months about all the work I’m supposed to be doing as writer/blogger/producer or media/consumer of media that I’m just not doing.  

It’s stressing me out a little bit. Because here I am, having written a book that I’m trying publish (admittedly half-assedly) and I’m aware of all the stuff I should be doing to get it published but now I’m suddenly really aware of the nine-bajillion other things I should be doing and it kind of makes my brain want to explode. Not only do I need a great synopsis/pitch, and my first three chapters have to be awesome, and blah-blah-blah-get-your-crap-together-cakes. I got that, well not in the since of actually getting it, but in the sense like I’m supposed to get it.

But now there are other things, like making sure my marketing/public image is consistent, that I’m doing enough to be ‘out there’ and be known. Heck I’m not even doing enough to create posts on my own blog but now I’m being told that I should think about guest blogging on other people’s blogs to leverage my own name and you know that it’s a lot of work, even the idea of breaking out as a writer and making a name for myself.

Not that I didn’t know that already. I mean, I watched my mom’s book languish and I’ve seen the issues she’s had self-publishing and self-marketing, but thanks to all these other blogs (Bad Red Head Media and Rachelle Gardner’s blog to name but a few) I feel REALLY overwhelmed. Like Really, Really, Really Overwhelmed.

Since when did writing become such hard work? I always just thought if you wrote good things, and you enjoyed what you wrote, things would fall into place (although, the readership on my blog would beg to differ, heh!). And it’s not like I didn’t know being a writer/blogger/producer of media isn’t work, and that there aren’t pitfalls/issues inherent to this process. But now I’m acutely aware you know? Like REALLY aware, and that awareness ain't making things any easier.

I know I’m not doing enough. I know there’s several things I could be doing to maximize my readership as a blogger and I definitely know there’s things I could be doing to maximize my book’s exposure (but I haven’t edited it for the thirteenth billion time? It’s not ready yet!) And I am taking steps to try and do that. I bought a writer’s package at Indies Unite 4 Joshua, which is a step in the right direction and already Indies Unite 4 Joshua has put in contact with some amazing people, although I don’t know if they know I have a book yet, but hopefully soon they will. I’m dipping my toe into the pool at least, maybe kind of? No?!?! Fine Internet! I know I’m not doing enough! Pipe down so I can watch videos of cats playing piano instead!

My Mother's Day Challenge

For the first time in about three years I’m not dreading Mother’s Day. In fact I’m kind of buoyant about the day, probably because I have so much to celebrate. I have beautiful 7 month old daughter, a husband who loves me, and although I have complaints (all small and tedious) they all fall away because I am so happy in this life.

A far cry from two years ago around this time, huh? The First Mother’s day I had to endure after Ukiah’s death was something else wasn’t it? My scars were so new back then, so fresh and aching from my son’s loss. If there’s anything I could go back and change about that day, it would be my answer to the bagel guy. He asked if I was a mother and because Ukiah was gone and technically I no longer had anything to quote/unquote “Mother” any more, I said no. I should’ve said yes. Just because my child was no longer there doesn’t mean I’m still not his mother, or that my mothering instincts, my ability to give motherly love is no longer there.

Just because my child was gone should not have kept me from stating I was a Mother, because I am a mother to all children who need love, especially to those who need extra love and that is never going to change.

I try to go to Yoga class once a week. Every week my teacher asks us to come up with an intention for our Yoga practice. My intention is always the same, that my love, my wonderful motherly love that I have in spades finds its way to child who needs it. I always picture the Children’s Hospital NICU when I think this, all the tiny premie babies struggling to maintain their breath, beautiful babies having to endure prodding and poking and all manner of challenges just live and I send them my love. I think about George Mark House and all manner of special needs children who might be in their halls and I send them my love, because I have it to give.

We all have it to give, stores of motherly, fatherly, grandmotherly, grandfatherly love. Even if you aren’t a mother, father, grandmother, grandfather yet, you do have the ability to tap unknown depths of love and compassion you never knew you had. And you should look at those limitless stores of love you have within you and do something with it. It doesn’t have to be profound and life-changing. Even the simplest acts of love and compassion can do something incredible.

And I guess that’s the challenge I’d like to offer this Mother’s Day. Yes we should all tell our mothers that we love and appreciate them, but we as mothers should also do something with those stores of love we usually reserve for our own children. Send it out into the universe, either silently or with direct action. Acknowledge that that love you have for your own child is so vast and beautiful and amazing that you can give it out freely, especially to children that need it.

Unfortunately we’ve become overly possessive about love, but its not a possession so much as an element, and just like the elements of earth, wind, water, and fire being for all people and beings, love can be for all people, beings, and things.

Tell something you love it today, a bush you encounter on your walk, the hills and mountains that may be part of your every day scenery, one of your child’s students who may be going through a tough time at school, somebody who might be acting mean because they are having a tough day and feel the need to act out. Tell them you love them unreservedly. Motherly love is the freest, purest, most abundant version of love available. This Mother’s Day, instead of making the day about receiving love for who we are as mothers, we should give that Motherly Love as freely as we possibly can to as many as we possibly can.

Volunteer somewhere for the day, make a donation (To George Mark House perhaps? Or to Indies Unite for Joshua?) tell everyone you love them, even people you don’t know. Dig into those vast depths of love and send out as far as it can go. You’ll be surprised how fast it can be restored.

Shower Fart Obituary

No, before you ask, this is not one of my Made Up Band Names post, because as band names go, this one would be kind of weak, I have to say. (Like what genre of music would a band have to be in to pull this one off? Joke Gothic? Clown Metal Punk? I have no idea.) No, this is literally a thing people would’ve needed for me today. I would’ve needed an actual obituary that explained that my cause of death was a shower fart cause that almost totally happened. I can see this alternate reality in which this obituary would’ve been written.

“The Bloody Munchkin died on Friday, May 4^th, of head trauma related injuries after she let out a fart in the shower that was so potent that it caused her to faint, fall in the shower, hit her head hard enough that she lost consciousness. She was found several hours later by her husband. The cause of death was immediately identified by the potent whiff of fart left lingering in the air. She is survived by….”

The Eulogy would be outstanding:

“I want to talk about The Bloody Munchkin, beloved wife, mother, shower farter….”

And the Epitaph. Oh the Epitaph! Can you imagine?

THE BLOODY MUNCHKIN May she RIP ones for all Eternity

This was almost a thing that actually happened today. I mean it was real touch and go there for a second. Let me explain how though. So I have this not fun at all cold that has left my sinuses in a ruined shambled. My sinuses have become the olfactory equivalent of Thunderdome. Two go in, but only yellow snot comes out. So the smells that come in my system are trapped there for the time being.

So I’m in the shower and I fart. This itself was touch and go. The gas hit me with such force and so abruptly that I wasn’t quite sure what might be coming out of me at that very moment. Caught off guard and with my sinuses left defenseless, I was unprepared for what did come out of me. Eu De “dead skunk stuffed inside a rotting zebra carcass” might be putting it mildly. Actually, a better description might be what my dog’s breath smells like after eating what ever’s been lying on the ground in the hot sun for three days followed by a grass burp chaser, but since you’ve never had the displeasure of knowing what that smells like (wish I could say the same, but I’m not that lucky) you’re just gonna have to trust me when I say it was pretty bad. So bad that my head spun for a bit and I had quite the hard time getting my bearings, so I swayed a little bit. It was that powerful. I had to lean on the shower wall and hack up a lung for a while. It was not pretty.

And somehow this alternate reality popped into my brain, and I thought how embarrassing it would be if I actually went out like that. I mean, it would be my luck to go out like that. I think I’m genetically wired to go out or at least get injured in the clumsiest way possible. My mom broke her wrist on her way to our porch because she was reading the paper and missed a step. She also recently bruised some ribs because she stumbled over a crack in some pavement because she was changing the song on her iPod. The less said about some of my more clumsy moments almost leading to my death the better. There’s something about my family tree that leads me to believe I won’t go out in a blaze of glory or even a romantic, consumptive way, but I’ll be doing something totally random like tying my shoe or trying to cut up some vegetables and then I stop paying attention for 3.2 seconds and boom! Curtains!

So I guess this my friendly reminder to live everyday to the fullest because you could be taken out by your own shower farts. You’re welcome. 

And in light of news that Adam Yauch, AKA Beastie Boys' MCA just passed away, I'd like to reiterate that life it incredibly too short. I feel like a piece of my childhood just died. In fact I haven't felt this bad about a celebrity since Pat Morita died. Cultural touchstone people! I almost thought about not posting this, but given MCA told me I had to fight for my right to party, I really don't think he'd mind much.

The Dead Bird Connection

I’m sometimes weird (more than sometimes, heh). Of the people who really know me, this should come as no surprise. I’m also a very emotional person and I get tied emotionally to things that are seemingly small and inconsequential for reasons I’d be hard pressed to explain. This may or may not come as a surprise to people, but it’s how I am nonetheless. It’s how I’ve always been. I thought it would be something I’d outgrow, but the older I am, and especially after losing Ukiah, I seem to be even more emotional now, and even the smallest things seem to upset me.

Take this weekend for example. It all started Friday night. Maxwell Cynn posted an update on Joshua’s health and it completely wrecked me. I don’t know and have never met Maxwell or Joshua personally. Up to a few weeks ago, I didn’t even know they existed, but after I read Maxwell’s account of Joshua’s diagnosis, I became incontrovertibly linked to their story. I read every post and update made to the fundraiser now, and so I knew I had to read Max’s update on Josh. I sat on the couch, staring at my phone, reading the update and I was wrecked, trying not to sob. My husband gave me one of his patented looks and I had to explain what had happened. As a way of explaining myself I said. “It seems so silly to be so wrapped in something so small.” My husband replied simply, in the way he does “It’s not small to them.” This sent me on a crying jag even more. To date, I’ve given 83 dollars in total to the fund, which although not insignificant, is just a drop in the bucket in the $10,000 total they are hoping to achieve. It’s small, but it looms large in the hearts and minds of Maxwell and his son. And this touches and connects with me in huge and profound ways.

Cut to Saturday morning. My husband and I decided to take our daughter to the zoo for the first time. Despite this being a joyous occasion, there was something that loomed large in both of our minds. We never got to have this experience with Ukiah. We wanted to so badly, but we never could. It was so bittersweet, taking our little girl on an adventure that our little boy could never enjoy.

Cut to Saturday afternoon. Thanks to a comedy of errors, somehow I had discovered a little bird on the ground by our house. It was a little hatchling and didn’t have any feathers to speak of. It hadn’t even opened its eyes. It was struggling and covered with ants. I didn’t see any sign of a mother bird on the ground or in a nearby tree. We did the best to clean him up and get him a safe place to rest. After a few hours, it looked as if the mother wasn’t going to return, so we fed it some ground up meal worms and tried keeping it warm and safe. My hubbie tried convincing me that the mother would return and that he’d be fine, but I didn’t feel that hopeful. I felt inextricably tied to the fate of this little bird. I bought it mealworms for Christ Sake! And then it hit me, why. I realized that if this little bird died, it was another being, like Ukiah that I had failed to keep. This broke my heart.

Despite my gut feelings, I let Chris stick the little bird in the makeshift nest we made for him out in the tree for the night, thinking his mother would find it.

Morning came. I told Chris I didn’t want to get out of bed because it meant facing that little dead bird in the tree that I’d let down. Sure enough, Chris came back in with the Tupperware bowl we’d used as a nest, and showed me the little bird’s body. We both cried bountiful tears for reasons neither of us felt like putting into words. This little dead bird reopened wounds for me and I couldn’t help but bleed.

We named the bird Fred. I don’t know if it was a boy or girl but if episodes of Angel have taught me anything, it’s that a girl can be named Fred as well as a boy. We dug a little hole in our side garden and put Fred’s body in the hole. We said a few kind words and then covered it and put a paver stone on top. I was crushed and worthless the whole rest of the day. I kept looking into the skies, apologizing to the momma bird and crying big tears.

I wish I wasn’t as waylaid by such things in the magnitude that I am. I wish the small things couldn’t penetrate my armor and make me bleed, but after Ukiah, my armor’s pretty battered and thin as it is. But at the same token I’m glad I find such things profound and important. My sensitivity, my emotions are what make me me and I’m proud of who I am. I'm proud of how Ukiah shaped me. I’m proud that small things like a bird’s death or a young man’s fight with leukemia bring me to tears and make me do something or want to do something. 

I'm glad I'm me.

My Healthcare Rant

I rarely get political here for a lot of reasons, partly because I’d rather keep it fun and about pop culture or personal and about my son and my life, but mostly, when I get political, my arguments tend to devolve into rants which then devolve into verbal poo flinging.

(The first video I’ve successfully embedded on this site and its of chimpanzees flinging actual poop. You’re Welcome!)

I’m going to try and get a little political here today anyway. You ready for it? Have you heard of Indies Unite For Joshua? Or how about Rock Star Ronan? Or have you ever done a search on Indiesgogo for health related concerns? Wanna know what they all have in common? They all involve families with sick children seeking outside help because the state of our health care system would only do so much for them if it did anything at all. For those fundraisers out there that I’ve mentioned there’s probably another hundred out there that I don’t know about or haven’t heard of yet. And there’s probably hundreds more families that are in need that have been shifted by their insurance or are having to foot the bill because they don’t have insurance that haven’t taken to the Internet for help yet and are probably mired in a sea of bills and healthcare woes that feel lost in a sea of hopelessness. Why?

Because the state of healthcare in this country is broken, period end stop. We, as a society need to fix it, period end stop. We need to come up with a better system because the system we are using is not working any more, especially for the people who need it most, period end stop. It is broken on so many myriad levels, many of which I am aware of personally to the point that I don’t even know where to begin. So I’ll start with me, and what I’ve had to do to make the healthcare system work for me, a person with reasonably good insurance.

I can remember a particularly bad day a few weeks after Ukiah was born and we’d just brought him home. It was the day after he’d had what I learned later was a respiratory arrest. I was rushing around with him to various appointments and specialists to figure out what was wrong. I’d just found out they we were going to have to readmit him to The Children’s Hospital. On the way home to pick up Chris so that we as a family could go to Children’s and get him readmitted what was I doing? Spending that time on the phone with his insurance because we had the wrong network or something or other and if we did get him readmitted, we may have to pay for the whole thing out of pocket and the appointments I did have that day? Weren’t covered. I should not have had to worry about this, like at all. What I should have gotten was a phone call from the insurance saying, you know what? You have a special needs child and you are going through a lot and he’s getting readmitted to the hospital because his health care problems are escalating and don’t worry about it. But I was worried about it, amongst the Nine million other things I was worried about. Because the system is broken, Period End Stop.

And that’s just me. I can think of a myriad of families I’ve met through my time taking care Ukiah who haven’t had it so good, who, by the very nature of our healthcare system being broken might have been forced into the situation they are now in. There are stories I’ve been told of being dicked by hospitals who were in turn being given the run around by a person’s insurance that may have caused the very nature of their child’s brain injury in the first place. We should have not still have a healthcare system that is causing the very injuries it is trying to help solve. Because the system is broken, Period End Stop.

I can think of families in the Children’s Hospital NICU with extremely sick children who are getting the best care the facility can manage, but because they don’t have insurance or are reliant on state and federal programs, are unsure of how they are going to get the care that child needs. This should not be. The only thing they should have to manage is worrying that their child makes it through the night or gets past a surgery they just received. But the very nature of where health care is right now means they can’t just worry about their child, that they have worry about this too. Because the system is broken, Period End Stop.

I also know that those facilities that are providing the best care they can manage are struggling to provide that care, because of the way the insurance pays for that care and the way federal and state programs pay for them mean they are short changed and are struggling to pay for the doctors, nurses, staff, and state of the art equipment and programs in their facilities. My local pharmacy is currently holding a fundraiser for our Children’s Hospital because it could use the help. Because the system is broken, Period End Stop.

Those nurses and healthcare providers working for those facilities are striking periodically because they in turn are not getting what they need (usually the strikes are based on worker health insurance benefits) in order to make ends meet. I have seen nurses who I know personally, who have provided excellent care for my son at that very Children’s hospital go on strike because they don’t have the insurance benefits and other health benefits they need in order to take care of their own families. Because the hospitals can’t afford to pay for those benefits and everything because they aren’t getting what they need from insurance and state and federally run programs so they are in turn having trouble paying for the benefits of their own health care workers. This should not be, but it is. BECAUSE THE NATURE OF OR HEALTHCARE SYSTEM IN THIS COUNTRY IS BROKEN! PERIOD! END STOP!

To take it a step further, and I don’t want to reveal too much, but I work in an industry that is directly impacted by a number of doctors who have private practices that may have to close their doors in areas that really need the care because they can’t afford to run a practice. BECAUSE THE NATURE OF OR HEALTHCARE SYSTEM IN THIS COUNTRY IS BROKEN! PERIOD! END STOP!

And now I’d like to bring it around full circle. Two weeks before my son passed away, George Mark House had to call me and inform me that they could no longer take patients and were closing their doors indefinitely, because the very nature of what they do meant they couldn’t get the type of payments from Insurance and federally and state run healthcare programs to keep their doors open. Because people, insurance, THE HEALTHCARE SYSTEM doesn’t understand palliative pediatric care or why a wonderful organization who is helping kids and their families not just with end of life care but with overall care who are JUST LIKE ME needs to be paid for by the healthcare system BECAUSE THE SYSTEM IS BROKEN. My son died at home because George Mark House’s Doors couldn’t remain open and we couldn’t bear putting him back into the hospital where he may or may not have made it. If the system wasn’t broken? If George Mark House could get the funding it deserved and its doors remained open? Maybe, maybe not. But we’ll never know. Because the system is broken, and my heart is broken along with it, into a million pieces because he’s no longer with us.

Right now, families like mine are taking to the internet, are taking to the community, are suffering in silence and don’t know where to turn to try and make ends meet when their healthcare and financial concerns get the better of them. And these aren’t just poor families, or families living off the system, these are families that have insurance, have good paying jobs, but that still isn’t enough. Take Indies Unite For Joshua. This family has insurance, but because of the nature of their son’s health problems, insurance isn’t paying for everything. All they are asking for is 10,000 dollars to cover what insurance isn’t and the rest they raise they are giving to Leukemia research. They shouldn’t have to do this. They are asking for what they need to make ends meet, nothing more. All Maxwell and his family should have to worry about is his son’s health. But that just isn’t the case. Good families all over this nation of ours are in similar situations or different situations and they still need help.

So now you know that it is broken. You have concrete proof in front of you, from me slapping you in the face with it. If you looked hard enough you’d have enough material witnesses to keep driving my point home. But knowing that it’s broken isn’t enough. How do we fix it? Well unfortunately I don’t know that answer. What should we be asking is how did it get broken in the first place? Was it because of a handful of people abusing the system making it harder on the normal folks who don’t abuse the system to use it properly? That’s probably part of it. Is it that the business of taking care of people became just that, a business, that healthcare became less about dealing with human health and more about dealing with nickels and dimes? That’s there too I’m sure. If we could completely identify the numerous ways in which it has fractured itself, we might be able to identify ways that we can fix it.

I’m not versed enough in Obama’s National Healthcare mandate plan to know for sure if it can triage the multiple fractures in our system, but I feel it’s a solid starting point that is trying to provide equal healthcare rights for all people, and that is huge. 

I was listening to NPR the other day and they were discussing the arguments for and against the healthcare mandate. Somewhere in the discussion, there was a metaphor made that government mandating a national healthcare policy for all people was the equivalent of telling everyone that we had to eat our broccoli. This is dumbing the argument down to its simplest statement, that the government is trying to tell us all what to do. What I think is really happening is that the government is trying to help us do right by ourselves. By mandating a healthcare plan, the government is telling the nation that every single child who is sitting in a NICU right now is worth working for, that their life is worth it and that they deserve the same care my child got without their parents worrying where the money to care for this child, to protect this child is coming from. And from my perspective, that is huge! A game changer actually.

But do I think that will be enough? Probably not. Fixing all the tiny fractures in the healthcare system means a million different people thinking about the million different choices they make regarding their health, everyone’s health and how they interface with the healthcare system, and that? Ain’t happening overnight. But it is doable and more to the point it is worth doing, for you, for me, for my daughter, for the myriad of children not born who deserve a brighter tomorrow.

But instead of thinking into the abstract future, think about the present. Think about sending ten bucks to George Mark House. Think about telling somebody else about the good things they are doing why they should stay open and how we need to create a future in which their doors stay open for as long as possible. Think about Josh, and his cancer and how, by clearing out his fundraiser as soon as possible that’s less days he and his family have to worry about money-related healthcare concerns and more days they can focus on Josh’s health. Think about finding five more fundraisers just like it and helping them achieve the monetary goals they need and get back to health concerns they should be worrying about. It’s not near where we should be but it is headed in the right direction.

How was that for poo flinging? Was I like Jane Goodall getting a parking ticket?

Thank You for reading.

Book Review: The Warlock

I finally slogged through The Warlock the Fifth book of The Secrets of the Immortal Nicholas Flamel (and again can I just say how non-handy that series title is? Ahem). The funny thing is that I’m kind of drawing a pretty big blank on what happened in this book. I got about halfway through (actually if I remember correctly my Kindle said I was at exactly 50% through the book) when I got to the scene where (spoiler alert) Sophie is giving her energy to Perenelle so she can give her aura to Nicholas so he can survive one more day. There was something about that scene that was kind of a black hole for me so I put the book away and read the three Hunger Games novels followed by Going In Circles so when I came back to it, I didn’t remember much of what had happened.

I have to say though that with the action picking up the way it did in the last half, I kind of regret not reading it all the way through.  The characters they keep piling onto the series and the ways in which they are added continue to liven up the series and keep me enthralled.  But there are so many that it kind of makes my head spin trying to keep up with them all.

The most interesting part of the books is the time bending that takes place. Some of the action takes place in present day San Francisco while a big chunk of it takes place in the past in Danu Talis and trying to keep the time strands straight is a daunting task but ultimately rewarding.

I don’t have much else to say except that I still have the two Amazon only books the Author created to read and hopefully that gets me to May because I’m dying to read the end to this series!

My grade, because I can’t remember enough of the details of this book, because I hit a dead spot in the narration and now can’t keep it all straight is a B-

Ukiah's Birthday

It’s not his fault that I’m the one with the long memory. It really isn’t. I’m the one who still retains connections to objects, that still sees importance in those objects and the memories they relate to, that still wants to cling to those memories. I’ll see something in the donation pile or something that has ended up in the trash  that was associated with Ukiah in some direct or even tangential way and I cease up. There was little bathrobe that was Ukiah’s that was in the donation pile and I think my voice rose an octave.

“What’s this doing here?” I asked almost furious.

“It’s too small. It doesn’t fit her.” He says with a shrug.

“It wasn’t hers to begin with. It was Ukiah’s!”

“It was?”

“Yes!”

“We never used it with him.” He said, thinking on it.

“Well it was too small and we used the towel with the lion head on it instead.” I said. And there aren’t any concrete memories of him in that little bathrobe at all but it doesn’t stop that association from being there. I left the bathrobe in the donation pile. The drawers in which we have clothing, toys, and books that we associate entirely with him are pretty much full to the brim.  What was his, really his, the things that meant the most to him, the memory of him, we’ve kept. Other stuff, stuff that could have memories associated with both him and his sister we use with Loralei. The stuff that didn’t do either of those things we donated or got rid of.

 I think if I had to get rid of those things now I wouldn’t be able to. The further away he gets the more I want to surround myself with him, to clutch things that were at the best tangential to who he was. I get why some people hoard things now. I don’t get dead cat carcasses or letting your house be infested by millions of cockroaches because you don’t like taking out the trash. But having piles of stuff because there’s a memory attached and each of those memories is Important Damn it! That I can understand.

Now, that I’ve just honored what would’ve been his fourth birthday yesterday, I want to surround myself with piles of Ukiah. But I can’t just the same. It’s in a drawer for a reason, because if it was out all the time, I’d be paralyzed by it. Better to keep it locked away to only bring it out on special occasions. Actually I’m not sure what the right answer is. In situations like this, there really isn’t one.  You do what you need to, to put one foot in front of the other.

Which is why I’m so into promoting/telling people all about George Mark Children’s House. It fills this need inside me, this hole that was left by Ukiah’s passing. The more people I tell, the more I feel like I’m keeping him, his spirit alive.

You know my soapbox about this by now, so I’m not going to repeat it. Just keep thinking about George Mark Children’s House. Thank you.