Monday, April 30, 2012

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.

Friday, April 27, 2012

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.

Thank You for reading.

Tuesday, April 17, 2012

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-

Monday, April 16, 2012

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?”


“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.

Wednesday, April 04, 2012

Ukiah's Day

It snuck up on me again. It’s not as if I don’t know it’s there, that date, both the dates. Hell the whole Month of April looms large, and yet every year it feels like a sucker punch when it arrives. Leading up to the date, I’m aware of it, vaguely, as it sits there on a calendar mocking me. I’m more prepared than last year, at least I think so, in retrospect.

But it still comes as a nasty surprise, smacking us in the face, the day our son died, followed by the day that marked his birth ten days later. It seems like a cruel joke really, having them so close together, and then again it seems like a blessing. At least the sutures get torn clean off for a relatively manageable amount of time instead of  having them slowly ripped off multiple times a year.

It was still a bit of a shock to realize my husband would be out of town on the fifth. It wasn’t something either of us immediately picked up on when he scheduled the business trip, but it dawned on me that he’d be gone on that day and when I told him via a phone call, it was like all the air got sucked out of the room. Neither of us knew what to say, or could say anything for that matter more than “That sucks.”

I’ll be going to George Mark House tomorrow, as a way of Honoring Ukiah. I’ll visit his tile, find his rock at the remembrance fountain, walk the grounds and try to find some solace and some peace while there, holding my daughter and telling her I love her.

The ideal thing I’d like to have happen is to raise the equivalent of two days care at George Mark House on the two days on which we think of him the most (April 5th and 15th). But barring that, the thing that would make me happiest is if we could get George Mark House the recognition it deserved. I’d love for as many people as possible to find out about this great organization and share this incredible organization with as many friends as possible. Blog it, like them on face book, spread the word via twitter, I don’t care how it gets done, I’d just like to see it happen.

Imagine if we were able to get them a bunch of new friends on facebook, or if we could get #GMCH trending on twitter or if The George Mark website got inundated with hits that it almost crashed. Imagine if everyone circulated the New Way Home trailer the way we circulated the KONY2012 video a few months ago. Imagine the difference we could make for that organization and all the people that use and depend on it. That would be incredible, so incredible.