Grief

Tragedy struck yesterday. Tragedy didn’t strike me or anyone in my family directly, but it struck someone I love and care about very much, my best friend, who has been through lots of bad days and deserves a whole heck of a lot better. She lost her sister yesterday.

I don’t want to talk about that loss because I can’t really speak to it and it isn’t my story to tell anyway. But it got me thinking and reflecting on grief, my own grief and how I processed Ukiah’s loss, my best friend’s grief, and our reactions to grief. Right as my best friend was finding out she had lost her sister, I was heading up the stairs to feed my daughter. As the tragedy unfurled around us, I was at a loss for what to do, how to react. Should I have stopped breastfeeding, leaving a crying baby in my wake to comfort my friend, should I stay and wait the agonizing minutes out until I’m done to talk to her? I was in a shambles as to what to do. I anxiously waited out the minutes, dealing with my own grief and desperation while holding my daughter. Every minute that went by, hearing the sobs and cries of my friend’s voice, I felt worse and worse.

My husband, who was away on an errand, came back to the news. He came upstairs and said the smartest thing he could say all day. “We should pay for her airfare home.” Then he did the smartest thing he did all day, he marched back downstairs, got on his computer and arranged for her flight home. He did what I wasn’t in the right frame of mind of getting close to doing, meaning he did something while I still hadn’t done a darn thing but feed my daughter.

Being on the outside of someone’s grieving process is a strange thing. Through the years I’ve been on both sides, inside looking out, outside looking in, and sometimes in the middle of both. Everyone processes grief differently, and everyone processes another person’s grief just a differently. What did she need? Was I capable of doing the right things?

But then I have to remind myself that grief is not something you should over-think. She needed a friend, a sounding board, a shoulder to cry on and a body to hug and I was nothing if not those things. And I thought back to my own grief at my son’s loss and how my best friend, on top of her own grief, helped me handle mine. From my perspective, she did a whole lot more than that. In those dark times, she talked me off an emotional ledge or two (or twenty! Ha!) where I was having trouble processing my emotions. The least I could do, or try to do, was the same for her.

We spent the rest of the night talking. Random topics came up that passed the time, everything from childhood friends to my weird, but still strongly held belief that I had to watch out for people trying to give my daughter El Ojo strictly because my best friend had told me all about it so many years ago. I didn’t know if I was doing the right things, trying to fill the silence.

I still don’t know if I did or if I’m doing enough to help with my friend’s grief. I wonder if she asked herself that question when I lost my son. I guess that’s something you never know for sure.

Book Review: The Alchemist

I’m holding to my New Year’s resolution so far! And it isn’t even the New Year yet. I’m betting a thousand! Woot!

So I finally completed The Alchemist by Michael Scott and I have to say I really liked it, so much so that I purchased a digital of The Magician, the second book in the series and have started plowing through it. I’ve completed close to half of that book now too and I have to say the series has got me hook, line, and sinker.

A quick summation: The book is about two twins living in San Francisco that have a unique friendship with a couple that owns a bookshop in San Francisco and how that relationship is turned on its ear and the very nature of their lives changes when an old enemy of the couple walks back into their lives. While the story is centered around the twins, and how they may or may not be part of a prophecy put down in a book called The Codex, they are hardly the most interesting part. I’d go so far as to say the story even drags a bit when the narration is focused solely on them. Where the book, and so far the series as a whole, thrives is when it blends history and mythology seamlessly. Characters that history has marked as dead (Nicholas Flamel, Dr. John Dee) and alive and bitter enemies. Mythological creatures and places that we’re supposed to assume never existed are indeed real. And watching as all these things and places blur into each and separate is where the story really excels.

The other place in which it excels is the action. It is paced quite nicely. There are fight scenes that are quite visual, fierce characters to side with (I officially want to be Scathach, period. End stop.)

The only place where it slows is when the narration and focus comes back around to the twins, and even then it still speeds along quite nicely. When the story focuses on them, in becomes bogged down a tad in redundant emotion and narration. Things the twins are feeling are explained and re-explained a few times. Not that isn’t a part of what its like being a teenager, but for better or worse, that is where the story drags.

But really, it is only a minor quibble in a story that takes myths we thought we know and starts creating its own myth and mythology in the process, which any good book worth its weight in paper should do. Highly recommended. A-, B+.

Feeding The Baby

Now that I'm doing this writing thing a little more consistently, I wrote a small essay for Drunken Bee's Feeding the Baby tumblr project. Sarah B. Was nice enough to post it on the site. I thought that I'd add it here in complete form:

’ve been thinking about how to write this a thousand different ways a thousand different times. I think everybody who expressed their opinion about breastfeeding has reiterated my point about a thousand times, which is that breastfeeding, or not breastfeeding is an individual act, and it shouldn’t be viewed as a statement on feminism or motherhood or even as who we are as mothers. The act of breastfeeding is like a snowflake, no two experiences are ever going to be the same.

Which is why I find the act of judging someone or our own self-judgment on breastfeeding so upsetting. The story I’m about to tell isn’t completely about breastfeeding but about parenting on the whole. I currently have a three month old and the whole act of breastfeeding and parenting while still not completely painless, is not even as closely fraught with the anxiety, pain, frustration, and fear I felt with my son.

I don’t know where to begin when talking about my son, except to say that he is no longer with us. We lost him ten days before his second birthday a year and a half ago. I judged myself and felt judged by every freaking body on every decision I made and we made as a family up to and definitely including the decision to let him go. Nothing about his life and my life as his parent was quote unquote normal. And every decision felt laden with doubt, and the fact that he and his medical troubles seemed to dog us at every turn didn’t help.

And the fact that there were people in the medical profession who should know better JUDGING us didn’t help. I once had to almost literally restrain my husband from crawling over a conference table and smacking a Neurologist (who should've known better) from judging us about decisions we were making. Nobody, and I do mean NOBODY, should tell a parent, especially a parent of a special needs child that they know more about that child’s care than that parent! Because we are living in the trenches not that doctor, or nurse, or lactation consultant, or any other health care professional for crying out loud! If it is working for you, good. If it isn’t working for you, change what you’re doing tell you find what something that does and for God sake’s don’t beat yourself up about it or let any FREAKING body do the same. Because they don’t know what you’re going through, they haven’t walked a mile in your shoes and they don’t know the decisions you’re making on a daily basis until they have to make them for themselves, period, end stop.

Also, if you find that you are beating yourself up about breastfeeding or your parenting skills in general, take a deep breath and remind yourselves, that the decisions you are making could be worse, with much bigger ramifications.

 Every time I write about my son in any form, it always bubbles up a lot of emotions and memories, necessary but bittersweet. I'm glad I got to share this with the tumblr crowd.

New Year's resolutions

2011 came and went in a blink of an eye didn’t it? Here I am on the precipice of a new year, contemplating what has happened in the year that’s about to wrap, and contemplating what I’d like to accomplish in the new one. The biggest accomplishment of 2011 for me and mine? The birth of my daughter. We welcomed her with open hearts and open arms in September and my life hasn’t been the same since.

Her birth and her life up this point have filled both my husband and myself with bittersweet joy. We’re so blessed to have her in our lives, but there’s a tinge of sadness there, because we miss her brother so much and he’s still such a big part of our hearts and our lives.

But contemplating her new life, and Ukiah’s very short one have made me want to do more with mine, and as such, and looking out into this new year coming up, I’m considering those very clichéd but necessary prospects, resolutions. As of right now, I only have two.

1.       Read more.

      

      This year has reminded me how much I love to read, and how seldom I read anything of worth through to completion. The one book I did read through to completion this year was Jane Eyre. This was the first time I’d actually read it, and I have to say I loved it! And I’ve come to the realization that I need to read more and actually finish the books I’ve started to read. In the past five years, I’ve started Michael Chabon’s The Amazing Adventures of Kavalier and Clay twice and STILL have not finished it. I’m halfway through CJ Cherryh’s very awesome Down Below Station and still haven’t finished that either! I received an Amazon Kindle Fire as an early Christmas gift from my company and I’m currently in the middle of Micheal Scott’s The Alchemist but that’s only because I got halfway through Michael Scott’s The Necromancer before I realized that there were three books before it! So I obviously want to work my way through that series sometime this year. And that’s just the books I’m halfway in the middle of. I still have a list of books a mile wide that I haven’t even started yet.

      I bought Swamplandia at my favorite bookstore ever (Hi City Lights! I love you! I don’t tell you that enough!) because it was so highly recommended and have not started it. My mother gave me The Book Thief and Little Bee with the intention that I actually read them and I really, really, really want to! I also downloaded a bunch of free books on that Kindle Fire that I want to get through. Also, I won a hardcover version of Emma (Thanks again at @PenguinUSA!) that I want to plough through. I’ve forgotten how worthwhile the act of reading through a book is and I want to rekindle (Ha!) my love affair with books if at all possible. I know it’s a heady proposition, having a child that’s not even one yet and trying to fit in reading, but I have to try! And I want to document this new love affair here if at all possible. Which brings me to my next resolution:

2.       Write more.

As I wrote earlier this year, I’ve dubiously started writing again, which started with revising my completed novel and beginning the second novel in the series. I did revise the first one and began the process of trying to get it published, and I was rejected by my first literary agent! Woo! I’m still (slowly) trying to find a literary agent, or means of getting published, which hopefully will change this year as I’m going to try and enter this contest.

I don’t know how far I’ll get, if I get anywhere, but I have to try. So I’m going to try and write more. I’m going to try to write more pages of the second and third book in the series I have planned. I’m going to try and write more in this space (I’ve made that promise before, HA!) and my other blogs and I’m just going to try and write anything that comes to me. I’ve let too many good ideas pass through me unwritten and life is too short to let good ideas pass unnoticed.

Both of these are heady prospects given my full time job, my daughter, and my husband, but I want to make them work. Wish me luck!

Ukiah's Birthday

It feels like a dream, his birth. And yet I can remember everything in exacting detail. I won't bore you with those details but that was all to say its still very fresh, and at the same time very distant. Three years ago yesterday, we brought an incredible spirit into the world. A year ago on April 5th, we lost that incredible spirit.

We're still trying to sift through what those dates mean to us and how we're supposed to get through those days. On April 5th, we went to George Mark House, walked the gardens, had a few good cries, took solace at their fountains, found the rock with his name on it at one of those fountains, said hellos, hugged necks, went to our favorite pizza place and came home. Doesn't sound like allot but believe you me it was exhausting.

Yesterday, we didn't want to wallow, we wanted to celebrate. So we went to San Francisco. We went to a museum, had lunch, bought cream puffs at the most amazing place in the city (Dear Pacific Puffs on Union, do you deliver, because there is one pregnant lady in Livermore who wishes you did).

We celebrated his life and by extension our own. It was nice, not to fraught with tears.

I did have one moment though. On the way out of the museum, we saw a lady with a little girl in special wheel chair. I could tell just be looking that the little girl was obviously special needs. If I had to guess, I'd say she had cerebral palsy. I was at once hit with two conflicting emotions. One was elation. I love when parents of special needs kids take them out and give them experiences as if they were any other kid. It makes me happy, as if those parents and those kids are going on as if whatever diagnosis isn't a hinderence but something they can overcome.

At the same time, I was hit with fact that I wished that could've been Ukiah. I would've given the world to load him up a car and go to a museum, hit the beach, take in a movie with him. He deserved all the experiences of the world, and because of his health issues, he got to have very few. That's one of the many heartbreaks I've had to face unfortunately, one that I'm not likely to get over, at least not any time soon.

There is a bright spot to yesterday. My giving page raised over 800 dollars in a day. Its current total is at 2,319! The lovely and wonderful people through Tomato Nation's fundraiser did that. Which is totally awesome. Thank you all for making my day a little brighter, and for celebrating my son's legacy. I appreciate it.

Remember April 5th and April 15th

It somehow snuck up on us. We'd both been so busy to notice until now, but its here whether we wanted it to be or not. Tomorrow is the day we lost Ukiah. The realization hit us both like a punch in the gut. I don't even know what to do about it at this point.

April 15th will be here before we know it as well. His birthday. We're taking the day off to celebrate it and him. It you'd like to take a few moments to remember him yourself either tomorrow or on the 15th, please feel free.

As a way of remembering him tomorrow or on the 15th, please take a moment and donate a few bucks either to George Mark House or to my Donors Choose Giving Page that I set up in his honor.
I wish I had more to say on this matter, but I'm too wracked by emotions to say much more. Just please keep him in you heart this month and on these two days.

Little Gestures

I'm sometimes surprised at the effect a simple action can have. We know of one anology or another regarding this phenomenon. The whole 'a butterfly fluttering its wings can start an earthquake in China' trope we've heard a bunch of times, but nonetheless seems to be true. Every once in a while I decide to flutter my wings in a good way. Sometimes its giving twenty bucks to the homeless person in the grocery store parking lot, other times its giving all my spare change to the salvation army collectors during Christmas. And then of course, there's my fund raising for George Mark House.

But no where does my little fluttering have as big an impact as when I participate in the Tomato Nation Donors Choose fundraiser. Because its not just me, its thousands of people like me turning out for a cause, to help public schools and school teachers with much needed funding. Together, with all the others that donate, I get to say that I'm part of a movement that has helped raise hundreds of thousands of dollars for a good cause.

This year, the fundraiser is done a little differently. Before, Tomato Nation just listed a bunch of projects she wanted funded, with all the projects equallng the sum of money she wanted to raise for the whole month. I always found something on the list I liked and would donate 20 or 25 bucks or if I have the means to, close out a project. Last year, I donated 75$ to a special needs project and I couldn't have been more thrilled. The thank you notes alone had me coasting on happy thoughts for month. Just recently I completed a project to send a group of first graders to The Nutcracker. The thank you notes were adorable construction paper gingerbread men with lovely thank yous from the students written inside. I keep them in a special drawer, they are that important.

This year is a little different. Any of Sar's fans that wanted to, could create a giving page and attach it to her fund raising efforts. So I did. I picked only special needs projects because after everything that happened with my son, it seemed like the right thing to do. I created the giving page in his honor and named it for one of his best attributes, his heart.

(Here the full link, just in case: http://www.donorschoose.org/donors/viewChallenge.html?id=156315&max=25)

It was a small gesture. It cost me absolutely nothing, it was completely painless and hassle free and it was a way to honor my son. What could be better? Well I was about to find out.

I hadn't expected a lot from it to be honest. I had two teachers who asked if I'd add their projects. I did that and gave them a couple of bucks. I figured that's all it would raise, and I was fine with that. Then all of the sudden, a wonderful donor closed out three of the projects I selected, and it became part of my giving page total. Then my husband gave. And then a co-worker. It's not even April yet and this little giving page has raised over 200 bucks and closed out four projects. According to Donor's Choose 79 students have been reached, just by my having put a giving page together.

But the story gets better. Awhile back I did a survey for donor's choose and as a thank you, they gave me 5 $25 gift certificates to give to my friends. I sent one to my husband, to my mom, and a coworker and the other two I sent to the two teachers who e-mailed me with kind words for my giving page. One of the teachers recieved her certificate today and has already put it to her project and is almost funded! I am totally thrilled. All these little acts seem to be having a big impact and that's amazing.

I want you to keep one thing in mind, this fundraiser is set to start in April! It's not even April yet and my giving page has raised just close to 250 bucks. The entire total for all of the giving pages for the fundraiser is close to $5000!

Imagine what will happen when our wings really start fluttering.

The Big Step

I did something kind of momentous, at least it was for me. I sent out a sample of my book to a literary agent. It was the last, and relatively small step I've been meaning to do since I finished my book a year and a half ago. And yet it was huge.

I don't talk about the book much, here or anywhere else, mostly cause Chris has me so paranoid that it could be stolen at any moment that I'm scared for anybody to look at it. Its also partly because I'm so tied up in it that I don't want to write about it, afraid of sharing too much. But its something important to me, mostly because its the only piece of fiction work I've actually had the wherewithal to complete. I love writing creatively, but aside from the odd short story or rambling essay, I haven't had the true compunction to finish writing anything bigger than a few pages.

Then Ukiah came along and changed all that. I was so inspired by what he went through and so motivated by not just his story but his spirit, that I felt it necessary to write it all down and put is somewhere. It's a piece of work I like to call partly autobiographical, partly science fiction. It's not Ukiah's story, in case you're wondering, but he's in there. It's not all about his medical trials and tribulations, but they are in there too. It's about so much more than that. Like all great books, I believe it takes a new and irreverent look at the human experience, and I think that's really what writers want to do. We just want to provide a thread to the tapestry of life.

And so yesterday I knowingly and willfully gave a piece of that thread to a literary agent clear across the country. All my hopes and dreams for the future are in the fed-ex box headed East. Yesterday I tweeted "Just left my future in the hands if a kinko's guy. Bye-bye writing sample for lit agent! Do me proud!" then I promptly entered my prenatal yogo class, picked a card my teacher hands out for the day containing affirmations, and saw that I picked the Surrender card. Basically, the card stated, I need to surrender to the fates whatever happens now. Apt, for what I'd just done. There's not much else I can do but surrender. I did my best. I scoured and cleaned my writing sample to within an inch of its life. I rewrote and rewrote sections. I checked and double checked the query letter and now all I can do is wait.

I have no idea what tomorrow will bring or the day after that. Maybe the lit agent will read the first 50 pages, become intrigued and then ask for the rest. Maybe I'll get a form rejection letter saying better luck next time. Maybe my package will get lost in freaky plane accident a la The Castaway, and will be adrift out to sea for a decade until somebody brings it back. All I know is I have to try. I have to get someone to see the beauty in what I wrote, so the outside world will. Also, apparently, I have to surrender.

Scar Tissue

When I'm trying to describe what the aftermath of losing my son is like, I often use a lot of gritty morbid metaphors. I don't think anybody is fully going to understand the scope of losing a child unless they do it themselves. There are just so many things that thanks to the limits of the English language, I just will not ever be able to put into words correctly. But I try to paint a picture. I mean, I'm a writer, that's what I do.

I once had to describe to my mother what it was like living in my house without my son. The best analogy I could come up with is that immediately after having him and finally getting to bring him home. It's was as if a bomb of toys, and teeny socks, and pacifiers went off and the debris of that bomb was spread everywhere. Every room of the home, so many nooks and crannies of our cars were even filled with things for him. It was a bomb I didn't mind and actually kind of loved. There wasn't an aspect of our home that wasn't inundated with his presence. When he died, we quietly, diligently, but sadly went about the process of picking up the debris he left behind. Some things I was pretty good about parting with. I donated one of his two cribs without too much attachment, gave a bunch of his toys to his physical therapy department (we still have tons of stuff that was his). Somethings were too 'radioactive' to move or even touch. The footstool/storage bin in the living room is still filled to the brim with books and toys that were his most used. The crib in our room hasn't budged an inch since Chris first assembled it. The bin of toys sitting on Chris's nightstand is something we both refuse to move from its rightful spot. Neither of us have vocal said so, but its just something we know we won't move just the same. There are other things I feel I should get rid of, and am paralyzed to do so sometimes. I have this little box on the bathroom counter filled with hair doodads and makeup. Somehow, his little toothbrush is in it. I can't move it, hell I cry just trying to touch it. In the same box, there was a little filter belonging to one of the feeding systems we used to feed him via a port in his stomach. A few months ago, I found it, knew I should throw it out, couldn't, and started sobbing. That's all in effort to say that we are contaminated with Ukiah radioactivity that we will never willfully be rid of, and to me that's a good thing, wierdly.

The other metaphor I  use to better describe the state of things, my state of things, is that losing a child  is a lot like having been a cardiac bypass recipient. My father had one close to fifteen years ago, so I know of what I speak I guess. First of all, you come out the other side, and you're not really the same. Sure you do things in essence of feeling and acting normal and like you were before all this happened, but in truth, you're not really, and you're never going to be. You walk around with this deep scar on your chest that nobody knows about, or sees immediately.  But it's there, and you can always feel it, you're always aware of it.

My big issue at this stage (other than pregnancy hormones and nausea) is that I end up revealing that chest wound in really strange ways sometimes. Today, I had to get some blood drawn for my prenatal blood panel. No big deal, or so I thought. The whole morning I'm fine, its business as usual, no big deal. Then I get to the blue padded blood drawing chair and I start to get anxious. I hate needles, I hate watching my blood get drawn, I hate the weird rubber band thingies, I hate making fists. I can't stand any of it. And then suddenly. I was struck be this thought of the multiple times my son had his blood drawn, and the multiple attempts at threading an IV into his vein, and the one hospital stay where they put in an arterial IV as well and were deciding whether or not to sew in a PIC line and all the utter shit he went through and never had a say in and I lost it. I not only showed my scars to my phlebotomy technician, I felt as if I had reopened them and started bleeding on her. I hate being that visible about this, and yet, embarrassingly enough, I'm achingly visible. I sometimes feel I'm begging to show them to anyone who wants to see. Maybe I'll grow out of that impulse and things will get easier. Maybe those wounds will ache less and I'll feel more inclined to keep them under wraps. It's hard for me to say.

Piggy Banks for George Mark Update

Hi all! Sorry I haven't been around last week very much. Work was crazy and I had a health thing that knocked me on my butt for a few days and made me feel miserable, but that's not say there aren't updates to be made. I finished some more jewelry items that I'm donating to George Mark House for their own silent auction taking place on October 2nd. I'll be posting pictures of those items some time this week so you can peep some of what might be in store for you if you donate to George Mark House and win!

Also, I might have another item to put on the Prizing list that I'm finalizing. I think, I hope, I don't know.

The awesome and wonderful Sars has made a decision on the bracelet she wants and I'll be getting that out the door this week, so I'll be updating the prize list to exclude that bracelet.

And lastly, I just got a donation yesterday, which puts the total for this fundraiser at $200! I'm so happy about this because that's two hundred bucks George Mark House wouldn't have had otherwise, it's two hundred bucks that will go a long way to helping children just like my son and families just like mine. But there's still more to be made, more to do.  You guys have to raise 800 more bucks to get me to do the truffle shuffle, but I think we can do it, so let's get 'er done! Get those donations in and e-mail me. You've got sixteen more days until the end! Get those piggy banks filled and cashed in! Whatever you can do to help! I'd appreciate it.

Did you get a receipt but you haven't e-mailed me yet? E-mail me at tyliagardner @ hotmial (dot) com. I'll try and put a direct e-mail link into the George Mark Fundraiser panel on the right. If that doesn't work, let me know in the comments and I'll try and work something out.

Thanks you guys. Keep it going.

Machete Don't Text

I may or may not do a full review of Machete later but none of that matters cause Machete Don't Text. I freaking love that and it has now become the best reason I have for not texting ever. Machete Don't Text, that's why.  In fact I think it's quite a handy little saying. In the pantheon of short pithy responses I think it sits right next to "Look at the Big Brain on Brad."

Dear Think Geek;

I've never asked you for anything, and you have track record of just giving and giving anyway, but if you'd make a shirt that says Machete Don't Text I would love you forever. It would be right up there with your Rule #2: Always Double Tap and Hello my name is Inigo Montoya T-shirts as the shirts I'd most covet ever. Thank you.

With much love, They Bloody Munchkin

Movie Reviews: Whip it and Where the Wild Things are

We interrupt your regularly scheduled George Mark House Fundraising  news for the following diverting post:

I finally got to see two movies that I had been dying to see when they were in theatres, but thanks to Ukiah's health issues, I just couldn't. Needless to say, due to the wait, I had built both up in my mind, and I have to say both lived up to my expectations, but in totally different ways.

First up, Whip it! I have to say, Drew Barrymore's directorial debut was much better than expected. In fact, I think I'll probably have an emotional attachment with this movie like I did with Nick and Norah's Infinite Playlist, where I can't delete it off the DVR and it somehow fulfills a need in me while watching it. It's that note perfect.

The characters felt lived in and note perfect and its the type of movie that you just want to climb into and get lost. And this by no way takes anything away from Page or Harden, but this movie belonged to everyone else really. I wanted to get to know each  of the side characters more. From Kristin Wiig's, character bad-ass mom by day, bad-ass roller derby chick by night, to God forgive me, to  Daniel Stern's push-over sports-obsessed dad. Which O.k., I loved that character more than a little bit because when his character showed up to the Roller Derby rink in a felt cowboy hat, it more than reminded me of my own dad who had a period of about a decade of wearing a cowboy hat everywhere and I can't not love that. And since I'm up, Daniel Stern needs to be in more things more often. He can't just show up in things like City Slickers and Little Monsters and be a constant fixture in my adolescent head, then disappear behind his Wonder Years narration then disappear altogether in my psyche to just resurface in Whip It.  That seems not right somehow.

Ahem, back to the characters As always, Ari Graynor makes the most with what little she's given and she's AWESOME. Alia Shawkat's character was sweet, and adorable, not afraid to raise a little ruckus but real afraid when the ruckus gets out of control. Rosa Sparks, Smashlee Simpson, Eva Desctruction, and Julliette Lewis's character. God I love her. I love every part about her. And I really don't know why I'm rambling on like this because Joe R. put it better than I could. Everything he says is how I feel. Loved it.

Onto the second movie, which was Where the Wild Things Are. This movie and the sense of meloncholy I felt afterward have a story attached to them that I feel needs explaining. So again, this was another one I wasn't able to watch in the theaters because of Ukiah's delicate medical condition, so I eagerly awaited it on cable. But in the meantime, Chris had bought the book Where the Wild Things Are and I read it to Ukiah quite often, using voices and getting into my own sense of character. The book and those times reading it to him have a special place in my heart. And then, when we lost him, those wonderful things went away.

That's why, when this movie's sense of childlike melancholy mixed with my own nostalgic melancholy, it completely destroyed me. Visually is was a jewel to behold and it was filled with the kind of wonders that childhood imagination holds. The awesome tunnels and forts and piles were perfectly childlike.  And then the sadness, that meloncholy that pervaded all the characters at the end. I couldn't help it. I cried. It was sparse storytelling that sold so much. Whatever execution faults that have been leveled at the movie, it doesn't matter, because the heart was absolutely there. Thank you Jonze, for that.

Oh,  Karen O god bless you.

Prizing Update

I've finally added some new prizes to the list and hope to add a few more within the next week. A wonderful friend of Tomato Nation donated a pair of knitted, beaded fingerless gloves which I'm very excited about and I made some bracelets for 7 very lucky winners, that look like this:

See all the new additions here in the prizing page.

George Mark House fact of the day #3

So, first thing's first. The total is up to 150! Great News!

Also, new prizes will be eminent, but I'm still finalizing a couple odds and ends, so I'm not sure exactly when I'll post, only that it'll be within the next week.

Onto the fact of the day.

Fact #3:


Rather than overcrowded hospitals, George Mark House holds a maximum of eight children at a time. Each child receives and his or her family receives  a great deal of attention from from both the staff and the volunteers. Each room has its own individual theme, with beautiful murals in each depicting different scenes. My son stayed in the Railroad Crossing room that had two murals of beautiful rolling hills with a train meandering through the scene. The rooms and the personalized care provided a perfect place for my son to get better without being intrusive. They provide a high level of care without being intrusive.

A New Way Home Screening Date!

A New Way Home finally got that screening date it deserves! October 4th, at 7:00 pm, at the Grandlake Theatre in Oakland, CA! If you're in the Bay Area, its well worth your time! Mark your calenders!

George Mark House fact of the day #2

I have some quick updates before I get started. First, I added a total counter to the side panel so we can all keep up with the donation total. Keep it glued to the Piggy Banks for George Mark panel for total updates.

Also, I have a few more prizes to add to the prizes list in the next week, so keep a locked here for prizing information.

Thirdly, the current total just doubled from $25 to $50 this morning!!!! Yeah!!! Keep those donation reciepts coming!!! Thanks to everyone who has donated and spread the word on this little drive so far!!!!

O.k., so without further ado, here's your little fact of the day about George Mark House.

Fact of the Day #2:

George Mark House offers a wide range of services to the children who come into its doors. They have an in house hydrotherapy pool as well as a fully licensed on-call hydro-therapist. They also have a child life specialist that provides fun, games, arts and crafts not only to the children but to their siblings as well. They offer a wide range of fun events to all the occupants that come in the door. And I'm talking a wide range of fun events. Therapy dogs, fireman, bunnies, traveling zoos, proms. They have it all. They actually had a camel on their campus! A camel! They once brought a mini pony into my son's room. Where else can a sick patient get to pet a mini pony? Nowhere else that I know of. So let's get those doors back open!

George Mark House fact of the day #1

Today marks the official start of this little contest of mine. I just want to take a moment and thank everyone whose participated so far. Right now, the official total stands at $25. If you want to make me do the truffle shuffle and FILM it (I mean, I do the truffle shuffle a lot, there's never been videotape proof though), we're shooting for 1,000, so get those jars going and scrounge that loose change!

In the mean time, I thought I'd post little facts and tidbits about George Mark House that make it great, unique and center worth your money and energy.

Fact #1

George Mark House is the only palliative pediatric care house in the nation that helps children with life-limiting illnesses. There are upwards of 40 houses like George Mark House in the U.K, but there's only one in the United States and that's George Mark House. And right now it's doors are closed, so the US doesn't even have that. We have a responsibility to kids like my son to ensure that they do have something like this available. Let's think of the kids.

A New Way Home

Just in case you needed a little bit more incentive to donate to George Mark House, please check out this trailer to a documentary made at George Mark House following three families as they go through the process of having to lose a child.  It's a powerful, moving trailer that frankly hits a little close to home for me, but is well worth your time regardless.

There is a screening for the film being finalized for some time in September at the Grand Lake Theater in Oakland, CA. Keep tuned to the movie's website or to mine for a showtime as soon as it is finalized.

Ben Tuller, the filmmaker, was a volunteer at George Mark House as well as the documentarian for the film.  He took care of Ukiah once during his September stay and was saddened to hear of our loss. Check out his website and his facebook to send him some support for his project.

Piggy Banks On a Roll!!!

Wow! I mean wow. Today's my birthday and I just received the best birthday present in the shape of an awesome outpouring of support. This morning I got up and received a wonderful e-mail from Sars at Tomato Nation letting me know she'd posted my little fund-raising efforts on her website, which is wonderful news because we all know that Tomato Nation Readers have some of the biggest hearts out there, and already I've gotten some comments and e-mails, letting me know people have already contributed.

The first e-mail I received was from a woman in the UK saying she'd donated ten bucks and I cried! I literally cried. It's only 8:30 and I've already received a small kindness from  a woman halfway across the world. This is such great news I can't even begin to tell you.

On an administrative note, I've added links to my side panel so that you can keep up with Piggy Bank news easily.  I also added a Donate Now link to the side panel so you can go straight to George Mark's donation page and make a donation.

Also, I was asked what my son's name was so that a donation could be made in his honor, which is such a wonderful sentiment. His name was Ukiah James Gardner, and he was quite loved by all the staff at George Mark House.

Let me know if you guys have any other questions in the comments or e-mail me.

Thanks so much for the love you guys!

Piggy Bank Prizing and Administration Notes

There seems to be some really great momentum to this little contest of mine, I just want to outline some rules and regulations for the Contest. I’d like to officially start the contest on September 1st, lasting the whole month of September, but if you’ve already donated, don’t worry about it. Just send me the receipt of your donation to George Mark and that is your entry into the contest.

The contest will end at Midnight on September 30th. Make sure you’ve sent me your donations/receipts before that date to be entered into the contest. I’m more than willing to take donations myself and send them to George Mark but to make sure you get the tax exemption for the donation, you’re better off donating to George Mark itself. You can donate right on their website and they should provide an e-mail confirmation. Just send that to me via my e-mail address (tyliagardner at hotmail dot com). If you’re having trouble donating/getting a confirmation, let me know and I’ll see what I can’t work out.

I’ll select winners at random once the contest concludes and you’ll be notified by e-mail as to your prize. I’ll start e-mail notification on October 5th, so keep your eyes peeled to your e-mails.

If you’ve donated to George Mark but don’t want to be part of the contest itself, at least send me an e-mail and keep me informed of the donation. I’m keeping a tally of how much we raise. If we can raise $1,000 by the end of the month, I’ll reenact Chunk’s Monologue from the Goonies (You know the one I'm talking about!). $2,000 and I’ll add Chunk’s Truffle Shuffle to the list. If we go higher, I’ll add to that but it will be TBD. And if we are somehow able to earn 5,000, I’ll go for broke.

And again, if you don’t want to donate to George Mark itself, feel free to donate a prize. Any prize, or little token of your thoughtfulness that we can give out would be much appreciated. Knitted hats, quilts, the promise of baked goods, anything would be appreciated. I’ll take any kind of little prize or giveaway.
Much more important to me though is just getting the word out. Please post this on your blog, facebook page, twitter account, or any other social networking site you use. Please e-mail anyone you can think of. I want as many people as possible to know about George Mark House and the good it does for families who have children with life-limiting illnesses. A goal George Mark House has for itself is that they’d like to see several houses like it spring up in metropolitan areas around the country, but they can’t do that if they can’t open their doors and keep them open. So just tell people about George Mark House and the service it provides.
O.k., I’m off my soap box. Now, on with the important stuff.

Prizes

The prizes I have going on right now are:

A rosary using my grandmother’s beads made by me
A homemade necklace made to the winner’s liking
A homemade pair or earrings made to the winner’s liking
A homemade bracelet made to the winner’s liking
A piece of broken jewelry repaired – just send it to me and I’ll try my best and fix it.

One of seven U HOPE bracelets, made by me - The Bracelets all have leather string with letter beads spelling out U HOPE, with a unique blue bead between the U and HOPE. U was my son's first initial. The blue bead represents his beautiful blue eyes. HOPE is something we should all have in our lives. See pictures attached at end of post. I've attached eight pictures but one of those bad boys is earmarked for Sars, and as soon as she tells me which one she wants, I'll take it's picture off the website.

A batch of my mother’s wonderful homemade sugar cookies

One pair of lovely knitted and beaded fingerless gloves in red courtesy of Resa S. The gloves will be knitted similar to the ones pictured here: http://www.flickr.com/photos/goblinqueenie/3293652183/in/set-72157604047712581/ See also the tiny url: http://tinyurl.com/25fdd7v

That’s all for now, but there will be more to come. There might be a homemade baby quilt from my mother and a jar of my aunt Claire’s famous Nana Jam added to the prizing. And trust me, you’re going to want the Nana Jam. Made from the finest vine ripened wild raspberries my uncle Merle can pick and sweetened to perfection by my Aunt Clair, it is gold in a jar. I’ve seen blood feuds started over her Nana Jam. I’ve heard curses muttered under breaths and the worst stink eye administered to those lucky enough to receive a jar, so be on the lookout for that. I may also get some gift cards to sweeten the deal. Again, let me know if you want to add to the prizing or have anything to add. Keep it glued here for any contest or fundraising efforts. I hope this really gets some momentum going.

Without further ado, here's the picture of the bracelets I mentioned.

Piggy Banks for George Mark House

I have trouble going into my son’s nursery since his passing. It’s to be expected I know. There are just so many things in the room with which that I’m at a loss. I’m at a loss anyway, obviously. I could go on, but I won’t. One item in particular that had me at a loss was my son’s piggy bank. It is a stately piggy bank, in a deep midnight blue color that has given it a lot of gravitas. My mother was gung ho about filling it to the brim. My mother was gung ho regarding just about everything in my son’s life (as you do) but the piggy bank seemed to be of deep interest to my mother. She spent two summers filling it. It is quite hefty and determining what to do with it sent me reeling until I realized it had a purpose.

It needs to go to George Mark House. Anything and everything I could possibly give them needs to go to them but this in particular does. I think I’ve explained my love for George Mark House on at least an occasion or two. And if I haven’t made clear the love I’ve had for the remarkable unique soul that was my son on either of my blogs, you’re just not looking hard enough. But perhaps I haven’t made clear the connection between George Mark House and my son.

In September of 2009 my son got deathly sick. It wasn’t the first time and it wasn’t the last, but it was just as scary as any of them. We had a lengthy hospital stay to contend with. Again, not the first time, but it ended up being the last. We had some insanely difficult decisions to make that hospital stay, and one of them was whether to stay in the hospital or explore another option. That other option was George Mark House. We had some preconceived notions about George Mark House being a glorified senior center for kids, and some other completely preposterous notions. Then we took a tour of the place and realized it was exactly where he needed to be. He spent a month there and it was an absolutely perfect place for him to get better on his own terms but with a lovely and supportive staff helping him and us every step of the way.

One of the mottos George Mark House lives by is that once you’re there, you’re family, and as far as I’m concerned truer words were never spoken. They were a vast resource and a huge comfort. I could call their nurse’s station or their on-call doctor whenever I needed which was a security blanket I needed. Their nursing staff would call and check in on us to see if there was anything we needed on a routine basis. The emergency respite service they offered was a safety net that was nice to know was there. I didn’t have to tackle things alone if it got too difficult and that was so vastly helpful to me, just the thought of having something to lean on if I needed to.

And then, all the sudden it wasn’t there anymore. Two weeks before my son died, I received a call that they could no longer take patients and they had to close their doors for an undetermined amount of time. Most of the money they had to run their beautiful center was based off donations and grants wherever they could get it and the money had run out. They could no longer afford to run the center and take on any patients. Most medical programs, especially state-run medical programs, and insurers didn’t recognize the services they offered and therefore didn’t pay fora patient's care there. Our insurance did thankfully, but generally, with allot of the patients they took in that wasn't the case. George Mark House just didn’t have the financial structure in place to be able to keep its doors up.

We were heartbroken and bereft. The safety net had been pulled out from under our feet at the worst possible time. My son was battling a common cold that for him was anything but common. It would end up taking his life at that time and during his battle, we always had it in the back of our heads that we could turn to George Mark House when things took a turn for a worse. To find out we couldn’t was devastating.

Then the worst possible thing happened. We lost him. We were bereft again but now in the worst possible way. The type of heartache we suffered no parent should have to feel, and yet it happens far too often. We were suffering a great loss and million tiny losses all at once. We had a thousand decisions to make, none of which we wanted to make; what to do with his body, should we have a viewing, where to have his service, all of it. None of them were easy to make until it became a little be easier. I received a call from someone working at George Mark House. Even though their doors were closed to patients, they could still handle arrangements for funereal services if we wanted. I couldn’t think of a more fitting, beautiful place for everything to be held and a fitting way to honor his memory and who he was and we immediately said yes. We had both his viewing and celebration of life services there and they were both as beautiful and fitting tributes to our wonderful son as we could have ever asked. They bent over backwards to accommodate us and I’m eternally grateful.

Though their doors were closed, their hearts were still open. Even with their hands tied, they still opened their arms to embrace us. What they did for us was priceless. I’m just hoping to at partially return the favor, although I’m not sure that favor can ever fully be repaid.

That’s why I’m donating my son’s Piggy Bank to George Mark House. But its contents are probably just a drop in the bucket to what they really need to get going. They are planning on reopening by October 4th with a new financial structure in place to hopefully keep them afloat and their doors open. But they can probably use all the help they can get to ensure that their doors remain open once they do. That’s why I’m proposing Piggy Banks for George Mark House and here’s where I’m hoping the whole is greater than the sum of its parts. I think if we can start a grass roots movement over the internet and e-mails, we might really be able to make a difference.

How It Works

Most of us have a stash of lose change we’ve been keeping around that we plan on using for a rainy day or for a special occasion. You know that stash. Maybe it’s a jar you keep near the washer when you’re emptying out your pockets (that’s where ours is), maybe you have a swear jar you keep around to try and keep your dirty mouth clean, maybe your center console in your car is where pennies go to die. All I’m asking is that you keep adding to that change stach for the whole month of September and at the end, cash it out and send the proceeds to George Mark House. Don’t have a piggy bank, swear jar, center car console or some other erstwhile coin collecting receptacle? Start one and add to it little by little for the month of September. Cash it in and send it George Mark House. Too strapped to even do that? Living off the change you’re collecting your own self? Well think smaller, maybe just see what you can set aside for a week and cash that in. Any little thing you can do to ensure their doors can remain open will help. Don’t do any cash transactions anymore? Well think about doing it for a month, or a week in September, see how much change that generates and send it in. Think that’s way too much work and feel like just making a donation to their website, well do that too.

I’m thinking about doing a contest not unlike the one Sars holds every year in October for Donors Choose. Basically, send me your receipt for your donation and that’s your entry to the contest. I’ll give out prizes at the end of the month to people whose receipts I’ve selected randomly from the pile. I don’t have much to offer at the moment. Right now, off the top of my head one of those prizes are one the rosaries I’ve been making using my grandmother’s jewelry, but if you win it, that pretty much means you’re part of the family, which believe me you, is a much greater prize. I’d also be willing to throw in hand-crafting a piece of your own choosing. I’d be willing to make a necklace, earrings, bracelet, anklet, headdress (that might be stretching it) of your own choosing. You choose the colors and I’ll happily make it for you. Don’t feel like donating to George Mark but might feel like donating a prize? That works too. Email me at tyliagardner at hotmail dot com.

Don’t feel like doing any of that but are still mildly interested to try and help? Well that works too. Post a link to this on you blog, facebook page, myspace page, or twitter account and get the word out. Email family, friends, friends of friends, frenemies, friends or frenemies, old acquaintences, that strange guy at work who has the smelly cubicle and your convinced there’s a superfund site existing somewhere underneath some pile of papers that will rule the planet some day, anyone and everyone you can think of. Getting word out about this wonderful organization is just as important as giving it money because people don’t know it exists or don’t understand the importance of having a center where families with children who have life-limiting illnesses can go for support.

Need more incentive, to help? Well, if we as a collective group can raise a certain sum of money, I’ll be willing to do something silly and embarrassing and post said fruits of my labor on the internet. No, I won’t shave my head or dress like a tomato. I considering reenacting my favorite scenes from movies as reward. If we can raise$ 1,000 by the end of the month, I’ll reenact Chunk’s Monologue from the Goonies (You know the one I'm talking about!). $2,000 and I’ll add Chunk’s Truffle Shuffle to the list. If we go higher, I’ll add to that but it will be TBD. I didn’t have many readers of my regular blog and not posting for two years has scared off any fans I did have. I have one follower on my rosary blog so I’m not sure where this is all going to go, or if it will go anywhere, but I have to try and I’m hoping beyond all hope that you’ll try with me. Help me make a fool of myself on the internet. It’s for charity. It’s also for my son, for keeping his memory alive and I can’t think of anything more noble than that. Thank you.

Mother's Day Sucks

Can I be honest with everybody? Sometimes honesty can be politically incorrect, or unpopular, but I want to be honest. Because honestly, yesterday sucked. It sucked hard. Mother’s Day 2010 wasn’t the suckiest day I ever had. That honor goes to the day I lost my son. It probably doesn’t even make the top ten of suckiest days in recent memory. In order the other nine are; the day after I lost my son, that day in November he suffered his hypoxic event, the day we sat in an office full of pediatric pulmonary, neurological, and internal medicine specialists and they told us some very hard truths about Ukiah’s condition and I had to contain my husband to not crawl over a conference table and throttle a doctor and we had to make some very hard choices about Ukiah’s condition and we had to draw some very hard lines in the sand that we wouldn’t be willing to cross to save his life, the three very, very close calls we had in the Hospital NICU and PICU (tied for fifth), the first two days of his life in which I was stuck in a hospital twenty miles away from the hospital he was stuck in and I couldn’t see him at all (tied for eighth) and every day I spent in the hospital in which another family lost a child and I was witness to their heartbreak and experienced my own heartbreak for them(that’s four days in total, tied for tenth). So obviously, yesterday doesn’t make the list.

But Mother’s Day sucked nonetheless. To start with, I was antsy and bitter about the whole Mother’s Day enterprise days, neigh weeks prior to the day. Then I went for my usual Sunday Morning bagel run and was accosted by the guy at the register with a simple question; “Are you a mother?” It was a simple question but I didn’t know how to answer it. So I told him no. “Well if you were I was going to wish you Happy Mother’s Day.” I couldn’t process it. Then I called my mother and told her the story (after wishing her a Happy Mother’s Day) and she was a little shocked that I didn’t say yes to that simple question. And then I snapped and said something more mean-spirited than I intended.

“I’m not a mother. What am I mothering now? A box?” I looked over at the pile of toys sitting on the fireplace tile and searched the center of the pile for the little white sterile-looking plastic box that held my son’s remains as I said it. I can’t hold the box, not like I held him. I can’t squeeze the box and kiss it’s head and tell it how much I love it. I can’t feed the box, change its diaper, administer it’s medications, suction it, play with it, run it through its exercises and do all the things I did with Ukiah that made me his mother. I don’t have the routines that comprised our days, I don’t have several different specialists to talk to, phone calls to make, all the thousands of details that comprised the label of Mother. I don’t have any of that now and I feel I’m completely unworthy of the title no matter how much anyone and everyone tells me I’m still worthy of it.

I guess in my heart I’ll always be his mother but how can I mother him when’s he’s gone somewhere I can’t follow? It seems empty now in a way I can’t describe. Chris said I was more worthy of the title than a lot of mothers out there because I did more for him in two years than some mothers are capable of. He also said that I should answer the question with an unequivocal yes any time I’m every asked the question. I’m not sure I have the heart, the confidence required to utter such words to such a question. Maybe someday, but today, yesterday, aren’t, weren’t those days.

I feel like maybe I and women like me should have our own day. An Unmother’s day of sorts because we had that title and wore that title proudly and then it was stripped from us brutally, as were our responsibilities, as was the very honor of calling the beautiful souls our children, and now we don’t have those things. We don’t have the very individual that so wonderfully graced us with the title. Although I will always be completely honored to say that I was Ukiah’s mother. I will proudly say I knew one of the strongest, most unique, most beautiful souls ever in existence and I am proud that I got to call him my son. I just wish he was still here so I could continue calling him my son and I still had the wonderful title of being his mother.

An Open Letter to Alexandre Bilodeau

Dear Alexandre Bilodeau;

Thank you for winning your mogul event (that was partly up to the judging, but whatever, you still won). Thank you for being the first Canadian to do so on home turf in 30 + years so that there was an interesting angle to your story so that the media cover the even more heartwarming story of your relationship to your brother. Thanks for putting your brother's story out there and thrusting Cerebral Palsy into the forefront of national and international media, however fleetingly. Thanks for saying out loud for everyone to here that we have a privilege, a right, and a responsibility to live our lives to the fullest, to push ourselves to be our best because people like Frederic do that on a daily basis, overcoming time and again their disabilities and doing it with smiles on their faces and joy in their hearts. Thanks for saying out loud that anything is possible because the doctors told Frederic and your parents that he wouldn't walk past ten years of age, and yet here he is, at 28 years of age, still walking, proving everyone wrong. Thank you.

Cerebral Palsy, and other neurological disorders like it are so often swept under the rug, hidden away from view, in terms of people's awareness of them, the toll they on the families effected by the disorders, the challenges posed, but also the rewards and invaluable life lessons that can be learned from people effected with Cerebral Palsy and the like. Every once and a while a news story will come along, like the high school baseball player with a mild form of Cerebral Palsy who was pitching like a pro despite his disability and yet because of it. But then it gets hidden from view again, forgotten. And yet here are Alexandre and Frederic, in the forefront, putting real faces to the disorder.

But there are so many other faces to the disorder, so many more stories to tell and so much more that can be done, not only to raise awareness for Cerebral Palsy and other neurological disorders, but to help people in Frederic's position, to be more independent despite their neurological deficits.

One of my favorite causes to champion right now is George Mark House. George Mark House is the first Pediatric Palliative care facility of its kind in the USA that provides end of life, transition care, and respite care to families who have children with a wide range of special needs. Without going into to much detail, I spent a considerable chunk of time there with my son this past year and have come to champion it for its top notch care and the wonderful service it provides.

Because of George Mark House, I was able to meet some remarkable people in similar situations to Frederic's. Each one of them had a unique, beautiful personality that was a treasure to behold. And each one of them is a remarkable individual I am proud and honored to know. I wish I could tell their stories, maybe one day I'll be allowed to. I wish that everyone was aware of their unique conditions. Maybe one day everyone will and will champion their disorder, but also their uniqueness, their incredible resilience and beauty.

Until then, we have incredible stories like Alexandre's and Frederic's and for that I can only say thank you again. Thank you for telling it, and thank you to the world for listening, however fleetingly, what these two unique individuals had to say. Thank You.