Tuesday, September 14, 2010

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.

Tuesday, September 07, 2010

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

Monday, September 06, 2010

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.

Saturday, September 04, 2010

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.

Friday, September 03, 2010

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.

Thursday, September 02, 2010

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!

Wednesday, September 01, 2010

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.

Tuesday, August 31, 2010

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.

Friday, August 27, 2010

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!

Wednesday, August 25, 2010

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.


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.

Friday, August 20, 2010

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.

Monday, May 10, 2010

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.

Tuesday, February 16, 2010

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.