Memories of Karen

Not sure what brought up the memory, as long buried as it was. But the second I conjured it up into my consciousness, I suddenly felt very childlike and innocent. I’m not sure why memories of Karen and T evoke those feelings, why those memories and those emotions are tied so closely. Perhaps it’s because most of those memories were just perfect moments, that they best embodied what it meant to be a child and childlike. They are bliss, but they are also bittersweet.

I remember snippets, bits and pieces. There was that weekend, (or were there multiples?), where I stayed in their tiny mobile home trying not to get attacked by their tiny little Chihuahua Spud, which was difficult because he was so easily provoked. I can remember going to the flea market and picking out a bunny that I was so sure was going to be mine, but was told it would be Karen’s but I could play with it for as long as I was there. I remember purchasing this awesome wicker basket at a garage sale while Karen watched on. I can remember going to a mall with Karen and the determination I had in spending what little pocket money I had on a whoopee cushion. There was that day spent ice skating with her as my parents looked on. There was also the day she convinced me to get a new hairstyle (said hairstyle was a spiked mullet, and yet the memory still brings me happiness). Soon after those perfect, wonderful childlike thoughts, I immediately flash forward to their wedding, how beautiful it was, how that was a perfect end to a perfect summer, just whiling away my time at the beach, body surfing, finding shells and sand dollars and staying up until 5 am one morning crab fishing with my cousin. I remember flashes of the wedding and the rehearsal dinner and dancing and how perfect it was and how perfect Karen looked and how handsome T was.

I don’t remember the chronology, if Karen was pregnant with Clayton T or if they’d already lost him before the wedding, and because I don’t remember the timeline, I start wracking my brain to remember the chain of events as they happened, but I’m too besieged by sadness now, by the heartbreak they went through, which brings me to remembering my own heartbreak and loss. The story of their loss mirrored my own and it feels interwoven and connected in a way I dare not explain because I don’t want to risk reopening multiple wounds.

Suddenly I flash to that day my dad visited Karen in the hospital. She was on her deathbed and because I was too young at the time, I had to stay in visiting room. She died soon after that visit. I never got to directly say goodbye. She had a profound impact on so many aspects of my life and I never got to tell her that. I still think of her when I smell bitter apple or milk honey lotion. She’s so closely tied to who it is that I am and it always takes me by surprise. I love you Karen and thank you for shaping me in ways big and small.

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.

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 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.

Moving On

I told my therapist yesterday about my writing and how I sometimes bail or stop when it's too emotionally raw, or that I hate what I've written afterward, just despise the innards I've thrown onto the page. Perhaps its because I'm being too honest, perhaps I don't like admitting how tied to my emotions I am, I can't tell.

Unfortunately that's where I'm at right now. I'm emotionally raw and yet I'm writing. I'll probably hate this too, but I guess I just need a place for it. I've exhausted my phone-a-friend list, my husband is away on business and I don't know where else to go with all of this.

I just miss my son. I miss the weight of him, his smell, the way he breathed, the way he slept in his crib, the way he slept on me, all of his outfits, just all of it. It hurts so much right now. Emotionally, I'm there again, back at his service, at his viewing. It's like I'm forced to relive. The simplest things can bring me back to those emotions. I've been writing Thank You notes and the process of writing those notes forces me into the memories of his service, of being back at his viewing, of everyone I saw and all their concern and kind thought and it hurts all over again and I don't know where to go with all of it. I don't know how to turn it off either. I wish these emotions weren't so visible, so right at the surface, but they are despite myself. I see a pristine angel down the dairy aisle at my grocery store and it takes all my will and strength not to reach out and hug that baby and give his or her parents some sort of idea of how well they have it. And it takes every bit of my will and strength not to cry right afterward.

Sometimes I don't even have that.

And this week just feels like I'm being bombarded by tiny reminders of him. Some days I feel like I can compartmentalize, but today is not one of those days. Today I'm allowing myself to dwell and wallow. I wish I had some way to sum this all up, some big finish, but I don't. I'm just going to let this all be, emotional and raw as I had intended.

Sister Bernice's Rosary

In the two years that Ukiah was put on this earth, he's given me the opportunity to meet some truly interesting and amazing people. There are people that I consider good friends that I would have never met if it wasn't for Ukiah. One such person is Sister Bernice. She is the chaplain at Children's Hospital Oakland and she has known us since the very beginning of Ukiah's life. She was in Ukiah's life from his first day and was one of the first people I called the day after we lost Ukiah. She was kind enough to lead the service at Ukiah's celebration of life and she's just been the kindest soul we could have ever hoped to meet. She's been there at every hospital visit with kind words and gentle hugs and she has offered that she will continue to be there even now that Ukiah is gone. She's one of those special people and I'll never forget her.

She also reminds me of my grandmother. Maybe it's the hugs she gives, or her steadfast faith and strength amidst all the adversity she encounters and sees. It's hard for me to say for sure. It was partially because of my grandmother and partially because she had proven herself to be someone we could rely on but I decided to give her one of my rosaries. I ran it passed my mother first, and because she had met Sister Bernice, my mother heartily agreed that it was a good idea.

After the service I pulled Sister Bernice aside and told her the family's story. I told her about my grandmother and the impact she had on my life. I told her about my uncles and the tragedy we endured. I told her the important role my grandmother played in getting us to survive the tragedy. I told her about my Aunt Jan and the role the rosary played at the end of her life. I told her how I was attempting to make one for every member of my family. I told her all this and gave her the rosary. I told her that after everything, she was officially family. She held it tightly in her hands and told me she'd treasure it forever. She said it was ever more perfect that I'd given her the blue one. Blue was her favorite color after all.

Thanks to Ukiah, this wonderful woman came into my life, and because of Ukiah, I'll never forget her. She's family now and because she now has one of the rosaries, now she knows it.

My New Struggle

It's been three plus years since I've written in this blog. A lot has happened in that time. I had a child. I lost a child. Those two sentences don't really do the last three years justice, but in short that's exactly what happened. Soon after my last post, I found out a I was pregnant and my life no longer involved beads and blog posts and instead involved diapers and suction equipment and endless doctor visits and a dozen different specialists. That sentence doesn't even do it justice. The last two years of my life have been spent watching the most special of lives thrive, struggle, learn to thrive, only struggle again and again for two years. And again words fail.

And words will always fail me in the effort of describing the beautiful angel I had the pleasure of knowing and learning from in the past two years. He was the most incredible individual anyone I know has ever met and words haven't even been created to describe him, his beauty, his persistence, his perseverence, his spirit. And his spirit was incredibly strong, stronger than anyone I have ever met, dare I say even stronger than my grandmother's.

My mother has continually compared me to my grandmother. She's said time and again that she's proud the two strongest people she's ever had the pleasure of meeting are her mother and her daughter. Not feint praise in the least, and not something I feel I'm completely deserving of, at least not yet.

And there's a buried truth I don't think my mother understands, not fully. We're strong because they made us so. My grandmother dug down and found a faith, a strength she didn't have because the tragedy she was in asked it of her, her sons asked it of her, time and time again. My son asked it of me as well, with every set back, with every piece of bad news I was forced to find a new inner strength I didn't know I was capable of. And I'm asked to do it again in his absence. I don't feel capable of it right now, but I'll try because I think he is asking it of me once again.

I don't know what this blog will look like now, heck I don't know what my life will look like now, much less the blog. It will probably evolve as my grief evolves and changes. All I know is that I think I need this, now more than ever.