My Secret Identity

Secret identities aren’t all they are cracked up to be. They are not what the movies make them out to be. I have a secret identity. I have had it for years now. I don’t have a fancy outfit or a cape to reveal my true identity. I just have a story. And it’s a doozy.

Carrying around this secret identity can get a bit weighty some days. I wish more people knew my secret. Being Clark Kent all the time with everyone when the S on my chest is screaming to be shown takes its toll. On the day that marks the occasion of my son’s death, my secret identity, being a bereaved mother, is particularly a heavy burden to bear.

That’s why I’m so thankful I got to go to George Mark yesterday and wear my secret identity proudly.

I was a hot mess at first. I went into the front office to sign in and as I tried to explain who I was and why I was there to the office administrator, I choked. Another employee who had known me for quite some time came up to me and let me cry, saying very little, giving me the space I needed to feel what I was feeling.

 Even when I think I have it together, memories of my son sneak up on me. But those memories are allowed to inundate me when I’m at George Mark. They are allowed to make me tongue-tied. My tears are welcome there.

I spent the whole day there. I hugged necks and talked to nurses. I told Kathy Hull that her Ted Talk was an absolute revelation. I was happy to learn that members of the team share our story when they walk past the tile wall when giving tours of the facility.

I told our story. I told our story. I told our story.

I let everyone see the secret identity, fancy outfit, cape, but most importantly scars and all.

Everyone knew about the hole in my chest where a child had once been. They knew the scars existed. It’s an utter relief to not have to hide the scars.  I spend so much time hiding them, diminishing them, that being able to let the scars see the light of day is an utter blessing.   

If you haven't yet, consider donating to the George Mark  #fundabed campaign. If you can't, please consider posting this on your social media feeds. Every little bit helps. Thank you.  

Weight

I can’t stop petting it. I keep stroking a leg or rubbing an ear, squeezing it closer into my body as I do. I know that a grown woman holding and patting a teddy bear must be pretty strange. But I don’t care. I know I could have placed the teddy bear on the floorboard of the car or sat it next to my daughter for the car ride home. I know having it on my lap makes little to no sense and yet I keep it there, petting it, hugging it tighter into my body as I do. Because this bear has suddenly become everything. Because this bear has given me just a little semblance of something I’ve missed horribly; Ukiah.

Since Ukiah’s passing, one thing that I missed terribly was the weight of him on my lap. I use to joke that I have phantom lap pains because my chest, the place where his head would lay as he slept so many nights on the couch, would ache for no reason. All I’ve wanted/needed was to put that familiar weight back on my lap again.

My daughter’s weight, although similar is a weight all her own. I’ve never compared the two. Nor has Loralei’s weight replaced Ukiah’s in my mind. They are both separate but equal. When Loralei sits in my lap, she’s not taking his place, she’s taking her own rightful place there. But that doesn’t mean I don’t miss the place he use to take. I still miss it terribly.

George Mark House was expecting us. I’d called earlier that day and told them we were coming. I’d spoken to one of my favorite people there at the house that morning. I wasn’t expecting that the metaphorical red carpet would be rolled out for our arrival but it certainly seemed that way. My daughter wasn’t feeling well, and everyone was bending over backwards to please her, because that’s how they are.

They offered her juice boxes and cookies and tried to do anything to make her smile. It didn’t work but that didn’t keep them from trying. Everyone was all warm smiles and even warmer hugs. This never surprises me. Ken Sommer, the director at George Mark even took time out of his busy schedule to come talk to me personally. He said something that I’ve heard over and over again at George Mark but that never ceases to surprise me when I’m there. “It’s your home.” It was said with a shrug, like it was the most obvious thing in the world.

And it is my home. There’s a sort of peace there, a comfort in looking around. A smile crosses my face when I spy one of the eight mural-painted patient rooms. When I’m there by myself, I walk the halls. It’s the same ritual I perform at my Aunt Clare’s house. I have to see all the places that have filled me with comfort and love.

Today I settle for seeing some of the people I love. There are the two familiar faces in the front office along with Ken’s. At the nurse's station There’s the nurse I’d spoken with earlier that day. And she's soon joined by one other. She’s the one who asked the question.

“Do you want a bear?” I’m a little confused at first and then she explains further that a mother who’d lost a child had gifted these bears to the house and they could hand them out to families who had also lost a child. I immediately get choked up at the idea, so I leave the decision up to my daughter. Even though she isn’t feeling well, she nods. We go get the bear.

They are called Comfort Cubs. Each one is a little different, some are squatter than others, each has a unique nose. Each one is weighted. This is not your normal stuffed bear. This is like a brick in a purse. If you carry it around, you are doing so with conviction. I sit the one my daughter had picked on my lap and I immediately begin to cry.

It’s the weight of it. It’s his weight. It’s back on my lap again and it makes me feel…. I’m not sure how it makes me feel. It makes me feel so many things at once. I hold this bear in my lap and it’s like he’s there with me again. I held the bear on one leg and my daughter on the other and it felt like I had them both and that was everything.

I try to put words to my feelings and emotions, but they just get jumbled in my throat. The nice woman just grabs a Kleenex box and puts it in front of me. I don’t have to say anything. Those things I’ve been leaving unsaid are still being heard by those around me. That in and of itself is powerful enough.

I find my husband by the fountain up on the hill by the chapel. He’s already found Ukiah’s rock. We sit up on the park bench outside the chapel and I hold the bear. My husband said quietly. “This is a good thing. You’ve been wanting something like this.” It gets quiet again. Things I should be saying aren’t being said and it really doesn’t matter if they will be.

On the way home, as I’m clutching the bear, I want to tell him how important this is, and at the same time I want to diminish its importance. I want to brush off the fact that I’m clutching on to this bear and patting it lovingly. But at the same time I want to sing the praises of having this bear in the first place. Instead, we make the way home in relative silence. 

This bear, this simple stuffed bear gave me a gift I never thought I’d get back, it gave me Ukiah’s weight. Whenever I need him to ground me again, to comfort me, he can take the form of this bear and I can feel him again. It is one of the things that destroyed me when I lost him and now I get to have it back.

Thank you to the mother who gifted those bears. Thank you to the wonderful person at George Mark House who wanted me to have one. Thank you to all the people at George Mark House who created this safe space so that I might have one. Just thank you.

Please help me in thanking this wonderful organization by donating to their #fundabed campaign today.

Thank you.

Things said, things not said

I had to answer the phone but I couldn’t keep my sobs in check.

“Hey,” came my husband’s voice over the line.

“Hi,” I said, through muffled sobs.

“What’s going on?” After almost two decades of togetherness there wasn’t much I could hide from him. He’d learned almost every nuance in my voice.

“I found the pee shirt.” What little I was trying to hold back came flooding out.

“Oh,” his voice was sympathetic and sad all at once, knowing exactly what I meant by the statement.

There are some items of Ukiah’s we hold as treasures, and some things we’ve just held. As I’ve mentioned before, the more time that has passed from his passing, the harder it is for me to get rid of anything related to him. But there are some things, like the invisible scars that are hiding and make themselves visible when I least expect it.

We’ve been staging the house recently because we are putting it on the market. This is in and of itself a bittersweet thing. The place is so full of memories we’ve made, memories we’ve made with him, memories that for better and for worse aren’t going to be in the new place, wherever that is.

I was doing a massive spring cleaning to stage the house and ran into things that I knew we still had but that I did not know we were hiding. Maybe my husband had been hiding them from me, or maybe I was hiding them from myself. I’m not sure. But I found them and they broke my heart all over again.

The Pee shirt was chief amongst those items. It was dubbed that because every time the hubbie wore it, Ukiah would inevitably soil it in some manner. The bodily fluids housed on the shirt are varied and numerous. Sorry to get gross on you, but it is the truth. The shirt itself is four-leaf clover green with a horse and rider screen-printed on it and some sparse wording that I don't remember. This shirt had seen war, not just of the bodily fluid variety. Swiss cheese ain’t got nothin’ on this shirt. It’s old and ratty and can’t be used for anything other than a rag and I will not get rid of it. You’ll have to pry it out of my cold dead hands. (Actually, I hope I get to go out that way, clutching something that reminds me of him, though probably not the pee shirt. I still have his stuffed animals. I’ll use one of those and one of the little munchkin’s while I’m at it. It would be nice to have the things I most treasure around me when I go out. And chocolate. Even if I’m not allowed to eat it, I want it close. But i'll save that for my will. Okay, digressing here, I’ll stop.).

I was clutching the pee shirt when he called. We both let the significance of it wash over us and were quiet for a while, neither of us knowing what to do with our feels. We switched tacks but we didn’t have to say much else. We knew he was there with us in that moment. We let him be. Sometimes the best things that are said are things that aren’t said at all.

Today is the anniversary of his passing, and there have already been several of those moments. Saying things and not saying things because not saying them is just as significant.

But right now I do have quite a few things to say. Mainly the big thing to say is that George Mark Children’s House, an organization near and dear to my heart and a charity that is well worth giving money to is having a fundraiser right now. Their current #fundabed  fundraiser is gaining traction right now on social media and on Indiegogo but it can still use all the help it can get.

The great thing about this fundraiser is you can select the exact amount, type of donation you want to give.  $5 buys a home-cooked meal. $25 buys a week’s worth of diapers and wipes. You can actually choose the type of impact you want your donation to make!

This is huge! It is so important you guys. And so worthy too.

Usually around this time of year, I make a plea regarding my Piggy Banks for Ukiah fundraiser, choosing to make this bittersweet time in our lives worth something by donating to George Mark House but this year I’ll be donating all my son’s piggy bank money (and if my daughter wants, some or all of her piggy bank money too) to the #fundabed campaign.

I would love to have enough in the piggie bank to buy an end of life suite. To be able to give a family the chance to use the same facilities my family and I were able to use when my son was there… to give that gift…. There are no words. None. I’m crying while writing this right now. I can’t even explain.

But with your help? Well, the sky’s the limit isn’t it?

I’m not sure if the Indiegogo fundraiser has the capabilities to let us pool our money for an item, but how great would it be to be able to give them enough to fund a day of care for a patient, or two. And real talk, as someone who as used their bereavement support services, if we could somehow band together to fund the bereavement support gift? I would be beyond the moon indebted to you to make this happen.

Right now, I don’t’ have much in the way of gifts or freebies to hand out to make your donation worth it, except what I’ve done in the past which is to lend my ever so humble blog to you for donating or spreading the word.

If you have any suggestions or ideas for pooling our funds/resources I’d love to hear it. 

Invisible scars

Some years it hurts worse than others. Some days, some moments even, it throbs. It never goes away, the invisible scar I wear, the burden I carry on my back. Maybe you can see it on my face, no matter how good I am at hiding it.  It will never go away.

I don't want it to. I am sometimes saddened that the burden has lessened, that the grief I feel isn't more. I grieve because there is less to grieve. I'm upset because the scar has healed just a little bit more.

I'm a lot antsier this year. I just want it to be over with. I don't want to think about April anymore. How Ukiah was born on April 15th and how he died on April 5th just shy of his second birthday.  I don't want to be with those thoughts any more and yet those are the only thoughts I want to be with.

For the first time in a long time I put his picture up at a place where I knew it would beckon the question from those that didn't know the story. It did. And even though I didn't really want to deal with it, deep down I did. I wanted people know him again. I'm not locking him away by any means, but for those who don't know the story, it's a hard topic to broach.

I had a son and then he passed away. It's a simple sentence in theory but in the real world it is hard as hell to say. I choke and sputter. Tears I promised myself wouldn't come pour out in a deluge. It's never not going to be difficult.

I'm okay with that. I mean I guess I'm okay with it. I'm not okay with him being gone. And even though the universe gave me an incredible daughter things still aren't square between me and the universe. Not by a long shot.

I don't know what April 5th or April 15th is going to bring my way this year. Joy, more grief, bittersweet tears? Probably, well most likely. But the how of it, the why of it, I won't know until it happens.

There is a way you can help. Well, there's a few different ways actually. First, have a slice of pizza, or a whole pie with family. Knowing that you are doing that on either day would make me smile. Second, consider spreading the good word about George Mark and if you can, make a donation. That would not only make me smile but it would bring tears of joy to my eyes and it would make my whole month brighter.

He's always with me. But knowing he's with you too, in your thoughts on those two days would mean a lot.

My Birthday Wish

Another Day, another year older. Oh what joys! Instead of waxing philosophic on another year, I'm just going to reblog the post I did for last year's birthday.

So my birthday's coming up in a week or so (August 27th) and I really don't have a lot of expectations. Dinner out with Fighting Nun, a good day out with  the whole family, my mom sending me homemade cookies, one or two small things, nothing big.  And that's the way I like it. A fuss being made over my birthday is old hat and I'm over it.

But there's something I'd like you all to do for my birthday if you've read my blog, or my tweets at all. I think you can probably guess what that is. George Mark House looms and will always loom large in my mind.  It's like an old friend who I forget about for big chunks of time but when I get back in touch, I fall right into my same rhythms with it.

I've done fundraisers and little things for them in the past with varying results and because I haven't had much time to organize myself, this one will be small and will probably have the same results. But I'd like to try and send them as much love (and money) as possible. I still have a small bevy of bracelets I made for the last fundraiser. On a first come first serve basis, I'll give those bracelets to the first five people who donate to George Mark House between now and my birthday. As always, if you've been saving up loose change for a rainy day, cash it in and send it. And if you do, let me know and I will parade you with as much gratitude as I have.

Just donate to George Mark House using their page, send me an email receipt ( tyliagardner @ hotmail (dot) com )  and where you'd like the bracelet sent to or or DM me on twitter with the information and boom, we're in business. Don't feel like donating, especially if you're not one of the first five, but you'd still like to donate?  No problem. Just tweet, or social media a link to George Mark House and you can have my blog for a full day. Want to promote your book , your blog, want to force my blog to post silly cat videos for a whole day? I will hand you the keys to castle if you give George Mark some love between now and my birthday. Seriously, any bit of love you can provide to George Mark house is enough and will garner you my love and and respect for the end of days. It's not only appreciated by me but George Mark House as well. Not enough people know what they do and how important they are to special needs and bereaved parents like myself.

They just recently had to stop their bereaved parent meetings, much to the chagrin of myself and parents like me. Tell them that their services and their support of my family and families like me is appreciated by throwing them a bone and some love, however small.

[Ed. Note: I've decided to extend my Birthday Challenge until the end of August, you have until 12:00AM August 31st to win loot or space on my blog!]

 I'm not doing a fundraiser this year. I 'd like to save that for Ukiah's birthday, but If you do chose to donate  a little bit of money to George Mark House between now and their annual gala and tell me about it, I still have some bracelets and some jewelry lying around that I'll gladly send you or I'll make you something special! But mostly I want their message and what they do spread out to the world. If you can,  tweet about it, put a link and their banner on your own blog, put it on tumblr. I don't care, just get the message out. I won't hand over the keys to my blog this time, but I will keep the karma rolling and tweet anything you want out to the world. On my birthday all I want is for George Mark House to shine and the message of what they do to reach as many people as possible. Thank you. 

Piggy Banks for George Mark House Special Thanks

Well, April's here. April 5th came. Then April 15th and I survived them both. Truth be told, with a company meeting in the middle of those days as well as a visit from my parents and my daughter being my daughter (Read: Busy, really, really, really, busy) I didn't have much time to dwell.

Keeping my mind on George Mark House and trying to help them to the best of my ability kept me going when the quiet moments threatened to make me fall apart. If you participated by tweeting, I thank you sincerely. Special thanks go to the ever amazing Eden Baylee, Steven Luna, and Laura Zera, who are worth their weight in gold.

I'm trying to complete my nav bar with special thanks to all those that helped. It meant so much to me and I sincerely need you to know that. I'll keep the special thanks section open until the end of the month, in appreciation for spreading the word for George Mark House and the good that they do.

In other news, I made Ukiah a piggy bank. Well, I painted a ceramic bank that I'll set aside especially for Ukiah. It's not a piggy bank as his last one was. It's a ducky and it is much small than his original bank, but it has his name on it and it has blue eyes, like Ukiah did. It also has some special touches his sister put on it just for him.

It will be about three or four more days until I can pick it up and see our handiwork but I think it's a good way to keep him close. 

Until the next time I do this, please keep Ukiah and his story with you and think of the good you've done in helping George Mark House stay afloat. Thank you.

April 15th 2014

She made cupcakes.

There was something about that act that surprised me. Not the act necessarily. I mean my mom will bake for any given reason. And she desperately wanted some bonding time with my daughter and cupcakes seemed like the way to do that.

It's just the day she picked to make them. April 15th, his birthday.

She had a valid reason. It was his birthday after all. Just because he wasn't here to enjoy it didn't mean it wasn't worth celebrating with cupcakes.

I'd never thought of it that way. Could never have thought of it that way before. There was too much heartache there to celebrate with freshly baked sweet foodstuffs. But that simple act made that day something else.

We took most of the cupcakes to George Mark House. I dropped them off at the Nurse's station, because I felt they'd get the most out of it and are the most deserving. It's their heart and devotion to the patients of George Mark house that keep the place going. I'm hoping my favorite nurse was working the PM shift last night and that he got to have a cupcake and it made him smile.

We also took a few other things to George Mark House. My mother made a quilt for them. She makes one per year for the house. Sometimes it gets auctioned off at their annual fall gala. Other times the house actually uses it. They have two apartments that families can live in while their child stays at George Mark House and once they put one of my mother's quilts in the apartment bedroom, a thought that still makes me smile.

We also dropped off a Safeway gift card of $100. That was the money from Ukiah's Piggy Bank plus a little extra. That's a $100 dollars of overhead they don't need to think about any more. Ukiah's piggy bank did that.

It's not much. I was once told it takes $700 per day per child to run George Mark House. If you round that up due to inflation and say it's $1000, it doesn't do hardly enough, but it is something. And I consider all the incredible tweets and awareness raising my friends online helped me do this year a lot of something. And I thank you deep down from the bottom of my heart.

Thanks to you, more people know about George Mark House and the good they do. Thanks to you, more people know about my son Ukiah and the legacy he's left in his stead. And that's huge! I'll be updating my list of supporters, all those of you who tweeted and retweeted soon to show my appreciation for what you did.

April 5th and 15th weren't easy days. They never are or are going to be, but thanks to you, and the good you did, the were better. So much better.

The cupcakes helped. Cupcakes help everything.

April 5th 2014

We tried not to think about it too much.

There was too much to do anyway. With a two year old who we're constantly keeping track of, there's always too much to do. There was grocery shopping to do, a birthday party to get ready for, laundry. There's always laundry.

It wasn't until we left the birthday party  and we wound our way to George Mark House that I let myself feel it. Four years ago on April 5th, our son died in our arms. It wasn't about to let me go so easily.

We went to the rock fountain where my daughter had a snack and we watched a bird bathe itself. We went to his tile, visited his rock at the staff fountain by the chapel. We wound our way around the grounds and went to the playground so our daughter could play.

Everything was very quiet, very peaceful. We didn't stay for too long. I signed us in at the nurse's station and back out again. I only saw one face that a I recognized and I'm not sure she recognized me.

My daughter didn't want to leave. She never wants to leave. She loves it there.

As we made our way out, she cried and moaned "Bro Bro Rock" "Bro Bro Place". I cried for a bit. I'm not sure why that triggered it, but it did. I don't always know what she understands about her brother. I think she knows she has a brother and he's not around. I think she knows that there are certain toys, cloths, blankets that are his, even though he isn't here any more. She gets a little mad when she sees toys in the hallway cabinet, that are kept and not played with. Everything should be played with after all.

Her 'Bro Bro shirt' is her favorite clothing item. It's got a small outline picture of him on it. She points to it and says Bro Bro. There's certain things she knows and understands about it. How much she grasps, I'm not sure.

Ukiah is just going to play a part in all of our lives in ways big and small for the rest of our lives, hers especially I think.

After George Mark House we went to Lanesplitter, partly as an homage to our son and partly because it's been years since I've had a slice of their pizza and I needed it, like NEEDED it. I'm going to quantifiably say this; Best thin slice, neigh, best slice of pizza pretty much anywhere. Yeah I said it.

(Dear Lanesplitters, please open a restaurant in the tri-valley. It doesn't have to be in Livermore, which would be nice, but it doesn't have to be here. Pleasanton, Dublin, San Ramon. I just want to be able to get to it in twenty minute drive, instead of an hour. An hour is almost too long to drive for pizza. I will continue to drive to Temescal for your pizza if I have to, but I NEED it closer. Please.)

It was bittersweet, being in the restaurant where we'd go many a day to decompress after many a hospital visit. It was our little retreat, a six block walk to 15'' Carnivore and a cold pint. It was the place where we could reflect and figure out a plan of attack. It was a place where we could be ourselves after a long day at the hospital.

It is now the place where our daughter dumped about half a canister of Parmesan on the floor (sorry). Old memories and new memories.

Once we got home, I didn't think much more about the day, what it meant, the grief. After all, there was too much to do.

(Please consider making a donation to George Mark house between now and April 15th. You'll be supporting a wonderful organization and getting some of handmade jewelry in the process. See my fundraising post for more information.)

Ukiah's Piggy Bank and a George Mark Fundraiser

So the piggy bank broke Friday. The Piggy Bank. The little piggy that went to the market and provided George Mark house with a day of care for one lucky child. Ukiah’s Piggy Bank.

I wasn’t in the room when it happened. My husband was doing what he usually does when being in a room for longer than fifteen minutes; he was rearranging it to make it perfect. He’d moved a furniture item and the shelf on which the piggy bank was perched fell and the piggy bank broke into a million ceramic pieces.

When I got upstairs to witness the scene, my heart broke into a million pieces along with it. I was absolutely bereft, although I didn’t show it. I shed a few stray tears, but I didn’t have time for much else. My daughter was in the room with my husband when it happened and we needed to wrangle her away from the debris.

We spent a good amount of time scooping up all the loose change, change I hadn’t cashed in since the last Piggy Banks for George Mark fundraiser. We had it to put all of it somewhere. I brought out two smallish tins, thinking it would be enough, but instead we ended up using a fairly big plastic bin. Close to five years of putting in all our spare change, two years of the little munchkin having to share change with her brother coin per coin netted a nice little collection.

April 5^th is almost around the corner. April 15^th too. Those two days and the eight days in the middle are always the roughest for me. I had planned a bunch of distractions to keep me occupied around those dates, so I don’t feel the lingering, the weight, the pain. But they’ve mostly fallen through. I was supposed to run a 5k on April 5^th, but that got cancelled. I’ve got a work trip smack in the middle of these dates, but I’m not sure it’ll be distracting enough. My parents are coming and will be here on the 15^th, but I’m not sure how that will go.

But I do know that on either or on both days I’ll be going to George Mark House and cashing in the nice little chunk of change we’d saved up in Ukiah's piggy bank. Maybe I’ll use a portion of it to buy Ukiah another piggy bank, so it’s always there, a fixture in our house and in our lives. He deserves that legacy.

I'll do what I did for my birthday. I still have a few more U Hope bracelets to give away. The first four people who donates to George Mark  and sends me an receipt  of their donation via email will receive a bracelet. Anybody else who donates and sends me a receipt will receive a special jewelry or bead gift (your choice). 

If you do donate, please tell them its in memory of Ukiah Gardner. They'll know exactly who you are talking about. They always do.

And if you can't donate, don't worry about it. Spread the word. Tweet about George Mark House (Use the #Supportgmch hashtag and if you want, tag @gmch in the tweet), Facebook it (Send me a link via twitter or email), or use any form of social media you want just to let people know George Mark House exists and the incredible work they do.  Do that and forward it to me and I'll give you free space on my blog. This means a blog post or as many blog posts as you want, space on my sidebar, whatever space you'd like to have.

Ukiah's never very far from my thoughts. Doing this means means he's in yours and that makes a world of difference to me.

Racing at Andrew's Run and Barely Surviving

Larry the Leftie reappeared as mysteriously as he had left a few months back. I looked down and there he was one day, looking at me forlornly. No one had answers for how he'd mysteriously rematerialized. I have several theories mind you. The first was that he had gotten kidnapped by Tuco, taken to a ramshackle hut in the middle of the desert to hang out with his scary uncle who uses a bell to communicate and have to make the tough trek back home, alone, thinking of several lies to cover his tracks (RIP Breaking Bad. I miss you). But I'm pretty sure that if my left running shoe was actually an underground Meth Kingpin, I'd know by now.

The second theory involves a peyote fueled vision quest, but where would an Adidas shoe even know where to get peyote? The third theory is that he just needed to take some time to find himself and maybe write the great American novel, and when that didn't work out, he decided to come back.

Whatever his reasons for disappearing, his returned was much appreciated, by me anyway. Ralphie is still a bit mad because Larry still won't tell him what happened and they've been really terse with each other for awhile.  I'll put them in couples counseling soon to resolve the issue.

But I need them to work in unison because I had another 5k to run. This time it was for Andrew's Run in Modesto CA. Andrews run was reason for wanting to run a 5k in the first place. The proceeds go directly to George Mark House so you know I was going to support it fully.

Thankfully, the race started at 9 am, which was nice. It takes about an hour to get there from where we live, and not a one of us, baby, grandpa, husband or wife, cherished leaving in the dark of the morning. Leaving out at daybreak made the transition a little smoother. The car ride was spent with me entertaining the baby while my husband argued with his father and with the GPS at differing intervals.

Even though we'd been at the park where the race was being held once before, we still got lost again which led to more arguing with the GPS which is always fun because my husband is arguing with an extremely proper British Lady who ISN'T THERE. I find it amusing every time it happens.

The race  set-up was a little ramshackle. I'm use to several tents and booths you can meander around while waiting for the race to begin, but this race didn't have that sort of set up at all. Some of the organized futzed with the race sign for twenty minutes. Race organizers were using the picnic tables and to be honest, everything looked scatter shot. But we got our bright green, very awesome long sleeve race shirts with the George Mark logo emblazoned on the front, so I was happy as a clam.

We waited at the start line, which was not your typical race line. I looked at fighting nun and said, where's the race clock? We looked around  and determined that a man in cap, and long somewhat disheveled hair was the time keeper. "Mr. Rosso is our timekeeper?" I said incredulously "But he can't even keep Lindsey Weir on the straight and narrow. We're doomed!"

We started the race somewhere in the middle of the pack and based on my pace, we were getting passed left and right. Fighting Nun was trying to get me to pick up the pace and I was just trying to keep it together. I don't know if my sleep deprivation was catching up with me, if the blerch had gained three pounds and hated me or what, but I wanted desperately not be doing what I was doing.

I tried looking at the scenery instead, which was actually very picturesque. Actually, the park and the path  in the park on which we were running would have to be considered my ideal running situation. Since I have started running, I have longed for a wooded, wonderfully shaded path with lots of greenery so I could avoid the sun while having something to look at. The park saw my shaded path with lots of greenery and raised me with a running river so I could listen to the water go by. It was perfect if I wasn't such a crabby mess.

I was always looking for the next marker, telling me how close I was to the finish line. I found it interesting that the markers were chalked onto the walk instead of signs on display. It just felt slapped together as a whole enterprise which is not in and of itself a bad thing, but just worth noting.

And then I had that moment again, where I find my champion, my inspiration to keep going. This time it was in the form of a man with cerebral palsy. He was older than me but only by a few years I'd reckon and his running form was hampered by something, but he kept pushing on. That lasted until I lost sight of him, then my shoe came untied (you'd think it was Larry, trying to make a clean break for it, once and for all, but in a clear sign of mutiny, it was Ralphie).

With about 3/4 of a mile to go I said "I'm Run DMCing it hun." It was all I could get out of my system.

"That's nice dear," my husband who clearly didn't understand what I meant said. "Keep running."

Finally it took a runner passing us to say "Do you know your shoe is untied?" for my husband to get the point.

"Your shoe is untied?"

"Yes, that's what I said a tenth of a mile ago. I"m Run DMCing it, adidas's with no lace's, Walk this Way? Duh."



"Whatever, just finish the race."




We finished the race about twenty seconds off my best time but we still got it done. Bottom line is it was a lovely race despite some foibles and I'll be happy to do it again, provided Larry doesn't disappear again and Ralphy doesn't try to jump ship mid-race. See you there next year.

Trifecta Challenge: Boo

I wanted to boo, hiss, seethe, make some motion that I hated what they were doing to me. But my body, as it always had, was holding me motionless. I wanted them to know what they were doing was wrong had been wrong my entire life and that this procedure they were talking of performing was the worst possible idea and not what I wanted at all. But the people ‘taking care of me’ as it had always been, were paying me no mind.

It’s not like I’m not use to people making decisions on my behalf, decisions I didn’t want made, decisions I can’t fight. It’s not like I’m not use to people underestimating my mind because my own body has trapped it, held it captive for years. Why should this place be any different?

Being held captive is one thing, but being tortured for needless reasons is an entirely different thing. I want, no I need someone to listen to me, to find a way to hear my mind when my body won’t speak.

Nurse Jane is coming. She’s sad. I know she doesn’t like what they are doing to me, what they are going to do to me. Maybe I have some time to convince her that what they will be doing to me tomorrow is wrong. Maybe there’s something I can do to make her listen.

What is that at the corner of my eyes ? It’s wet and running down my temples. Are those tears? Am I capable of tears? Will that be enough to convince her, them, all of them, that this is against my will?

All I can do is try and cry until somebody listens. 

***********************************************************************

The above short story is for this week's Trifecta challenge word boo:

boo 

1 (interjection)
used to express contempt or disapproval or to startle or frighten

2 (noun)
a sound that people make to show they do not like or approve of someone or something

3 (verb) to show dislike or disapproval of someone or something by shouting “Boo” slowly

 It was inspired by this story I read yesterday that broke my heart. If you think it's too long or it sounds too heartbreaking, I'll try and give you the cliff's notes. It's essentially about a girl with cerebral palsy whose parents deliberately infantalized and sterilized her so that her body would stay the same size as what they believe her brain function to be. The story is also about a person who lived through a similar experience and how heartbroken she is by this decision. It's an incredible but devastating article and I wrote this story above, partly because this thing wouldn't leave me and partly as a way for advocating disabled rights, no matter the age or brain capability. 

As some of you know, I had a son with special needs who passed away ten days before his second birthday and everyday I struggle with the decision we made to let him go because I don't know if that's what he really wanted. Despite his disabilities, he had a voice, an incredible, unique personality and a mind that wanted to fight to communicate and to work properly. I would've fought to my very last breathe to make sure he had that right. I have another blog called Ukiah's Heart, inspired by him, where I try to do just that for all the kids just like him by talking about issues revolving around children with special needs, parents with special needs, and bereaved parents. If this touched you at all, do your part by educating yourself at my other blog, and the other blogs I link to. Also, stop by George Mark House's website and educate yourself about the wonderful work they have done for families like mine and need help to continue to do. 

Thank you, in advance to all the Trifecta members who read this. You're all gems.

Birthday Wishes

via

So my birthday's coming up in a week or so (August 27th) and I really don't have a lot of expectations. Dinner out with Fighting Nun, a good day out with  the whole family, my mom sending me homemade cookies, one or two small things, nothing big.  And that's the way I like it. A fuss being made over my birthday is old hat and I'm over it.

But there's something I'd like you all to do for my birthday if you've read my blog, or my tweets at all. I think you can probably guess what that is. George Mark House looms and will always loom large in my mind.  It's like an old friend who I forget about for big chunks of time but when I get back in touch, I fall right into my same rhythms with it.

I've done fundraisers and little things for them in the past with varying results and because I haven't had much time to organize myself, this one will be small and will probably have the same results. But I'd like to try and send them as much love (and money) as possible. I still have a small bevy of bracelets I made for the last fundraiser. On a first come first serve basis, I'll give those bracelets to the first five people who donate to George Mark House between now and my birthday. As always, if you've been saving up loose change for a rainy day, cash it in and send it. And if you do, let me know and I will parade you with as much gratitude as I have.

Just donate to George Mark House using their page, send me an email receipt ( tyliagardner @ hotmail (dot) com )  and where you'd like the bracelet sent to or or DM me on twitter with the information and boom, we're in business. Don't feel like donating, especially if you're not one of the first five, but you'd still like to donate?  No problem. Just tweet, or social media a link to George Mark House and you can have my blog for a full day. Want to promote your book , your blog, want to force my blog to post silly cat videos for a whole day? I will hand you the keys to castle if you give George Mark some love between now and my birthday. Seriously, any bit of love you can provide to George Mark house is enough and will garner you my love and and respect for the end of days. It's not only appreciated by me but George Mark House as well. Not enough people know what they do and how important they are to special needs and bereaved parents like myself.

They just recently had to stop their bereaved parent meetings, much to the chagrin of myself and parents like me. Tell them that their services and their support of my family and families like me is appreciated by throwing them a bone and some love, however small.

[Ed. Note: I've decided to extend my Birthday Challenge until the end of August, you have until 12:00AM August 31st to win loot or space on my blog!]

The #WW Challenge

It's another Writer Wednesday today. I love #WW days because I get to tout writers/twitter friends I really like and who I think are deserving of a follow. It lets me express my love and respect for some truly unique writers/individuals. I enjoy that wholeheartedly.

But today, I thought I'd do something a little different. Recently I just found out that George Mark Children's Home has a twitter account (@gmch, not to be confused with @GMHC, and AIDS non-profit I also follow, and definitely not to be confused with @GMCLA, the Gay Mens' Chorus of LA who I also follow.) Obviously I think this is awesome and I followed right away. I don't have to tell you guys about George Mark House and the good they are doing and have done not just for my family but other special needs families do I?

We have a real opportunity to get the word out about George Mark House, to spread their twitter account and their message to the masses. So here's my proposal. Every #WW from now to the foreseeable future, the first writer or anyone really who sends out a tweet about George Mark House and forwards it to me gets to run my blog for the day.

Want to tell my (limited) readership about your new book for the day? Great! Want to Hijack my blog to post a billion kitten videos? No problem! Want to get all political or religious? Well, I'd prefer it if you didn't because I try not to do either of those here (although occassionally I do) but if its within reason, I guess I'll allow it. Here's your opportunity to use my blog for free to do whatever you want and say what you want for a day. Just spread the word about @GMCH on twitter or better yet, give George Mark a shout out on your blog and you've got this space all to yourself.

Any questions, concerns, issues? Email me at tyliagardner @ hotmail . com. Now lets do this thing!

My Mother's Day Challenge

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

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

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

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

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

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

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

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

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

Ukiah's Birthday

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

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

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

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

“It was?”

“Yes!”

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

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

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

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

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

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