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. 

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.

Ukiah's Birthday and the Boston Marathon Bombing

Yesterday would've been Ukiah's Fifth Birthday.

Yesterday two bombs detonated near the finish line of Boston City Marathon.

Words cannot explain how inextricably sad I am over both events.

I spent the morning at George Mark House with my husband and my little girl, walking the grounds to see Ukiah's tile and his rock, two fitting tributes to our son that exist at George Mark House. We then went to the Oakland Zoo, a place we think Ukiah would've loved. We never got to take him there as much as we wanted to and so we take our sweet munchkin there every chance we get.

We went home to rest and regroup from the day and turned on the television only to be inundated with coverage from the Boston Marathon Bombing. I think it goes without saying that my heart goes out to all of those families that lost loved ones and all those injured in the blast. This was devastating and I'm sorry for your loss.

My heart also goes out to those who caused this chaos. This might be a controversial statement but whomever it is had to be in a very bad place to even consider this as a course of action for whatever reason. This is not the act of a sane, healthy happy person or people. I despise the act, but I can not despise the people because they have to be in a very bad place to feel the need to pull something like this off. I refuse to hate whoever did this because they had hate enough in their hearts already. Every body deserves love especially those who could pull off such hateful acts. They probably need it more. Hating them isn't the answer. Making them responsible for their actions is.

I'm so sad that my son's birthday now shares this date with a very heinous act of violence that needed not to have happened. I think I might still be so shell shocked from the events to be able to make much sense of it here in this space.

Trifextra Challenge

Apparently, my last post for the Trifecta challenge didn't link up correctly to their sit. Nobody got to read that piece, unfortunately, which is why I'm linking to it here. I was really proud of it regardless. Now, for the weekend they've posted an extra challenge: 

This weekend we're asking for exactly 33 of your own words inspired by the following quote from the book you could win in the WBN giveaway. Good luck!

“It's the possibility of having a dream come true that makes life interesting.” ― Paulo Coelho, Alchemist

 Here's my submission:

The tuft of red hair

Those blue eyes

Pure, innocent, fragile

His head lying on my chest

This dream can no longer be

Replaced by curls and curiousity

A different dream come true

 

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

I no longer write as much poetry as I use to, so I feel a little rusty in the format. Please bare with me. 

I think I should explain this one a  little. On April 5th, 2010, my son passed away. After he passed, I had this really intense dream about him. He was no longer surrounded by monitors and wires and I was just holding him and happy. I'd give anything to have the dream come true just one last time. Instead, a much different dream came true. I got to have my daughter and she has been thankfully healthy and happy. She's a curly haired spit fire and in her I find a joy I never knew could exist. I had to let go of one dream to feel the freedom to live another. 

My son's birthday is April 15th. He would've been five. I'd be honored if you wonderful Trifectans would check out George Mark House and at the very least become informed about what they do. Very few people in the United States understand the important of pediatric hospice and palliative care. I'd be honored if you made a donation in my son's honor, but honestly the more people that know about George Mark House and what they do, the better. 

Thanks for reading.  

His Button

I can still see the little mechanism that resided on the right side of his stomach, etched in my brain as it is. It was such a mundane apparatus but since it kept my son alive, to me it was his everything. It was a small little button but because it was his mouth, the way he received nutrients, the way, one of the ways he was kept alive, it will always stay with me.

That little device was a part of a way of our life. Plugging in the tubing into that little button was a muscle memory thing for me. I matched up the line on the tubing plug to the line on the feeding device, twisted slightly so it was locked and place and let the bottle drip until he was fed. Once it was done, I matched the lines, popped the tubing out, and put the little plastic cap back on the button. It served its purpose until the next time.

I miss the button in the same way I miss him because it was part of who he was. He had that little apparatus since he was two weeks old. He died with it in place. I don’t know for sure, but I think he was cremated with it in place. I’d give anything to have that back, the old routines, the feeding rituals, the mechanism and tubing, because it would mean he was back. I miss him terribly.

I have another mouth to feed, and she is fortunately free of all the devices and mechanisms that granted him life for so long. I wonder what I’ll tell her about her brother one day, about that time in our lives. I know I’ll definitely tell her about the little button in his stomach that ate for him and gave us the time we so desperately needed with him.

 

Trifecta’s editors asked for 33-333 words using MOUTH in its third definition:

3: something that resembles a mouth especially in affording entrance or exit: as
a : the place where a stream enters a larger body of water
b : the surface opening of an underground cavity
c : the opening of a container
d : an opening in the side of an organ flue pipe

This is what I came up with. For some reason, when I thought of mouth, I thought of the surrogate mouth my son had while he was alive.Check out the other writers signed up for this challenge!

Just Breathe, Part 2: The Panic Button

We hit the panic button Sunday night. Actually, I think we prematurely hit the panic button Sunday night. I heard my daughter through the monitor at around nine and she didn’t sound right. I ran up the flight of stairs and sure enough she was really stuffy and congested. I tried suctioning her out with a bulb and cursed the sky that I hadn’t hung on to my son’s old suction machine for the millionth time since her birth.

I tried settling her down, but she wasn’t having it. She coughed, and the cough became mangled and her breathing sped up and the cough got mangled again and my husband and I both went pale as we looked at each other and then back at her. We both started wracking our brains about what might be going on. We had gone back to the river again for the second time in about a week and had a lovely time. She played with the grass and I wondered if she had an allergic reaction. We fed her strawberry yogurt and despite all the research we’d done, we worried she might have an allergic reaction to that.

We called the nurse’s help line listed on the back of our insurance card and explained the situation. Their recommendation was to call 911. We weighed our options as she slowly righted herself and stopped crying. As we saw it, we had one of three options. We could wait it out at home, put her in the car and take her to the hospital, or call 911. A million thoughts rushed through each of our heads simultaneously. If we kept her home, we ran the risk that it would get worse and how horrible would we have felt if it did get worse and we hadn’t done anything? If we took her into the hospital in our car, we ran the risk that she could have an event her car seat the way Ukiah did at 7 months and that terrified us both. If we called 911 at least we had a safety net. We just didn’t know if she really needed it or not, but at a certain level we didn’t care.

So at 9:30 at night, we called 911. The fire department showed up first, followed by the ambulance. By that time, she was fine, smiling gamely at the firemen (until they touched her) and back in good spirits. But we hated risking it, we couldn’t bear if things got worse and we hadn’t done everything to prevent it. Everyone looked at us trying to convince us with their eyes that we didn't need to go in. But we couldn't trust their assurances, unspoken or otherwise. We couldn't trust our own daughter's airway to do what it was supposed to, obviously, so we weren't going to trust the assessments of a bunch of strange men in out house. So we made the ambulance ride the ten miles to the hospital. We spent another five hours in the hospital, listening to all manner of weirdoes and put-upon curmudgeons who apparently frequent the ER in the middle of the night. We tried not to get too irate at a drunk girl admitted to the ER by her parents when she woke up our daughter and then told our daughter to shut up (true story! ER = fun happy story time!)

We found out she had a cold. We spent a whole evening in the ER because of a cold. And you know what, I don’t regret it. I don’t care if I’m being over-protective or if you think I scare easily. After everything I’ve been through, I’ve earned my right to press the panic button when I think it is right, pre-maturely or not. Because I love my daughter just as fiercely as I did my son and I will fight tooth and nail to make sure she’s alright. I’ll do all manner of things, including singing children’s songs just loud enough to drown out drunken ramblings so that my daughter can get to sleep. I’ll do anything I can just to ensure she’s breathing, even if that includes dialing 911 when I probably didn’t need to.

But just to be safe, don’t sneeze in front of me if I have a phone in my hands. I have a real itchy trigger finger.