Friday, April 07, 2017

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.  

Saturday, March 04, 2017

Book Review: The Hate U Give



Country roads are endless, or at least when you’re a little kid they feel that way. There are long stretches of road where I’m from where radio stations playing “decent” music wouldn’t reach (Read: In my father's word's "Not Country"). My dad’s old work truck didn’t have a tape deck in it so for some stretches we’d have to fill the time with talking. Sometimes it was silly, filled with bad dad jokes (“What do you think was that last thing that went through that grasshoppers mind when it hit out windshield?” “What?” “His legs.”), and thumb wars, and my bad harmonica playing. Other times it was filled with thought-provoking conversations that always made me feel a little bit smarter but more importantly, closer to my dad.

There’s a scene halfway into Angie Thomas’s The Hate U Give where Star is sitting in her dad’s truck, making a trek to a warehouse and filling the mundane ride with conversation. Her father, Maverick is talking to her about Tupac lyrics and asking her to break them down and throws one of her questions back at her with a patented dad move; “What do you think?”

Just like that I’m a 10 year-old, sitting in my dad’s work truck, barely able to see over the dashboard.
The prose in this book have the very same trans-formative powers that turned me into my 10 year-old self throughout. I’m not only transformed into my ten-year-old self though, I’m transformed into Star, angry at the person she thought was her best friend and not having the voice to say so. I’m Star’s mother Lisa, upset that she can’t protect all of the children in their neighborhood the way she tries to protects her own who also works damn hard to make sure her children are protected. I’m transformed into Maverick, trying to educate his children in the ways of the world by making them think for themselves.

And I’m also devastated. This book made me cry no less than six times, and not romantic, sweet tears. If anyone taking the 680 in the last week has witnessed a girl ugly crying in her car…. That was me and I’m not sorry.  

This books takes something very specific and very personal, Star navigating grief and injustice when her friend Khalil is murdered in front of her eyes by police, and makes it utterly universal and relatable. She makes you feel every one of Star’s feelings. Every bump on this rollercoaster is intentional and is meant to shake you to your very core.

But it’s not the highs and lows of this story I’m in love with. It’s the middles. It’s the family prayers and the friendship struggles. It’s the boyfriend drama (drama aside though - Chris might be the best literary boyfriend because of how real and imperfect and how often he gets it wrong but tries to make it right and is by Star's side no matter what. Love him. Go easy Mav.). It's trying to navigate the halls of your high school. It’s the embarrassing moments of hearing your parents talk about sex but realizing they are the most amazing people in your universe anyway.

But the thing that won’t soon leave me is it’s about Star’s journey to figure out who she really is amidst all grief, pain, and terror she’s experienced.

I was my eight year-old self again, realizing my uncle was dead and my other uncles, because of their Hemophilia and the AIDS crisis, were soon to join him. I was that scared child trying to figure out who I was through all of that death.


I know who I am now. As much as I miss my uncles (all six of them) and a few of my aunts, and one tiny baby cousin who didn’t get to experience life, I’m stronger for the journey we went on together as a family. And now? I’m much stronger and wiser for having travelled with Star on hers and I’m very grateful for it. 

Wednesday, September 21, 2016

Book Review: This is Where it Ends



I know these people. I know these people. I know these people.

This was the resonating thought I had while reading This is Where it Ends, the devastingly beautiful book by Marieke NijkampI know these people.

I don’t just mean that in the sense that writing makes you feel so ingrained in these characters lives that you feel you know them on an intimate level. It’s a true statement definitely. Nijkamp gives each character a livable and lived-in backstory and makes each character feel vibrant and alive in their own ways. But this isn’t what I mean.

Some of these characters feel plucked out of my own life, to a frustrating and heartbreaking degree, which makes this book that much more painful, and on some level, that much more important.

This is Where it Ends is a story that plucks us right in the middle of an impossible to imagine scenario that unfortunately happens all to often; a school shooting. All the events happen in the length and breadth of a school rampage being perpetrated by a former student of Opportunity High School, Tyler.

The story itself is told by a handful of students' first person accounts, but also through text messages, tweets, and blogs, but mainly focuses on the perspectives of Clare, Tomas, Autumn, and Sylvia. Each is entangled in Tyler’s life in their own fraught way. Clare is an ex-girlfriend, Tomas an enemy, Autumn a sister, and Sylvia the sister’s girlfriend and the enemy’s sister. Each has had a role to play antagonizing Tyler in varying degrees and being antagonized in return.   And it is made very clear very early on, each has a lot to lose and will lose much in a short amount of time.

And the thing that startled me the most was that there was an analog in my own life for just about every character. Clare’s brother Matthew, Tomas, Kevin (who barely spoke a word but had such a lived-in backstory I knew exactly who he was), the English Teacher, his daughter and her blog. 

(Sure, there were a few who I didn't have analogs for, Farid, and Sylvia, but they were so well created and such unique characters that I really wish I have versions of them in my life. Farid especially for reasons to deep and numerous to mention.) 

But the thing that made itself the most clear and also scared me the most is that I knew exactly who Autumn and Tyler were.  The relationship of a brother and sister surviving a traumatic and abusive household who were at once each other’s port in the storm and also each other’s worst enemy is a relationship I’ve witnessed up close and it is utterly heartbreaking.

The character of Tyler was especially upsetting because the analog of Tyler was someone I was once very close too but whose destructive qualities I was too familiar with and ultimately had to break ties.  The version of Tyler I knew never went on a rampage, thank God. But the capability was there.  The need for revenge, and always having something to prove was too close to the surface.

Sadly, the Tyler analog I knew died. And just as sad, there’s probably a lot of Tylers out there, lost and confused, and several Autumns and Clares and Tomas’s, just as lost and confused looking for some sort of anchor in the storm.

Which is why I find this story so important and worthwhile. The point of the whole book is that we are supposed to band together to be each other’s port in the storm instead of floating apart from one another, isolated and alone.  

It took a tragedy for the characters in this book to realize that. Sadly, it takes tragedy after tragedy for us to realize that. And even worse, sometimes we still don’t realize it.

But the power of this book is it gives us a close-up view of such a thing with the hopes that we will never have to live it ourselves, that maybe we can recognize the Tylers amongst us and accept them, love them, help them before it’s too late.

This is an incredible, heartbreaking story that is well-crafted, exquisitely told and has a message that is so important I’m going to be singing its praises for a long time. As I said on twitter, this book is so good I told my mom to read it and that might be the highest praise I can give a book. So please read it.

Tuesday, May 10, 2016

My super power

“But you’re not Ukiah’s mother anymore.” The funny things that come out of the mouths of babes. I know where this came from. My daughter was trying to wrap her head around the holiday that is mother’s day whilst also wrapping her head around the fact that she has a brother who isn’t here anymore.

“I’m always going to be his mother.” It was a knee-jerk response I wasn’t sure I was capable of. “Just because he’s an angel now doesn’t change the fact that I’m his mother.”

There was a confidence in the statement that surprised me. This confidence didn’t exist in me on my first mother’s day without him. I still remember half-yelling at my own mother “What am I mothering? A box?”

Now it’s different. Now I speak the truth. I’m still his mother. Death changes nothing about that.
Right after Ukiah died, my parents tried to convince me that I was more of a mother than most mothers could ever dream of being. The idea was that by being Ukiah’s mother, for however long it lasted, I somehow become a super-mom. Like being his mother gave me powers somehow. It’s a nice thought, one meant to soothe and bolster at the same time, but it’s not the truth.

I’m just a mom. I’m not super-hero mom. I’m prone to the same short tempers, the same gaps in judgement, the same misgivings as any other mother. Being his mother didn’t give me super-patience, or the ability to see through each and every decision and realize the outcomes.
The one super power it did bestow on me was enjoyment. When I have a moment with my daughter, by god I have a moment. It beautiful and perfect and every part of me knows it. I take my with it, relish in it.

That’s why Sunday was a good day, one of the best. Unlike many a mother’s day, it wasn’t met with a lot of fan fair or flourishes. We went to the grocery store and picked up stuff for a picnic. Then we loaded up the entire family, including the dog, and went to the river. We went to our favorite stretch of beach and had it all to ourselves. I watched the dog play fetch in the water for hours. I helped the daughter dig up sand and find shells. I smiled as she got a stick and pretended to fish. We wrote letters in the sand and drew pictures. She captured a ladybug and named it Bingo.

Every moment of that day, as simple as it was, was perfect. My heart sang and I listened to its melody, completely at peace. Being in the moment, seeing it for what it is and not taking it for granted, that’s my superpower. That’s a gift that is partially from Ukiah and partially from my daughter, and it is a gift I cherish.


p.s. I know I’m beating a dead horse about this, but the George Mark House #fundabed campaign is still going on and it needs your help. Not just donations, but they can use that too, but just getting the word out. Please help them fund two of their beds for a year. A five buck donation buys one meal for one child at the house. Just five bucks. But if you don’t have five bucks, please consider posting it on facebook, sending out a tweet. Anything. 

Thursday, April 28, 2016

Remembering Prince

Since Prince’s passing, I’ve been thinking a lot about him and basically consuming every obituary/think piece there has been. I don’t know why. Maybe it is to try and soak up all that there is in the void that his passing has left.

There is one thing about Prince that I’ve been finding out that I never knew or possible forgotten if I had ever found out about it; Prince had and lost a child. Every time this comes up, it feels like a footnote in everything I’ve read, taking a back seat to his musical genius or to his artistic legacy. It’s barely a blip on our collective radar screens.

I get why, or at least I think I get why. Nobody wants to dwell on what it means to be a parent that’s lost a child. And to be fair, it’s not all that he was. To the public he was all those other things first. But, and I’m guessing here, but it’s a guess built from my own experience, he would prefer to be thought of a father first, a grieving father second (maybe, but maybe not), and then all those other things happened to be pleasant white noise.

There’s a reason many an obit reads loving father, adoring husband, blah, blah, blah, because that’s usually the order of priority. The love we gave our kids is what should take the first prize.

Speaking as a mother who has also lost a child, the title of grieving parent is not something to be taken lightly. It’s something that I don’t want the collective we to pass over quickly, in obit or memorial form. No it’s not all I want to be known for. I'm a mother, a wife, a writer, a creative writer, a person deeply passionate about disability rights, beader, the list goes on. But I also don’t want it to be a footnote in my life when the final word is set to paper. Because Ukiah was certainly not a footnote in my life. He was so much more. He could be the central thesis, the theme on which the whole book hinges. That’s how much he shaped my life.

So I wonder what Prince would make of all this. It seems to me that this was all kept so close to the vest or else I would’ve been more aware of it. And anyone who has lost a child is certainly allowed to do whatever they want in the wake of such things. If Prince decided to keep that loss quiet, that was his choice and I respect it.

But when these things come to light posthumously, I wish such knowledge would be given the respect and width and breadth of appreciation such a thing is due. Prince was a father that lost deeply and lost greatly and among the many other things he was to each and all of us he was this thing too and he should be loved and respected deeper and more greatly because of this.


Prince, you’ve meant a lot to me throughout the years, but you mean so much more to me now knowing how deeply you have loved and how deeply you have lost. Rest in Peace and Rest in Power, but most importantly now you can rest with your child. 

Wednesday, April 06, 2016

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.

Tuesday, April 05, 2016

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.