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.)

Trifecta Challenge: Ecstasy

She’s my salvation, my religion, my temple. I bow before her alter every morning as I pick her up from her crib and kneel before that alter as I put her to sleep. I listen to her sermon of gibberish and undecipherable words and try to heed her commands as if they are gospel. I watch her every move and in that movement and odd rhythm, I achieve an ecstasy of contentment and joy. I watch her dance, hear her laugh, see her smile and I'm at peace.

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This week's trifecta challenge was Ecstasy:

ECSTASY (noun)

1

a : a state of being beyond reason and self-control

b archaic : swoon

2

: a state of overwhelming emotion; especially : rapturous delight

3

: trance; especially : a mystic or prophetic trance

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Things I learned while writing this:

• I can not spell Ecstasy on my own. I keep thinking an X should be involved. I don't know why.
• I can write something without having to edit it a million times to get it under that 333 word limit! Huzzah!
• Typing with a cut on your index finger is hard work!

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

 

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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!

The Pancake Conversation Redux

Bloody Munchkin: So, now when he goes to daycare, he tries to hide the pancake however he can. I was told he usually stuffs it down his pants.
Fighting Nun: He stuffs the pancake down his pants?
Bloody Munchkin: I don't know if he's really hiding it or trying to get our daughter to do something else by stuffing the pancake there. Either way, he's still sticking pancakes down his pants.

The pancake conversation has taken a weird turn people, a very weird turn.

A Conversation from Last Night

Bloody Munchkin: We kept getting him to try and say her name but he kept saying something about pancakes. Turns out, the first day the little munchkin met him, she up and stole the pancake he was eating right out of his hand. He's still mad about it.

Fighting Nun: That kid better prepare himself for a lifetime of that because it only gets worse there on out. 

Bloody Munchkin: Probably. Anyhoo, your daughter's nickname is now pancakes.

Worried for My Daughter's Future

So this morning, I watched this movie called Beware the Gonzo. I had started it a few weeks ago, but finally got around to watching the rest so I could clear it off my DVR. The movie is mostly forgettable, but you know me and my high school movies. I am compelled to watch them at least once. I wish it were better. I mean, Campbell Scott and Amy Sedaris are both in it and yet are given hardly anything to do. Ezra Miller is Ezra Miller playing Ezra Miller but admirably. Jesse McCartney, Ugh.

But I don't want to review the movie, not really. There's a scene with Zoe Kravitz that struck a nerve with me. It's basically a cell-phone video of her character right after she had been essentially gang raped. She's humiliated and the humiliation is caught on video. I shuddered, not because of it being graphic, but because I was holding my daughter at that moment and I thought about her and how utterly I am worried that something like that could happen to her. It's terrifying.

Also terrifying is the idea that my daughter could end up like Amanda Todd:



If you haven't seen it, watch it. The ever amazing warrior/writer Lorna Suzuki tweeted it last week and it hasn't stopped shattering my world. For those faint of heart, I'll recap. The video features Amanda Todd, some time before she committed suicide, explaining in detail, one scrap of paper at a time the type of torture she's had to endure at the hands of bullies. It ranged from cyber-bullying to flat out physical abuse and beatings by her bullies. It was something she felt she couldn't face any longer and that's utterly heartbreaking.

What's more heartbreaking is how persistent bullying can be at this day and age. Yes, I was bullied and absolutely hated junior high and high school, but then I got to go home and at least I was in a safe environment and could compartmentalize. Now, thanks to social media, that bullying can follow the kids home and can continue to follow them through their years. Now some drunken mistake could be posted on the internet and never be taken down, or somebody starts a hate blog about another kid, or some text involving something sexually explicit supposed to stay between two people doesn't and it ends up haunting and torturing these kids for a long long time. Kids today have a lot more to deal with, especially on this level than I ever did. And who knows what my daughter is going to face when she reaches puberty. She could come out relatively unscathed, or she could have a slight lapse in judgement and there could be a video like the one in the movie, or worse, she could end up like Amanda.

In the same movie I mentioned at the end Zoe's character says that the she's tired of being a victim and she's not going to let that video the fact that it's out in the world control her. That was a very powerful statement and one I'm glad she made. But the very next scene undercuts the entire sentiment. The scene featured a character named disgustingly enough Horny Rob Becker. He's showing a friend (Ezra's character) a video he uploaded to the internet of him having a three way that he said "was [him] communicating with god." It's totally barf inducing and it's totally the thing I thought the movie was partially standing against. In putting that video out to the world, he exploited the other girls in the video. This message that maybe, just maybe we shouldn't be video taping this sort of thing and exploiting and humiliating these girls was completely thrown out the door in that one scene.

We need to be talking about this more, as a society. We need to be telling girls that people will do this sort of thing and have no guilt about it whatsoever. We need to be talking about how prevalent bullying and humiliation have become with teenagers and come up with constructive methods for dealing with it.

As for me, all I can do is try to arm my daughter appropriately when the time comes and tell her that not everyone has her best interests at heart. I guess I can always buy her The Gift of Fear and force her to read it. But unfortunately this is something I have to prepare myself and her for. I hope for a brighter future, especially in regarding to this, but I'm preparing for a lot messier one.

I'm baaaacccck

I just looked and the last blog post I did was on 9/5. September officially kicked my ass ya'll. I mean, up one side and down the other kind of an ass kicking. On twitter, I just did a quick recall of events for the month, and it was freaking nuts! The hubbie had two business trips out of state, for starters, and the baby had a bladder infection during one of those trips, making a already frazzled mother even more frazzled. On top of that, the baby's birthday was smack dab in the middle of the month, and all the out of town family came in  for the occasion making about a week and a half of the month a complete zoo. There were family gatherings and barbeques and swim classes, and parties upon parties and five foot teddy bears that filled up a section of the living room, and it was just plain nuts! I always had something to do.

Finally, things started settling down. I started getting things off my to-do list (including long over-due notes to my writing critique partner. Hey Jason! Sorry), getting work done, and things felt momentarily normal. We started running again (I can almost run 3 miles now without dying! I know, I'm as surprised as you are! I might actually be able to do that 5k I signed up for without endangering a bunch of people! Should be fun!).

And then the baby got sick, which meant I got sick soon after, which meant my husband got sick soon after that, which means all three of us were miserable and cranky for the better part of this weekend. The bloody munchkin household has just not been able to catch a break.  I'm fully exhausted. I'd do a bunch of really desperate things right now just for a half-hour nap. I'm serious. I might actually consider committing crimes just for some R&R and the off-chance that my sinuses will stop throbbing like they are playing out a baseline to a Skrillex song.

But there's a bunch of things I want to say this week, so I'll try to get them off my chest, despite this stupid cold. Until then, somebody get me a nap! My whole kingdom for a nap!

These Days are Just Packed

This Calvin and Hobbes book pretty much sums up my weekends in a nutshell. I use to think this was such a childlike conceit, the idea of doing so much while doing nothing much really. I just didn't think this was something you could embody as an adult. But now that we have the little munchkin, my stance on this thought has done a 180.

The days, they are REALLY packed. To the gills even. Our days may be an 18 piece matching Louis Vitton set is how stuffed they really are. There's breakfast to fix for the little one and laundry to sort and the munchkin to wrangle and breakfast to grab for the bigger ones and an outing to plan and a diaper bag to pack/check and a munchkin to continue to wrangle and a stroller to wrangle into the car and that zoo is not going to walk itself and and a bottle to mix and elephants to see and otters OMG Otters and then there's a rice and beans to feed the baby and a burrito for my mouth and other errands and strolling and walking and driving and home and laundry and 'Hey, why don't pop over to the pool with the baby?' and splashing and swimming and dinner and bottle and bed and then TV for us. And that was just Saturday.

There are moments of utter and pure bliss in the busy that make the busy worth it. Take the zoo. The Oakland Zoo, bless it, can be a bit of a slog at times. It's built on a hill, with a lot of slopes. If you park your car at the top of the hill, that means, you'll walk down through the zoo but it also means you have to walk up that slope to get back to your car. Thank goodness we finally learned something this trip and parked on the lower level, which means the slog back to the car is downhill.  But my point is there's a lot of walking, which means, the munchkin whose chilling in the stroller entertains herself with an endless string of consonant and vowel sounds with an occasional mouth fart (ppppphhhffffttttthhh) added in for good effect and a couple of well timed EEEEEEEEs just to break up the monotony. But then we'll get to an animal exhibit, and if she can actually see them, it's incredible. She's a fury of sounds one second and then she gets really quiet and watchful. She particularly loved the bears and the giraffes. The camels also seemed to have her rapt attention. I just love to watch her in these moments. She's so studious and serious and then the next second, she's all bubbly smiles. It is pure glee and it's what I live for, maybe even vicariously a little bit. To peek inside those moments of joy from her perspective is a thing of beauty.

Going to the pool is the same way. You get her close to the water and she lights up like a Christmas tree. She splashes and giggles and plays and splashes and kicks and attempts to swim as we walk her up and down the pool. She's the life of that pool when she's there. There's a neighbor kid who loves to play with her and splashes her hands and she splashes back and they both laugh and giggle and it is pure mirth. No matter how tiring the build up is, those moments are what make it, all of it, totally worth it. 

My days are just packed. And I wouldn't have it any other way.

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.

Just Breathe

"You got up too much last night."
"I know. I just didn't want her to get into a bind."
"You don't give her enough time to work it out for herself."
And here's where I admit the truth. "I know it's just half the time I'm just checking to make sure she's still breathing."
"I know."

And then the floodgates opened up and I let out several gasping sobs. I was near uncontrollable for a good minute or two. My husband let me cry and my daughter felt the tears trickle into her hands.

I still, 9 months in, can't just let things be. Certain things I can, I've made my peace with. But with the delicate tightrope act that is breathing, there's just times I can't trust that it will happen as it should 100% of the time, because it never did before.

For the first three months of my daughter's life, it took every inch of self-discipline not to march into my pediatrician's office and demand, DEMAND that they find some medical condition that necessitated we have a pulse-ox machine at home. I didn't know how to sleep without glancing at a machine to tell me my child's oxygen saturation. I would stay awake just listening for one loud sigh that proved she was still breathing so I didn't have to get up and check.

Lately, she's taken to rolling onto her stomach to sleep. Despite all my attempts to roll her onto her back or side, she still rolls to her belly. There's this little inner voice that says "SIDS, SIDS, SIDS" but she wants what she wants and won't be swayed otherwise.

At night, we put her in the room by herself and turn on the monitor to listen and trust that she's fine and it freaks me out every time I do.

Solid foods are now the bane of my existence. When she coughs and splutters, I silently curse that I should've found a way to keep Ukiah's old suction machine.

The act of breathing, one of the many acts that alluded Ukiah a big chunk of the time comes effortlessly to our girl. But I don't care how effortlessly she manages that tightrope act, I'm still going to put my hand on her back and feel for that delicate little rise and fall, I'm still going to listen for a deep sigh before I fall asleep, I'm still going shudder every time I close the door behind me when I put her to sleep at night and turn on the monitor, hoping and praying for the best. I'm still going to have a moment where I overreact every time she coughs when she's eating. Because I still can't trust it, and it's still my right as her mother to know just how well she's walking the tightrope on her own.

The New Normal

It shouldn’t be this easy. I sometimes complain about things that are perceived as hard, but really it’s pretty damn easy. And it shouldn’t be, you know? The easiness of it, the utter effortlessness in which things happen now makes me anxious. There should be a shoe. And it should be dropping, or it should’ve dropped some time ago. But it doesn’t drop, and so I don’t trust it, any of it, her, me, him, life. And yet somehow, I do, I have to.

Three years ago it was not this easy. Not even remotely. It was the most opposite of easy as anything has ever been. And I can never forget the heartbreak, and not just one heartbreak, a thousand heartbreaks that happened over and over again. It was the thing that never made me trust that anything could ever be considered normal ever again. I should try to block those mistrusting associations, but I can’t. I can never forget because in order to honor my son, I feel compelled to remember. In fact, the little things I can’t remember feel like little heartaches themselves. Certain medication names, surgery names have started to fade when I try to recall them. They come slow if they come at all. I still have all his records, I could look it up if I really wanted to, but that’s not the point. I feel haunted by memories of him and I feel haunted by the things I can’t remember about him. It all stays with me especially when it doesn’t stay with me.

I especially remember when I started to trust that things would be normal, and that’s exactly when normal disappeared from our lives forever, never to return again, replaced by uncertainty and heartache, and tears and exhaustion and everything that came after was definitely not normal.

But now? Now we’re in a new kind of normal, a normal where I’m finally trusting that if I fall asleep I’ll find that tiny body still in its crib, still breathing. I didn’t have this normal and I can’t trust this new normal. I’m starting to, but trust is hard-won. I still don’t trust myself to be the mother she needs me to be properly, because I still feel insecure in the mother I was with him. Was I enough for him? Was I really all that he needed me to be? He’s not around for me to ask him and get a proper answer.

So I don’t trust anything, not really. Given our history with car rides, it took me forever to relinquish my guard in the back seat next to her car seat. Chris had to coax me into switching seats. The anxiety I felt the day I finally sat in the front seat was crushing. It got easier. It’s still not simple though. Not really. Taking her anywhere by myself was terrifying, like anxiety attack terrifying. How on earth should I be expected to this on my own? I never could before, was never expected to before, and yet I did. Now it feels easy, not second-nature, not like breathing, but easy. At nights, I put her to sleep in the bedroom, alone. I listen to her via a baby monitor. This was not even in the realm of possibility once and now it’s commonplace in my life, it’s normal, it’s easy.

It sucks that it’s easy. I don’t want it to be easy. I don’t want it to be comfortable, because that’s when that other shoe will drop and our wonderful, incredible normal of now will become a new, much harder normal. I can’t trust easy. I can’t trust comfortable. I still worry that I can’t trust myself, although its getting easier to trust myself to enjoy it. That too was hard-won. But now, I see that smile, I hear that infectious giggle and I smile and giggle and feel alive and happy, and loving this normal, loving it so much. I just want to trust that it will be here to stay.