Let it BURN!

So this started as a "comment" to my May 14th baby-loss sweet, Mama friend, over on Little Bird (hi if you reading :) ). Well, as tends to happen with me...it started out as a, "I hear you to her" and the others who commented on her post...and it got a wee bit long.

I realized I had a bit to say on the subject of the "stuff you receive in the mail from hospitals after the fact"... so I moved here to address my full thoughts/record of displeasure regarding the mail... all the while envisioning of a giant burn pile as my inspiration.

Angela was writing about the bills. And other blogs I've read have also talked about it - it is God-Awful to receive and pay medical bills for your dead child. Myers and I are with you there. It is just so freaking messed up. So on that note... on my mind was some other stuff too, and of course, my burn pile idea...
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Ughhh. My heart. It would so rock for all (baby-lost parents) to get together somewhere in the middle and have a giant BURN pile together. Once a year. It could rival the heck outta Burning Man. Wouldn't that be awesome to all stand together and watch the paperwork burn... the collective "dead baby bills" and medical paperwork and everything like that?

Oh Man, the files I have - all the details I printed out about heart condition. To think about the time spent organizing it. I wanted to be an organized mama for my baby...since by nature I'm not, so it took effort...and I was so proud of myself for what I had accomplished (sigh..if I could go back and hold her more instead spending any time filing).

My favorite mailing, so far, was from CHOP, this summer- telling me that she needed more hearing tests. It was totally unclear why - except that some test appeared to not have been done for some reason.

I called them to kindly explain that she was no longer with us and I couldn't actually get her hearing tested anymore. I also explained, that regardless, I wanted to try to understand what the situation was with her hearing...even as she was gone, I'm still her mother and wanted to know what was up. I left a message to that effect.

Did I hear back on either account? NO.

Love it.

And, I'd also love to throw on to the BURN pile something UVA sent to me. I received it a week after she passed away. They estimated the "date of completion" to be August 9th. The letter opened with, "We appreciate the opportunity given us to perform and autopsy on your family member."

Wording here guys. Come on. I'm glad you like your job...but you, "appreciate the opportunity?" She was a dead baby. You appreciate that? There just has to be a better way to open that letter.

Furthermore, did I hear a WORD from them by or around the 9th of August. No. It wasn't until this week I got news that the final report was complete. Lovely. Perhaps they should give a range of time, with a wide girth, when they estimate. I can handle a range of time. It is harder to watch a date come and go for some reason.

(yes by the way....that meeting about the autopsy still needs to be scheduled and looms ahead.... not cool, not cool, not cool.)

Burn. Piece of offense paper - burn!

Another day this summer, I received a giant package from CHOP. I thought, oh wow - they are acknowledging the loss Gwen in some way - what a great hospital. How stupidly selfish of me. I opened it quizzically and found a stack of papers that appeared to be records. I read through. It was all MY records. Every detail about my delivery and few days after, at CHOP. NO note to explain why this was sent to me out of the blue, months after she was born and a well, died. There was no note acknowledging that this related to a child I lost. Instead I was kinda hit with reliving her wonderful birthday without deciding to do so... which makes it a not so easy walk down memory lane.

Between that and the "ear test" mailing, I'm still not sure if CHOP knows they lost one. She won't be returning in the future for her necessarily heart "up-keep" surgeries as she grows. Not that she was "scheduled" to - UVA was going to keep an eye on her - so CHOP wasn't necessarily "expecting her. But, it seems very apparent that CHOP as a formal institution won't notice Gwen not returning in the future and that kinda sucks to me. But, I don't know, I did think it would have been nice if I KNEW they knew.

I probably won't burn that, the file about her delivery... I'm sure I won't. But, it still sucked the way it happened into my hands. Perhaps I'll burn the envelope if I still have it.

It won't change anything. But it would be nice to see some of this stuff burn... and collectively would be pretty awesome.

(someday, I do hope to actually have something more inspiring to do in Gwen's honor...with and for other baby-loss parents... I hope I get there someday. For now, I'm getting matches, because one day soon...what can I say, it doesn't take a lot of energy to start a fire...and it feels good to do something.).

Longing...

Last night... I had such longing to go from Lil's room to mine and have Myers there holding her - to have her handed to me- to feel her weight in my arms - to nurse her and hold her and fall asleep with her there on my chest... the overwhelmed exhaustion of a mommy of two needy, wonderful, wonderful children. I longed, so much to go from one to the other. But there was no other....I would not walk out of that door into another quiet, dark room, with my other sweet child waiting to fill my arms...

and I keep seeing Marie (my sis-in-law) everywhere I look when I'm out and about. But I'll never run into her arms again. And...I have real things to do...no time to spend on this...

Rock and hard place. Life and its demands and pain and its relentlessness. My heart soaks it up, but when and where do I squeeze it out....it would take days, weeks, months and years of nothing but - or it will take that long, because I can only spend time here and there, relieving my heavy heart and by the time I return to it again, it's saturated again...

It is so heavy. I'm so tired.

But I loved them - and I am tied to that love now in pain. I can't set it down or will it away. Because it is part of the love.

And Grief has so many faces - so many moods - so much to say and push through my heart.... and I am at mercy to it less I kill my humanity.

And here- for this moment....by typing and dumping here, I've released some of the heaviness upon my heart...down the drain with some of the emotion welling up.... so I can get up from here and be in my life again... for a little while... on borrowed time. And life, of course, is not ALL bad, I can still see my blessings - rather clearly so through tears, actually - but even so it is hard, just life, day to day life...there while I'm holding such heavy thoughts.... so that is all... I'm unbalanced now....walking forward can be done...just not super easily and not without a price, because it all wells back up again until I can't hold it anymore. What a pattern... oh what a hell.

"[Anyone] can face a crisis, it's the day to day living that wears you out." -Anton Chekhov.

Magnify that truth in grief and you see me and my husband and everyone else with any degree of grief. Blah.

Gone baby gone but lots of Mayo.

There is sooooooooooooooooooooo much more I want to say...I long to get off my brain, but there is just no time....I shouldn't be here now...

But I'm here for a second and this is the thought on my mind...so here goes...

Grief.

It is three open jars of mayonnaise in your fridge.

And you don't even like mayonnaise

(except sometimes I use it when I make tuna or a recipie like that that calls for it...but other than that everyone who knows me would be shocked to see three open jars of it in my fridge. They, I imagine, would look at me and say, "who are you and what did you do with my friend, Laura?" My response - who's Laura?).

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And - I really don't have time to spend here - but that house. I noticed when back in NY again recently, it is gone now (the house I wrote about earlier here). Torn down. All you can see is a foundation. They are rebuilding.

I'm not there yet. I'm just gone, totally gone. I can scarce recall who I was before - and I have no idea who I am now yet. It changes by the hour - if I can ever actually notice it - and let's just say this, I'm not what everyone wants to see...I'm not some sort of phoenix, I'm not stronger in my faith, and I'm not kinder to others - I'm in fact way more sensitive to people who don't get it - and it's hard to explain what I mean there - expect, I don't fault them, just have trouble being around them, or indulging them, or tolerating them. I'm less open to the world save people I know are real... (and disappointed everywhere I turn at people who I thought were real)

Parenting while mentally checked out - it can be done, but it feels rotten. Again, I'm not strong, like people love to say - I'm not an great parent - yes - I do feel my love for Lil more than I ever could before and that is something I do love - it is part of the gift Gwen left me with - being able to feel more than ever before - but you can love your child and still notice you are not the mother you want to be to them right now... and hate yourself for not being strong enough to do so, even as you know you are failing yourself, your dream of motherhood. Forget my "role" as wife, friend, daughter and everything else....


So, NO, I'm not doing well, I've not moved on (someone actually said that to me today - someone I expected so much better from - I'm tired of people letting me down - of people who I wouldn't expect to, not getting it.). And NO it's not good that my husband has a big family (he is the oldest of 8) - that leaves 7 brothers and sisters with a HUGE loss, 7 people each grieving a personal loss - it is not better, good, or easier that his family is big - you can't just knock one off and say, well, we have others... it DOESN'T WORK THAT WAY!!!! Just like the fact that "at least she wasn't 12" as someone else said earlier on, about Gwen, doesn't make us any more "okay" with Gwen dying at two months old. NO! NO! NO!

As for the ""wisdom I'm gaining and the lessons I'm learning "at an early age" - please. You don't really want to hear all that's in my head. It's not very inspiring.

And again - for whatever I'm supposedly learning now, or later when supposedly my view will be better and "I'll know why this happened - because I can't see now, but later I will" (Good GRIEF, the things people say) - for any of that - NO - it still doesn't make this good in anyway.

And the guilt. Sorry - I'm her mom. Don't try to talk me out of that either. Gwen, I love you and I will always feel like I could and should have done better by you... I wouldn't be your mother if I didn't feel guilt in your loss. Don't tell me these things "just happen" and don't tell me reason or not it was "out of my control" - just agree that it SUCKS and deciding to be a parent means if you loose them, you'll have to live with guilt for the rest of your life.

I don't like who I am but I just can't meet my vision of who I want to be right now... and I'm not wallowing in self-pity - I don't know how to explain it. Except, I'm just kinda not here right now... and a little bit pissed off at the world and so tired of feeling so sad... and apparently not aware of all the Mayo in my fridge, to boot.

No. I am not here EXCEPT for Lillian and even that feels so poorly done.

I just want them both back. And I'm not an idiot. I know that can't happen. So, leave me the heck alone and let me feel what this feels like.... and just accept that it SUCKS. End of story.

Shoes that don't fit...

I guess this is how it is. Even the most well-meaning people can only stand apart and say words and look. Other people, close in your life, blood relatives (close ones) what can you expect? They mean well, I keep telling myself, they mean well. And, really, it fits with how they have always been and who they are. They aren't capable of "getting it" - and I should be sorry for them. But, I haven't the energy to do so. Instead, it actually hurts, because that seems to be the only thing I can do these days. Bleed.

I'm tired of all that is in my head. I'm tried of not feeling connected to my life anymore. I know, I know, in time. In time. This will become familiar enough (and do you not see how really, not super comforting it is to know, in time, I'll be accustomed them being gone. Lovely.)

It's so exhausting to feel so much constantly while trying to keep up a house which I already wasn't great at (and a house where memories assault me whenever they please). While trying to be everything I dreamed I'd be as a mom to my two-year old. While trying to make decisions, big and small. While being tired of the words that come out of my mouth, for they fail in every way to communicate anything. In the end, I'm bore myself. And there isn't anything to say in response anyway.

I'm glad I know it's not self-pity. But the world doesn't. The simple, fake world out there. They can't help it, I don't judge them.

Keep doing the next thing. There is SO much to do -in fact I'm now in-part depressed because of how behind I was and now really am in life. It is so daunting to face and I don't know where to begin - and by the time I get some kind of grip some kind of direction, Lil is awake. That is only if she naps.

I'm her playmate when she is awake. She doesn't want to play alone and I'm not a strong enough parent to insist. It is to the point where I let her fill the bathroom sink and play there for as long as she will, but the floor is covered in water and she often keeps draining and running new water. So, it's not exactly alone play time and if it is, well, I pay in consequences and she learns bad habits. Last night, I even decided that "hey, they are washable markers", go ahead, make yourself "a little bit beautiful" (those are her words when she asks to draw on herself).

So, I actually gave her permission to do her own body art. She drew on every inch. eyelids included. The second time she did this last night was after her bath before I had dressed her. This was not with my blessing - but I wasn't careful enough and she found the marker. And, I knew she was way too quiet for too, too long, but I had stuff to do in the kitchen and I had to respect my husbands need to "check out." Every inch. This time, she didn't stop there...books, toys, rug, furniture.

I was impressed with how well a baby-wipe took care of the situation, body and all. But, now it is all she wants to do. And it is not possible for her to understand why sometimes mommy actually hands her the marker and says "have fun" and sometimes puts the marker far out of reach.

My husband would barely speak yesterday evening he was so depressed. My counselor is always protecting him from me. Women are "verbal processors" and I basically need to respect that he can't be burdened with my grief. He is going to need me to respect his internal, withdrawing-way of grieving. I'm supposed to go find a friend to dump on. But when and how with a two-year old? I'm lucky if I can get her to take a nap these days. By the time I get her down I'm so tired and have a house full of work.

I can't talk to my husband about any of what I think about, about our losses. Not about that day, not about things I hope to do to honor Gwen's memory, not about all the people I've met online or through facebook who've "been there" for me, not about the CHD warriors I follow.

So. Here I am. Feeling forced to present the right face to the world, family included, for my own sanity really (it is better in the end, to play along). Forced to be very careful with the fragile other person here. Forced to just keep moving along swimmingly or not...moving along.

I wrote this thing below a while back. The shoes idea - I actually saw another baby-loss mom used the metaphor in something she wrote. It works. And I feel this way still - the shoes don't fit, but yea, life doesn't care - shut-up and walk (come-on you knew she wasn't well anyway, you are making too much of this, you should be glad for each moment you did get with her, I mean, it wasn't like she was a twelve year old girl and perfectly healthy...that would have been horrible and Marie was your sis-in-law, it can't affect you that much...it wasn't your sister).

Shoes That Don't Fit

A fake life
and shoes that don't fit.

I walk around.
People sometimes say nothing

The know I'm walking funny
They know why
The shoes don't fit.
They know the story.
But it is awkward and seems so much like a choice of mine
Like a statement I'm trying to impose
Like a lesson I am compelled to "teach"

No.
Far from anything resembling truth
I want these shoes off
I didn't buy these
I didn't ask for them

I liked my other shoes
(yes, at times, I did, I complained).
But I did believe them to be my choice,
I didn't feel as if they were forced on my feet
But they were
Just as they were forced off

And these were slipped on
The others obliterated

I don't really understand
I wish I did
It all happened so fast
And no real explanation
or instructions were given

And life is a treadmill
I have no choice but to walk
in shoes that don't fit
that aren't mine
some mistake was made
and these are my shoes now

I kinda hope I get to keep these
(even as I really, really dislike them
and I know they will never fit quite right)
It's hard to change shoes
When you are forced to wear them
forced to break them in
and don't really get an opinion