The Challenge

Sometimes we both, at the same time find ourselves soaked --

We are touchy, snap at our beautiful kids doing what kids do -- testing us -- tempering us and revealing just how weak we are...

I worry --

Does our sadness that seems to always live within -- does that effect our children negatively? Does it come out every day in less obvious way. Are we getting better -- and if so, better at WHAT? Better at feeling less sad? Better at ignoring it? Better at pretending? Better at compartmentalizing? Or is it that we should be doing better and we are failing miserably at weathering this crap -- at being "strong"...

What makes it come to a point like this - today, this week -- where both of us can't seem to escape but instead fall into the pit of it all... and is it self-pity or our we really just human and this is that hard??

I don't know.

Does writing about it help? Or am I giving "it" more power -- the grief/self-pity?

Is it grief or self-pity -- does four years and still having deep malaise that can overpower and "win" and thin out my soul... does four years finding myself still losing to it mean it's become self-pity?

And is the only answer really -- chop wood, carry water.

I think it is.

And sometimes it's a challenge not to judge that. Not to be angry that really - that's it. That's all there every really is -- and if there is more -- God only knows.

If.

And that's it. The now is everything - and the beauty is real - and deep -- and terrifying because none of it is certain beyond now -- and I know, I'm convicted every moment of my frivolity, of how little reverence I live with - how careless I am -- how I know better and yet don't live better -- I know I try, sometimes I can even count the times as try as really trying...

but I know...I complain, I muddle, I am frustrated and tired of it all... tired of the challenge, the clarity of my failure in it... tired of feeling anything anymore. of caring. and knowing caring does nothing.

It's all good. I know I'll get back to a better point of view - but I'm not ever going to be far from being cynical and feeling quite disconnected at best.

And we'll argue and we'll compromise and we'll realize nothings ever changed...

And we'll choose between reality and madness...

How thoughtlessly we dissipate our energies.

The ledges of our lives...

Well. At least I have Billy Joel.

The words. The music. It's something. It helps. It's good.




https://www.youtube.com/watch?v=wyKeAcfjmn0

Hello darkness my old friend....

It must be because it's March

It must be because her 4th birthday is approaching.

But, the pain that is always right there, it's inflamed a little...

Nothing, really is different.

And yet I think it is a little more intense these days.

Maybe it is that I have more clarity - this far out...

and apparently clarity isn't good for me...

I cannot gloss anything over... I see with such crispness and sharpness...

Details.

I know I'm over thinking.

I know I need to write it all down and finalize the "report" I plan to hand off to her doctors.

I know I'm devastated that my husband couldn't, wouldn't and never will get behind the ideas I have for making her birthday an "event" - for making something good with her memory and with the energy behind the pain and agony of all we did wrong--

I know next year I'll do it without him and be okay with it...

I know I had something specific to spill onto here but by the time I started writing it left me...

But it wasn't anything more than has been written here. I'm sure it couldn't have been.

My pain is a broken record. My guilt feeds on the ache of my soul. It lives and is strong.

I screwed up and didn't do the best I could have done...

I could have done better...I know it.

I should have ... my God, I should have...

And I know this guilt is robbing me of my life today ...

I know...

I'm trying...

But it is true...it's not made up, it's truth. So what do you do with truth like that?

(and...now I'm remembering the reason I stumbled over here...I think I wanted to walk with the thoughts about how terrified I was that I might loose her before birth - I remember the fear, the concern for "fetal hydrops" -the awful sounding term - the potential for that and how closely she was being watched...

And how cruel it is - I had a miracle baby... Not only did she survive to birth against some scary odds...she over-came a huge surgery like it was nothing...

And then one day...

I held her little, tiny lifeless body in my arms... my arms. my baby. this little thing, tiny little warrior I was just getting to know - I was just figuring out... I was just waking up to...

the little baby I held every night...all night long... her right there, me hoping to get her to where I felt I could see her strength.... six months old, somehow I had the idea that at six months old I'd feel a little more confident that she was okay... ... and who knew, maybe there'd be some amazing new breakthrough and she'd never need such invasive surgery again (I never wanted to hand her over again...I was still soaking in denial I think...but I wanted her as she was and I would have done whatever she needed...I know I would have...)

(March 5, 2014)

Rain

(Has it been that long??? To me I was just here yesterday -- leaning here... Trying to be honest somewhere with my pain...) 

Since that last post ... It all worked out ... My little rainbow baby boy got well and I don't ever have to look back. Many, many implications and much new light was shed on what happened to Gwen -- not a day goes by where I don't long to write it all up and set the record straight about where I failed, where the doctors. FAILED (Chop, UVA and local Peads) each in there own way). It goes deep and wide -- and the reality is the buck stops right here... Our marriage and our relationship is implicated but mostly, it's me -- three moments I did the wrong thing -- at CHOP I didn't make sure I grasped alloimmune neutropenia (my God I didn't even know what she had exactly and if you look at her blog, you see I was still researching it after her death with plans to approach CHOP for more info on her neutropenia ...). 

.....

I didn't take names of who I spoke to at UVA that day, the day I called to make ahematology  appt. (I used to always always always get names) and I didn't INSIST that they make an appointment with hematology on the day I was scheduled for her card appt there (they wanted records - yet she had a card appt coming up there, had already had one -- but they wouldn't just ask for Card to give 'em a fucking copy of the records -- they wanted direct from CHOP hematology  -- days, weeks later after phone calls and emails guess what?!??!?? The hematology recorded were "embedded" in cardiology from CHOP  - they had to get them from Card right there at UVA or could have or ....)

In any event, I couldn't schedule her with UVA to also get her blood checked at out next UVA trip because of that hoop jumping exercise --She died before her blood doc appt, the one I was finally able to schedule... 

Would we have discovered something?? CHOP never indicated or impressed on me that actually, the newt count could drop again -- they said casually, that we should probably have a follow up sometime after we get home (note, we were talking next to my child just before her open heart surgery or just after at day 2 of her life...). The docs have us nothing in writing about her condition and assured us it was taken care of - but we needed our hands held -- they needed to know our heads weren't clear -- they should have helped up establish the appt before we stepped out of CHOP. 

Sigh

Finally- that night before. She vomited (it wasn't spit up). She turned grey. At Lils bedtime. We called an emergency room Pead friend. Alloimmune neutropenia was never brought up durning this lengthy conversation - not on his mind or mine. Only her heart and the question of if her color was back to normal, then she was fine.

 I was worried, and too chicken to just go to the emergency my room - by myself. I didn't want to look like an over-worried heart mom in case I got taken less seriously later when/if something was really wrong -- and it was too inconvenient for all of us to go, for me to just be a mom with concerns ... It put everyone out if I over-reacted -- it made unnecessary worry -- it created guilt if I went alone to appease myself... Can't have my husband feel guilty or be frustrated that I'm over-reacting. 

Nope. 

I remember that day... Getting her up from nap ... I want to go back and tell myself what was going to happen... And all I can do is watch with all knowledge that was the last time Ii'd pick her up from napping...

It was rainy and chilly. We went to look at plants for a landscape project ... I didn't want to upset my husband by asking him to go back to the car for her blanket...she was in the sling, but no hat and it was chilly. I didn't want to bug him by being over protective. 

Did she get a little sicker faster from being chilled??? 

Do I really have to be that way with my husband? 

Finally. That day -- why did I not know that you could just walk in to the doc office, why did I have to know or not -- why did I care about rules?!? -- I waited and waited for them to call back -- finally I called them crying b/c she spit up a little green stuff...  I could have had her in an hour before -- 

Myers had just left for work. She had seemed ok enough even as I was planning to bring her in... The lack of wet diapers overnight was enough for me... But we didn't know to count breathes (a heart baby and no one told us about that simple check. An infection can cause rapid breathing - but without actually counting, I didn't know her breath was fast. My baby was dying, and I didn't know! How could a mommy not know?? Where was I!? How checked out and in denial was I?)

Lastly- if only, if only I had thought to remind them she is not just a heart baby -- if only CHOP had decided like UVA to also put her on an antibiotic at the slightest sign of a sniffle as they my sweet baby Arthur. 

I am plagued. 

Plagued. 

I've learned to get by. You have to ... And I have so much beauty around me...

 

I know that. 

But sometimes things just fall apart. My husband looses his job again - I knew this one wasn't going to last -- I knew that... But it was still abrupt when they folded the project - I guess I thought maybe we'd get a month warning ? 

And he's a mess - he has been. He had been melancholy and down for years it feels (maybe grief from his fathers sudden death when I had just met him ... He was 21 - and his dad dropped dead just before Thanksgiving break...). 

Then last week my friends baby died. He hurts for them, for the world and feels all his hurt anew.

So he and I are lint and sparks. It's bad.

My children put up with such horrible dysfunction - mercurial states, tension, breaking stress - we snap at them -- mostly because we are so deeply angry at one another-- they listen to us at each other   -- he always comes back down... He always apologizes ... I don't know where I am in this... I know I'm part of it .... But I know ... How I feel here... I struggle with feeling entirely responsible for his actions and behavior and melancholy -- that I do have so much to work on -- maybe, just many if I get my life in better working order -- prior itemize my family over projects for Gwen related things (but I do... every now and then something big comes up and the balance tips and I let it -- I need to work on that). 

But I also know I'm not responsible for his reactions ... But there is some things I'm sure I can do.

I don't want this for my kids. 

I see it see destroying Lillian. I see her learning - her brain being wired to chaos and unpredictability. 

Have we destroyed her for good??

Did all this happen because of our pain or were we heading here anyway. 

Doesn't really matter now anyway. 

Gotta fix it. 

But I'm here now. Drugging it all up and mixing it in... With the absolute beauty of my two children here, the complicated way I feel about Arthur being born after Gwen knowing we only planned for two and seeing two kids being our true limit (should we have brought kids into this marriage?). 

Mixing it in with Marie... Would she not have been on that mountain that day had I just gone to the emergency room Thursday night? What course of events did I lay out? 

And if God did it or planned it or "didn't give me insight on purpose" - 

don't tell me that unless you want to take this last shred of Faith, this last scrap that I use so I can pray for the awful things that keep happening to people I know, in this Godforsaken place. 

Cause what else can you do? 

And yes. It go all the way there -- he wouldn't have done that had his sister not died ...we lost him too all because Gwen... Because I failed to take care of her. Or at least there is enough of a possibility that things could have been different. 

It's just the way it is. 

You can't wash-out reality. 

Good song here- thank God for music-- it hurts but it helps sometimes to just let music connect into my pain.. At least I'm not drowning alone. And I'm holding on... I am okay. It's not pretty inside my head and sometimes the rain just washes everything away and I see it all so clearly again -- three loves died. My baby died. I never got to see her smile. 

What is it supposed to look like in here?? 

" It's hard to listen to a hard hard heart

Beating close to mine
Pounding up against the stone and steel
Walls that I won't climb

Sometimes a hurt is so deep deep deep
You think that you're gonna drown
Sometimes all I can do is weep weep weep

With all this rain falling down

Strange how hard it rains now
Rows and rows of big dark clouds
When I'm holding on underneath this shroud

Rain 

Its hard to know when to give up the fight
Two things you want will just not be right

Its never rained like it has to night before
Now I don't wanna beg you baby
For something maybe you could never give

I'm not looking for the rest of your life
I just want another chance to live

Strange how hard it rains now
Rows and rows of big dark clouds
When I'm holding on underneath this shroud
Rain 

Strange how hard it rains now
Rows and rows of big dark clouds
When I'm holding on underneath this shroud
Rain 

Strange how hard it rains now
Rows and rows of big dark clouds
When I'm still alive underneath this shroud
Rain Rain Rain"

Looking for the rainbow...

sigh...

 Are we talking about the enigma of pledging ourselves to protect the unprotectable. About the whole puzzle of being a parent?"    - J. Didion

I have a rainbow baby. But there is no rainbow.

My blogs are a mess...I'm not online anymore, I miss it, but it just didn't fit in the balance of things for the last several months... and now... I should be sleeping... but I had to wander here just for a moment. And at least I'm not here for grief. But, I'm here to just shake and angry fist at the world and the confusing place of seeing so many pray for your baby... something you saw once before... and feeling grateful and humbled for every person who spares a moment to send up a prayer for your baby... 

But, I know about that...I know about prayers. I prayed too. I'm praying now... but really... what does it take? What am I missing? What am I doing wrong?

Please, God, please... please let my baby stay...please.

There's a quote you see around, I think it was Winston Churchill who said, "When your're going through hell, keep going."  

And I will...

But when will it end? I want my baby to be okay. It's all I want. Wasn't 2010 and all that happend enough for a lifetime? 

I love these words to the song "Hallelujah":

"And love is not a victory march
It's a cold and it's a broken Hallelujah"

I am getting the same notes of encouragement again, telling me how strong I am... oh, no, no, no. I'm not strong - I just love my children, I love my little boy - I loved Gwen...and I'm marching cold and broken...  No victory march... I'm weary and worn out and my heart is pained, my faith is flickering.

Here's the blog about my little boy - I never even got to really set it up yet...maybe I'll get some time later this week as I continue to live at the hospital with my little guy. Thankfully he is healthy except for one small big thing... but it's terrifying and it's a nightmare to be in this place again, differently the same... I miss my daughter. We were home one day with her little brother. I miss our one perfect day...I long to have that again. I'm terrified I won't. 

http://www.arthurcarpenter.com/

Anniversary rambles

Words.

I'm quieter here, on Gwen's blog (so quiet that I decided to post this on TZ...I got shy after I typed it...and now don't know what to say on Gwen's blog...oh well.)

So I've been quiet, on Gwen's blog, and here.....but not for lack of thoughts about all... all that's happened.  Most times I long to get back here... but I'm known for spreading myself too thin. I'm known for burn-out. I'm known for lack of balance and feeling ten-steps behind where I want to be in life. Why should it be different in grief? It's just another aspect of my life now.

And I know what it means to compartmentalize. It's survival, in loss of a loved one. You don't "get over" it. You compartmentalize it. But, it's always there. But your mind constructs a special place for your grief to live. It is accessible whenever you need to feel it. Sometimes the door falls open and you don't have much choice but to let it all fall on top of you. That's all "healing" is in grief.

Compartmentalization. It's not something any more or less human than a simple coping mechanism. It's because time keeps on going, you just don't get a choice. Healing is only answered by the Hope of the Eternal. But for now, in human form, the ever-living anguish is set aside so you can breath, since to live, you must breath.

But I can say, I know now, about those paintings...the so called Vanitas paintings; the lemon, half-pealed, the candle wick with smoke curling up, or the vase over-flowing with flowers and a human skull sitting nearby. Transience.

Of course these paintings are not about missing people, but warnings to temper your soul and think on God. However, for me, they speak of lives I watched be here one moment and gone the next. They speak to me of what Joan Didion writes, "You sit down to dinner and life as you know it ends."

She writes:

"confronted with sudden disaster, we all focus on how unremarkable the circumstances were in which the unthinkable occurred, the clear blue sky from which the plane fell, the routine errand that ended on the shoulder with the car in flames, the swings where the children were playing as usual when the rattlesnake struck from the ivy.  'He was on his way home from work - happy, successful, healthy - and then, gone,'   "

So much this spring, I recalled sitting in our backyard, beside the hydrangea and peonies, with the one peachy-pink rose watching us from across the lawn, the sun beaming all around on an Ordinary spring day in May and telling Lillian, because we had to tell her, that her sister....

Lil was a two, almost two and 1/2. I have no idea what we said. I just know what it felt like. It was the first moment we admitted to ourselves, one of many, that our baby was not with us here anymore.

We were supposed to be spared the news of Marie until I suppose, when the family arrived in town to tell us in person. But we learned of an "accident" via a voice-mail left by her deeply concerned grandmother who wasn't quite sure of the details. "I think she's dead," my husband quoted the message back to me. It was 7:30, our friends kitchen. The most Ordinary place we could be. And Marie was dead.

I still feel gutted when I remember all this... 

Later, in another book where Joan Didion walks through her grief in the loss of her daughter (to circumstances eerily close to what happened to my brother in August, 2009) she writes, of her death:

"This was never supposed to happen to her"

And it's repeated throughout the book. I know exactly what she means including the repetition of that sentiment. I think everyone who lost someone, especially young, especially suddenly, and add to that, tragically... knows that sentiment. "This was never supposed to happen..."

And as I meandered around tonight online, I found another mom's blog, a mother missing her little girl, lost Easter, 2010. I found her because she quoted a song, one I heard and scoured the Internets to find the lyrics. It led me to her site. There she quoted a movie, Benjamin Button. It says it all:

"You can be mad at...how things went. You can swear and curse the fates. But when it comes to the end, you have to let go."

and...

"Sometimes we're on a collision course and we just don't know it. Whether it's by accident or by design, there's not a thing we can do about it."

Put it together and you have reality. Which is always staring us in the face, weather we like it or not. You sit down to dinner and life as you know it ends and there's nothing you can do about it. There's not a thing you can do about it. It's compartmentalize/let-go or you don't survive.

Thankfully, thankfully, I believe you can harbor more ability to appreciate what it means to love, when you find a gaping hole in your life where a loved-one used to reside. In my case, I'm blessed with so much love in my life - I don't take it lightly that I live a "roses and wine life" now (some of the lyrics to the aforementioned song), now that the "dust" has settled and I have a healthy baby, so far as I know, on the way. I'm well aware of the reality-beast staring me in the face every-single-day; the one that taunts me about the transience of my life and every-single-person I know and love and can't live without. The word "ripped" comes to mind - at any point in time a loved one can be ripped right out, or I of theirs. I'd always rather I didn't know what it means to love, the way I know now and could just live in the bliss of it all and pretend that nasty beast isn't sitting right next to me.

Instead the hardest part, for me is the crystal-clarity of how human we are all, beyond the transience aspect, beyond our frailty and quick "goneness" - but just the day-to-day, how we fail at love, despite the glaringly obvious transience of our moment here. No matter how much we know of it, that we are supposed to love, we can only fail, we are not God. So it's a weird place of deepened appreciation and condemnation.

That's all. Just weird. Complicated and yet so simple. Love the the instruction regardless - and it is humbling - you realize when you really focus on that, how uncomplicated life is and yet how much we let ourselves junk it all up.

"Time passes.
Could it be that I never believed it?"

"This was never supposed to happen to her, I remember thinking -  outraged, as if she and I had been promised a special exemption - in the third of those intensive care units....
When we talk about mortality we are talking about our children.
...what does it mean?

...when we talk about our children what are we saying? Are we saying what it meant to us to have them. What it meant to us not to have them? What it meant to let them go?

 Are we talking about the enigma of pledging ourselves to protect the unprotectable. About the whole puzzle of being a parent?"    - J. Didion

Loosing a child is humbling. Let's just put it that way. And writing about loss, of a child and a not-yet 20 year old girl (both of whom deserve so much more than such non-descript references, but for the sake of a blog-post the impersonal will have to do) - writing all this while a little baby-boy kicks inside me -it just leaves me noticing how weird life is and unexplainable - it is not a puzzle where the pieces fit together - and it will lead to insanity if you try. I'm just left, small-feeling. Humble. Tired.

And content enough. Content enough to try to do better tomorrow, on the things that I feel I can do better on, which is mostly about Lil and other people in my life - my loved ones. Content to keep trying to grow my garden - the one which Gwen is my muse (a real garden, no metaphors here). Content enough to always be ten-steps behind... knowing you can only do what you can do in the quick hours of the day...

Content in knowing, I just don't know the answers. Content with this exact moment, here where I am, with my imperfections eating at me, my daily little failures chewing on the fibers of my soul, knowing, it may be as good as it get's this week, this month, this year...and yet soaking it all in "as is." I'm hoping our worst-days-imaginable are behind us, while reality (that beast sitting near) has a good laugh at that daring act of bliss.

And the rain started again outside. How I love the gentle sound of the rain. It is soothing. Simple things. It's all we ever really have. Moments in time passing. If you can notice the moments, at least once in a while, you are doing okay.
I am doing okay.

I moved her ashes up-stairs on Friday morning. I put them in an appropriate container and put pictures in frames and all the trinkets that mean something... all on some shelves in my living room.

I'm proud of myself. And yet, I hate myself for how long that took. But I'm okay. I'm used to dual feelings, existing at one time inside me - I have a baby-on-the way -- while I am always going to be aching for the one no longer here... I am all dualness of feelings. And I'm okay.

It's raining and I love the feel of this cool air and the sound of the rain - and I feel the little life inside of me and time is passing...

It's all weird. And I face the enigma to protect the unprotectable yet again, a third time - but I know the love is worth it, I know Gwen, M and W are all lights... even in the darkness that remains where they once glowed. Love itself is an enigma. It's the most painful and yet most wonderful thing. But so simple and yet so profoundly powerful and convicting. It's sharp even as its nature is only gentle. And all that, in loss, is glaringly obvious. Love is humbling. Humbling.

If only things hadn't happened as they did two years ago today... but I know, the puzzle isn't supposed to fit. I won't try to make sense of it - I will instead, just keep on loving Gwen... and I hope, I can only hope, learning from the pain. I hope I believe in time passing now.

"Just know that I think of you, everyday I do. Everyday I do. Everyday. I'm living a good life. I'm living a fine life. I'm living the sweetest, roses and wine life. And I know you're near me. I hope you can hear me, I hope you can see into this life."  - This Life by Susan Greenbaum
------
This Life (click here) preformed by Susan Greenbaum

(The baby-loss mama whose blog I found tonight).
http://iseewhatyoumeme.blogspot.com/2012/04/dear-charlotte.htmlhttp://iseewhatyoumeme.blogspot.com/2012/04/dear-charlotte.html

What is Strength and When?

I need to just throw in the towel and go to bed. I'm just tried. When I'm sleepy the door to my own personal hell gets unlocked and my depressive side runs rampant... So, I won't take this too seriously. It's the usual washing dishes breakdown. That end of day weakness when it sneaks in and it wins.

I am angry...no one understands that I'm crying in three different ways. I miss my sil so so so so so so so so so much. The world grows darker as her light is left further and further behind.

I'm angry that photographs going back over ten years now challenge me - I try to be strong, but when you see both of them - so little, so young and they - I watched them both grow up and then they didn't get a chance in hell to begin their life.

Nevermind the child I carelessly lost. Yea, I'm still stuck on that Thursday night.