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"