My Impractical Heart

"Hearts will never be practical until they can be made unbreakable.
- the Tin Man


I knew it was coming.

Why does the fact that it really is here....

March.

one year later.

How can it be this bad feeling?

It is late. Too late at night. Almost 3:00 a.m for goodness sake. I've been going non-stop on too many projects (okay, except for when I burn out and get negative things done in every area of my life...). But really, I've been bone weary with several things - trying to inch forward - too many things on my heart and in life... no balance possible.

So it really is too late to spend a moment here...this late, nothing good will come - I'm going to feel worse simply because of how tired I am... so I won't take this all too seriously...

But I'm stunned to see how March, just seeing it really here - affected me...

I've even been planning for this month. I wrote ahead on my kitchen calendar, her birthday - I decorated with clovers and hearts in our entrance way, today we did a centerpiece on our table with "Gwen things" (Lil made an angel of of bristle blocks - I LOVE this girl). I've been thinking long and hard on how to "celebrate" her birthday, how to honor her life in some meaningful way.

Yet as I head to bed and notice "Heart Awareness Month" is over (and I didn't get all that I wanted up on her blog) and I see the month, the letters spelling it out, March...I see the date telling me today it begins...

Her life here with me will soon be over-written. Starting in 17 days.

My time carrying her inside me is almost entirely over-written...

This time last year we were packing to move to Philly. We moved on the 4th or something like that. I remember it like it's still happening.

I can cope. I can push it all somewhere. I can remind myself this is love. The pain is love. That's all it is. So it's okay...

But God.

She is not here. I can't celebrate her first birthday with her. God, it hurts.

The heart seems to be so simple.

Made only to love and that is it.

This whole thing - it doesn't understand. Where, where is this baby, this little girl I love so much??? My heart doesn't understand and never will.

It just never will. I think March 1st will always hurt a little... a new year without. A confusion of the Hope of Spring. A clash.

Today, while walking out in the warm rain with Lil, I saw a daffodil just about to pop. The daffodils were in bloom in Philly. My little girl was soon to be born there. Spring would greet me in full force when we at last, left for home, with our two little girls...

I forgot however, that spring is fickle. Warm one day, chill and dreary the next. I remember wanting the warm weather to stay, to "kick-in" for good... now I can hardly recall, did summer even happen? How is it March? It was just March...

But here I am. And the daffodils are going to bloom again. Like nothing ever happened.

----
And I'm fine. I'm okay. I get it. This is just how it is now. This is.

I'm used to the breaking. The shattering. It's old-hat now and I'm a pro. It happens and then I just pick up the pieces again and keep walking on...

but it sucks. I just want her... I'm tired of always knowing how impractical hearts are....

this is how it is now.

maybe if I say it enough.

maybe then.

somehow.

it will be okay.

----------------
I looked at the new church directory. I think it came out a few months ago. We are a tiny church...started downtown, a "plant" from another one. It was nearer to our house and we love our downtown - liked the message - very intellectually challenging. They cared. I know. They check in...some of them. They can't touch this.... they have no idea.

I have more in common with someone in a third world country who lost three members of their family in some natural disaster. For us, our "natural disaster" is simply our very own life.

I wrote her name in. On the church directory. My copy of it anyway. I only looked at it today. Maybe I would have said something when it first came out, when I noticed they didn't include her...

Am I too sensitive?

What have I become? Too self-absorbed. My husband too? Or is this how it is.... who knows - we are for the most part (thank God) untreaded territory. Most people don't loose like this... We are uncharted.

---

I did one more task today... I used to have a tiny, tiny, tiny, really small, hobby-of-a-business with a friend. I was building it and excited about it...

Now I have to pick up the pieces. My biz partner moved during all of this and she wasn't the "paper work person" anyway. Let me tell you how much paper work I got done since Nov. 19th 2009. -None.

Thankfully the biz is so small it is insignificant - the past two years we don't owe squat in taxes. But I do have paper work - and possible fines for all that is undone - still.

But today, I did - I was at the post office and I finally got the guts to ask about our stupid PO box. It was closed a year ago. A YEAR ago. All mail in it, returned.

God I felt dumb. I apologized. I said we lost three family members this year. I tried not to cry (I cry easily when I'm frustrated or really embarrassed....so tack that character trait onto carrying around a baby girl no one sees...). I was totally on the spot - the line got longer the very instant I asked about the box - there were only two check-out people and I was taking up a lot of time - it took a bit of time for them to figure out our box didn't exist anymore.

I thanked her. I purchased two books of stamps. She asked if it mattered what they were. I asked for the liberty bell - I had a daughter who was born in Philly - so one book I was going to keep...pass on to Gwen's sibling/s one day.

I didn't cry. But my voice was weak. My eyes watery... but thank God I didn't totally loose it - as I face all the mess now in my life...

Some people "sail through their troubles" - I am aparantly not one of them.

Shipwreck over here. But one point for me today... I dealt with the PO Box.

---

I bought two St. Patrick's Day cards for Gwen. Obviously I'm out of my mind. I don't know what I'll do with them... but I had to buy the darn things. One was "Your 1st. St. Patrick's Day" the other was "Happy St. Patty's Day Birthday.'

I also got a great card for my mom and dad, for my brother and his wife (and baby-on-the-way), and my sis-in-law and her husband and "baby-on-the-way"... so I'm not all doom and gloom...

--

These days I stress the most over her B-Day coming up - and what exactly I'm going to do to honor her on it - besides blend into the St. Patty's crowd and drink... a lot... ;)

I'm afraid I won't come up with something just right in time and then have to scramble something together.

I'd like to move her ashes to the urn. Up from the basement...

But I can't talk to my husband...

He is full of heaviness and keeps working hard to keep himself distracted (his own words). He is not well... and I'm not able to do squat...

But I can get dinner cooked... so better go.

And, just for the record - Lillian is so sweet - it hurts. I love her so much - I'm so sorry that this is the world around her right now... she's rolling with it (yesterday she drew sad faces all over the place and explained they were sad because they missed their Aunt Marie). Poor thing - I guess I don't hide it all that well, and I know Myers is pretty evident in his sorrow... poor Lil... sweet girl.
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How really. How is this how it is now?

My life a mold I'll never fit in again - but I have to keep trying and trying just to push myself into the world I live in...

It's okay. But it is tiring. I'd like a break, some vacation away somewhere beautiful and just to be alone for several days, just me and my thoughts, my sweet melancholy, my love for those lost - so that I can at least define it all somewhat... and cry any time I feel like it...

The truth

As I share Gwen's story and other things for CHD awareness on her blog I drag guilt with me through every post I publish. I know I'm lying. She is NOT gone because of her CHD as all my posts seem to suggest.

She is gone because of a virus. Any baby could have got the same virus and left that quickly. We were schooled in that fact by her cardiologist who went over the autopsy with us and told us the perfect condition of her heart and its repairs.

Gwen is a success story for congenital heart defect. Like so many of these kids, she was going to have a long road ahead of her - but she was going to, for the most part, be just fine. More surgeries were unavoidable, but as she grew she'd get stronger and more able to handle them... so the risks were going to go down as she grew (okay, it wasn't going to be simple...I'm making it sound to simple...but there was so much real HOPE).

I feel as though I'm using her story, her sad story, to raise awareness of how awful CHD is...that babies die from it...."see, look at Gwen." But that's not the truth. Babies die from it, yes. But, Gwen did not.

----

I didn't know where to put this... I wrote it while making the post for today on her blog, but I can't publish it there (everyone will think I'm still grieving really hard, they will try to tell me it wasn't my fault, "guilt is normal but I can't listen to it..." - all loving and kind responses by people who care and want to talk me down of my ledge.... and I don't want to waste CHD awareness on that caring sentiment...And no, I don't think I can handel someone saying I "did the best I could" - really - please, please tell me I can do better than have a child die under my care... please don't say that was the best I could do. I want to keep the focus CHD - not the reality of my story that people can't handle.)

But... here is the truth, so I'm honest somewhere...

Looking back, I just want to fix it. Do things better. Everything. I want to Kangroo care with her more. I want to find out I can fortify her feedings with hind-milk instead of formula sooner rather than later (even as I'm so glad I did learn that at some point- thanks to another heart-mom I met there). I want to make sure I'm with her even longer into the night and arrive earlier in the morning while she is at the hospital.

I don't want the stress to win as we take her home from Philly to Harrisonburg and not soak in how wonderful it was we were taking our sweet Gwenyth home. We were fighting and were stressed because packing took forever and we got lost on our way out of Philly... how could we be fighting in the car with our two sweet girls in the back? I want to keep her protected and safe when she is home. I want to notice and clue in to how sick she is before it's too late.

Real life is so imperfect, moments are everything and hind-sight's 20/20 is cruel. "We don't remember days, we remember moments," so it is said. I remember the moment she was born, vividly. I treasure that moment. I remember the moment when I saw her diaper was not wet enough for how long it had been and yet didn't register yet what that meant. That moment... it lives just as strong in my memory, and it will always be a weight I can't bear, yet can't set down - it's mine to bear - it's chained to me.

One memory will always seep into every good memory I have of my sweet Gwen. One memory will always taunt me and tear at my soul every time I think of her and love her. One memory will never leave me alone... I really meant it when I said I belonged in jail after she died. It was criminal. My instinct didn't kick in. What kind of mom is so caught up in daily life that she misses her "heart-babies" need?

A two-second google search would have clued me in, for a healthy baby, that situation with the diaper, that was a giant red flag and flashing lights. I checked, just the other day, and yes, a two-second google search would have clued me in. What was wrong with me - how did I not tune in to my child's need? I've googled for far less.

We love so imperfectly, deeply but imperfectly. Hind-sight makes it glaringly obvious. But this was more than imperfect - it was criminal.

One moment and I didn't stop the train and alter which tracks we were on... I was supposed to make a switch, get on route to the doctor, then and there... that was my chance. I could have given her some Hope. Instead I just kept barreling foward in regular-life mode... I took note, I wondered about it, but why didn't I go one tiny step further... why didn't I stop the train for a moment and get on google and try to rule out any slight concern I had... Where was my mind that morning? What was wrong with me?

And this train of thought goes on believe me- that was the beginning of several different "moments of decisions" where I chose the wrong thing. All moments now chained to every wonderful and sweet memory I have of the baby I no longer can hold...

So writing on Gwen's blog for CHD awareness only stirs this all up and makes me so aware of the reality - it demands to be acknowledged. And, don't get me wrong, I'm okay. I really am. I even hope and plan to one day talk about what all mama's need to know so no one makes the mistakes I made - over-there on Gwen's blog.

I'm okay up here on this ledge - I'm at an amicable place with it - it's part of all that happend, it's not going to go away, it's not going to change, time won't talk me down to a place with less tension. It is what it is. Things I will always wish I did differently, things that will always cause me to feel unending frustration with that person I was in those moments... I lost my baby and those moments contributed - there is no other way to square it. But I can live with even that- because again, what choice do I have?

None.

I'm here. All that really happened. And time is moving on. Life doesn't really care about how I feel about what's behind me and frankly it will keep handing me stuff whether I feel "ready" for it or not. Process schmocess. So - yes - live with it, that's the bottom line... carry it and just keep trying to keep up with life and for God's sake, learn from what I now carry...

Part of learning is to admit the truth. And I do.

And for now, I had to be real somewhere. I feel so false on Gwen's blog... I had to be real and honest about the truth somewhere.

Hi. How are you today, old friend?

And the weight of care, the balance tipped again.

Nothing horrible, just one more person I care so much about, who is dealing with a little bit of heavy stuff - normal, life stuff... but he is my brother. The only one have besides my in-laws. I'm close with him. I care about him. He is only two years older. We grew up together. His weight is mine, even as I'm supposed to have good boundaries.

He will be fine. It's just his job and crappy stuff. He is the most caring, dedicated, responsible person I know. He's worked so hard to get where he is; a military academy undergrad (back surgery caused him not to be commissioned). He joined the Peace Corp. He worked for USAID. Then he went to a excellent grad school and now has debt piled up to pay off. So he joined the corporate world so he could tackle the debt.

He just is in a job that isn't the best fit for him, it's just not him - and it is starting to be apparent all-around. It just sucks the way it is going down - his boss, this woman who from his description is pretty cold and hard-edged, actually put him on "parole" - and I want to punch her in the face. My brother is an amazing person and it pisses me off that she doesn't see that. He has a baby on the way too - their first. He doesn't need this now.

But he'll be fine. I just care a lot about him and hate this for him right now. I can't help it, I am taking it probably too personally - and it is affecting me. But I'll be okay too. But, really - not this too, come on world - can't anything just be boring and possibly simple over here? Anything?

So I have to go to the grocery store an it is almost 10:00. I'm not close to being done on my project for Gwen with the Friday deadline. My baby sitter canceled today - so that was that. Couldn't inch forward. I only left Lil's room at 8:45... we are getting better at getting her to bed earlier - but tonight was on the later side of better, she was so awake for some reason - maybe over-tired probably. Can't win. If she naps she won't fall asleep till 10 or 11:00. If she doesn't sometimes she is over-tired at night and won't settle. So my small evening is getting smaller as I type.

But for now, I just re-read something on Gwen's blog. It still speaks for me.

http://www.gwenythcarpenter.com/2010/07/raging-lunitic.html

I realize the house I was walking around in - I'm still in it... and it has new wings and new floors for each person lost. I'm now resigned to it. There is less panic. I'm strolling through now - I am becoming used to feeling constantly horrible just underneath the person I play in real life (or work very hard at playing...).

It's my friend now. Grief. It's like - oh, yea, it's you. Hi. How are you today...and yea this stinks. So what's on the plan today - am I going to find the guilt raising up in me, the anger, the frustration, am I going to play over in my head thoughts of M, will I begin to get to W? Will I just bump around from one thing to the next?

What about Lil today? When for the first time I as far as I can recall, she pretended I was Lil, taking care of the little baby she was pretending to be - she said; "Pretend Gwenyth was still here, and I'm Gwen and your Lillian." And she pretended to be a baby practicing how to say "Lillian."

What do you do with the bitter sweetness of that now...now that I can actually let myself feel it for a moment. I played along. I love her comfort with remembering and thinking about Gwen. But is does well...I love it. I wouldn't trade it. I don't want her not to do it... So what do you do?

You chop wood and carry water and see the knife in your gut and say, oh yea, it's you...how are you today?

Grocery store, here I come.

A Moment in Wonderland

I'm over on Gwen's blog for a while... http://www.gwenythcarpenter.com/

It's CHD Awareness week/month. Lots to say on her blog... Gwen has a lot of friends to raise awareness for and wants everyone to know about congenital heart defects - why there is so much HOPE for babies born with #1 birth defect in the country. So, I'm over there, loving Gwen with every word I write. And missing her...

Besides what I want to place on Gwen's blog, I'm working on a project with a deadline and I'm way behind. It is Gwen related, so basically hell or high water won't keep me from trying to get to it and finish it perfectly the way I want it.

At the same time things have taken on a new from of complicated...but I don't really have time to address it now... and can't for the most part anyway... being a public blog, it would be gossip.

But a lot of new things have come up - a little brother-in-law having some hard times (GRIEF SUCKS - let me tell you - sometimes I swear I feel like it is trying to kill us all). And I can't go into details, because again, this is a public place...but :( :( :( :( :( :(

My heart is also heavy for a BLM, the whole family really, whom I know from my local BL support group who almost lost another child. Now the hope is to get him a bone marrow transplant which should be the cure. But there is a long story there, as you can imagine. I care for them so much - very much the same way I feel about all the "heart babies" I know from CHOP and then through the facebook world of CHD. Yet I remain helpless as I watch and care...

They need all the love and support they can get, you are welcome to follow here:

http://www.facebook.com/profile.php?id=1516998852#!/home.php?sk=group_184209251610246

http://www.causes.com/causes/573579

I'm sure there is more...I know there is....but my whole point tonite is just to put a shout-out in for Gwen's blog for CHD awareness week and then go actually place what I mean to place there to launch off the week...

And to as not make this a waste of space, for fun I opened one of my fav. little book of quotes and looky what I found:

"Got is not
the voice in the whirlwind
god is the whirlwind."

- Margaret Atwood

Hmmm. Okay. I'll go with that. That works. It does maybe lend some hope to all this...cause it is a whirlwind if ever...

And:

"God moves in a mysterious way (me interjecting, YEA, YOU CAN SAY THAT AGAIN)
His wonders to perform;
He plants his footsteps in the sea
And rides upon the storm."

- William Cowper

To that all I can say is I hope so, I really hope so...

Okay and I dug a little and here goes, I found one for the road - this really is the bottom line;

"For us there is only the trying. The rest is not our business."

And that, is what it means to be knocked to your knees and totally humbled by Life. God is God. We are not.

And in some ways that will never settle in my heart... God or no God, in the final analysis, even as I believe wholly "we are our brothers keeper" and the "bell tolls for all" - in the end, we do what we can, we are called to, we have to - but God or no God - the rest is not our business... and I have to then choose Faith about that "rest..."

- but sometimes I can only be here in this moment, life-sick (actually maybe getting sick...I hope not, really hope not) and over-tired with my cat begging me to feed her again (she has problems) and my husband in bed reading, beat-down and unable to face life at the moment (and who blames him), the sound of the cat water-fountain humming (they are spoiled) and Lillian sleeping soundly in her bed across the house (I love that little girl), Gwen is in my heart (and constantly I wish she was actually here), and here in this moment I'm aware it is actually really good and simple and okay... Here and now is as far from what I want as I can imagine, nothing like I ever dreamed, zillions of miles from perfect, absolutely not painless. But it's okay.

And, darn if the clock doesn't keep dragging me along... geeee, let's not ever get too comfortable here now, shall we? I hate you clock. Time. I would like to have a word with you, but you never stop, for goodness sake... like Dorothy and the white rabbit, yet this "wonderland" I'm stumbling through, well hello, it's my life and there is no door out...

Oh well. It was a good moment while it lasted... okay Life. Bring it.
---

Love to all BLM's and anyone reading... May you find good moments to soak in.

Go Underground or Risk it?

I'd like to feel more free to really vent here. I'm surprised at how there are things I want to be able to vent anonymously for fear of judgment, hurt feelings, misunderstands or just awkwardness.

I'm so acutely aware of all that now. It's such a part of this - I'm honestly tired of it.

I don't link this blog to my blogger profile - so I think, as it, it would be hard to find by most people...but I've reached a point where I'm holding back because I can't risk someone I know personally or family members reading this. It's just not meant for people I see face to face, or who are "too close" to the situation, or haven't experienced a loss like ours.

It is supposed to be a quite safe place where I can scream at the top of my lungs and be full of self-pity just for a moment or really shed raw grief that chances to make me appear mentally unstable - but a place that I'm not totally alone either. I feel isolated enough at times...it doesn't help to have a quiet empty place to turn to when that feeling of isolation settles in - now does it?

I'm grateful for the child-loss group in town, who's name I won't mention for fear of it coming up in a search engine and directing people I know here... see what I mean, I've become paranoid. But they are there for me - hugely so. I'm humbled. But I also need this little place - it's how I think my thoughts.

At the same time, I don't expect a soul to bother with all this - I'm not taking good care of myself, I don't get enough sleep - I'm prone to rant and ramble and not make a heck of a lot of sense in the end. I often write more than I care to read... So...

Who am I kidding - I am writing this for myself... the blog just happens to be a nice format. But comments and people to walk with is so nice too... and I've been suprised at some of you who've reached out - that I didn't know were there...and I appreciate each you (even if I've not responded yet...I'm way, way behind in being in touch with everyone I want to be in touch with - and that is how I was before all this).

To what end is this blog - another "grieve out loud" advocacy blog, there just for the sake of being one more blog being open and honest about grief - or a safe quiet place with a easy-to-use format for me to write my heart out...

Cross-roads. What to do?