Monday, July 26, 2010

Raging Lunitic

Processing... It Isn't Pretty. (I wouldn't bother reading if I were you).

God. I hate my story. I'm sick of myself. But I can't just get over the pain of this. I want to so bad. I don't want to be this grim reaper person. And yet, all I can say is I feel myself slipping deeper as time has moved on...I think my subconscious knows it's loosing the battle. I think the part of me that was still looking for her is starting to realize she really is gone.

There is panic in this. And new ways to feel the pain of loss. Dreams at night, of a baby that dies. Visions of my baby - this tiny little person, named Gwenyth, that I used to have here at home, living with us, here with us. Then gone. A phone call from a doctor to tell me her heart stopped. The rush to get to her. And all the Guilt even as I know I am not God. Even as I know because I am not God and just a mother in a human body that all I could do was love imperfectly. That because I am confined in here and not all-knowing, that I am prone to mistakes and cannot protect my children from everything that is "out there" ready to take them down. She got a virus. After all she had been through. A virus took her down when my head was turned. And there was no warning that she was leaving, not even the very hour that she left. There was no warning.

What do you do with the image of a baby who wants to nurse, but is too weak? What do you do when that was the last time you held her? I didn't know that was my last moment, last close moment with my Gwenyth. I didn't know I wouldn't get to hold her again. I thought there was no worse feeling than seeing your baby long to nurse but not have the strength. The tiny whimper. I thought there was no worse feeling. I needed the doctors. I remember how much I needed the doctors to help my poor baby get well that day. I knew something was wrong with her then. But she wanted to nurse, she was fighting, she was there, she was going to be okay with a little help and some decisive doctoring.

Go home, pack, be there asap after the helicopter lands. It is an hours drive to where they were flying our child. We had to move. I remember Myers, at our house saying "the helicopter hasn't taken off yet." We would have heard it from our house and he noticed it really should have left by now. I took it to mean she was doing better. Myers was not on the same page, but I didn't know that.

Then the phone call. The rush to get back to the hospital (God. Align your will with mine, please....please God...let her stay. Life. Breath life into her. Please....)

The last time I held her she wanted to nurse. But she couldn't. I gave her back to the doctors. It was out of my hands. All I could think of to do, all I could offer as her mother was something she wanted so desperately but couldn't take. We left to pack. Her heart stopped. The helicopter never took off. She never got near the helicopter.

Now, I need to wrestle that memory down so that it stops yelling at me. It is one of my last memories of Gwenyth. And it is cruel.

My brain also plays Myers, standing there, that evening, that night, his arm having dropped down to his side, cell phone in hand, telling us a story with the words that still are bouncing all over in my head even now, "she fell off a cliff and she died." My husbands sister, a girl I loved with Myers and his family, the kind of love you take for granted because they are in your life for so long, the kind that you don't even think about because you just love 'em as if they'd always been there. She was seven when I met her. My husband and his mother and siblings lost all her days. She was Lane's daughter and their sister and now she... the word still seems so incorrect to apply to her. My stomach is sick as I type this here. Sick.

Two-by-four. Twice. In one day.

Eleven years ago I rode a bus down to Chattanooga and I remember the morning sun glaring in my eyes and I had tears for Myers and his family. I couldn't imagine what they were feeling. Their father had died suddenly and not exactly simply. There was a rush to the hospital and hopes that he could be saved. There was a helicopter transfer. There was no avail. I had only just started dating Myers and I saw his family have the rug pulled out from under them. I remember the palpable feeling of stunndness. His youngest siblings were two and five. It was two days before Thanksgiving.

Believe me, I know I'm not the first person to experience horrible things. And we live in such a bubble in the good 'ole US of A. I know others have experienced worser things, even here in this bubble. I know - I wrote of a story right here on Gwen's blog. The family in Bucks County, PA who's house caught fire. But, I cannot escape my humanness and how much it hurts to let go of a loved one. I cannot escape the images. There is not a lot of control in grief, it has it's knife to your back and it leads you where it intends. Each walk in grief is as unique as is the lost person by whom the grief was born. "Each loss is personal" -E. Kubler-Ross. Straight on.

I can do "okay" I can be "okay" and I can get through the day. But inside I'm wandering in a giant building with hallways and rooms upon rooms and no place to sit anywhere. No windows. Just doors, hallways and rooms and rooms of thoughts. I do believe there will be peace for me one day - only because I know that I simply will die if I don't get through this and come out of this mansion of nightmares to some sort of arrangement, agreement, amicable and muted co-existance with all that now lives with me. I will survive only because it is too exhausting to remain here. I go forward because it is too horrible of a place to stay. I long to get to some place where I can find some relief. I lunge forward out of sheer desperation that eventually I'll find a chair in a quiet room with maybe even a window. And, yes, there's that knife to my back as well. Forward. And, add to that a little girl that I love deeply and needs and deserves a sane mother. I have to get to this place everyone promises exists. But the way "forward" is not fast. It is not linear. It is a maze and it is exhaustingly slow. Add to that a child who needs a mother. Try doing anything complex with the needs of a two and 1/2 year old. Slow.

There are lonely places always for those who left so suddenly when I wasn't looking. Lonely places. It will be a long while till I'm not driven crazy at times by the excessiveness of the loneliness.

I think in some ways, I will always be looking for Gwen. I think that is the nature of the beast - the beast that is called loosing a child. Suddenly. The dust never settles when it's your child. Part of me will always be a completely raging lunatic fighting against all the powers that be...

I said it wasn't pretty. I told you not to read.

Sunday, July 25, 2010

Deepend Heart (a poem)

Foreverness of Love

Life has its seasons
as time will always show
like summer into winter
and tide’s ebb and flow…
Storms of life will rain
Winds of change will blow
But no power or passage of life can take
what love can reap and sow
For love once taken precious root
and given the heart to grow
will surely go on forever --
as only a deepened heart may know.

-- Terah Cox

Wednesday, July 14, 2010

Hope, Faith, Love and Grace

Two Months In, Two Months Out

Today there are now two months between us and us with Gwen. It is as much time as we had with her here, save two days. Yet, I know, it will always be yesterday in my heart and tomorrow in my heart that I was and will be, with her. My deal, my battle, my challenge is "the now" without. I live here. She does not.

What is asked of me now is to learn to be in this place with her behind and before me, ever out of reach yet ever present in my mind. To learn to ache but live anyway. To love, to laugh and smile with Lillian, with the world, in honor of Gwen. I actually feel called to a higher plane of existence, less I do injustice to the horrible day by which everything else I now can measure.

Horrible is a weak word. That day, before I could say "boo," tore my heart out, stomped on it, wrenched it out like an old wash cloth, gnawed on it and gave it back to me with some big chunks torn clean off. I think it also was replaced upside-down and backwards inside me.

It's a long recovery from that type of attack. And, I just didn't see it coming from a zillion miles away. I'm left with what I'm wondering may be a permanent lump in my throat, constant sinking feelings, and complete bewilderment, not to mention a total distrust of every future day I must meet.

Anyway, after that, it would feel odd to get angry at menial inconveniences and annoyances; to buy into the drama of everyday life. It would take forgetting Gwen to really have a horrible day. It would make light of the day I held her for the last time, therefore making light of Gwen herself.

So, I'm tempered now, against the world. I'm challenged to remember and reflect on that. Gwen is my hardest teacher. Add to that Marie. I have so much to learn.


Trying to Surface

I look forward to the day where May 14th is not the first and last thought that weaves through my mind when I wake and before I fall asleep. I read recently an assurance, that, that day will come. "Closure" will not. But, this author suggests, "the 'bad thing' will always be there, but when it begins to take its place among the good things life offers, we're on our way."

I will always live with me holding Gwen. Me, sitting there, holding Gwen and unable to join the world. That "me" is always right beside this "me". I knew when I left that room that day, then it would all really begin. She would really have died. I could have sat there holding her forever even as her tiny, little spirit was long gone. At least my arms weren't empty.

And I would say, in a lot of ways, I don't think I've joined time yet. I have been floating along, hour by hour, day by day, without ability to think or plan ahead. So, in some ways I am still sitting there and not yet "next to" that moment.

It's a weird place to be, to be honest. And anything "good" around me often feels muted and even fake or forced sometimes. I'm not miserable. Rather it's the feeling that I'm still floating back up to the surface, that's all. It was a deep dive and it will take some time to swim back up. Sometimes I don't have the energy. Sometimes Lil takes all I've got and I can't hear my own thoughts shouting to be heard. But, little by little I can see the surface becoming clearer and I can hear the "real" world's noises muffling through.

Sometimes I want to jump into the far future....where I have two children here with me again... . I suppose that is because I long for something more familiar than this nightmare - I want to have that definition of myself again - "mom of two" (two earthy children, as it will be). But I know that is only me trying to escape and that there is no way to get to that imaginary place.

Of course, that is also the problem with that "dream" anyway - it is completely a dream and all imaginary. That path to such a hope will be slow and my heart will be so weary. My heart lives in fear of having another child. It believes I will loose that child again too, unexpectedly and without warning. It is almost a protective belief, so that perhaps I can "prepare" myself. As if! But, none the less, that is the state of my heart.

Another pregnancy and all the weeks involved, each a mountain of hope - it is daunting. All the known uncertainties. A newborn baby to try to keep alive. Ignorance is such bliss and I don't live there anymore. For now, I'm sure I don't have the strength for that journey. And I know I don't have to make any decisions now, so I won't.

Faith is a Way of Waiting

I was away and now am home again. Nothing really has changed in the way I experience myself here in my house. I know, I know in time I won't always think "Gwen should be here, I should be having to counter-balance everything by her needs". I know eventually I won't be so aware that I'm not called to that duty anymore. Now, washing dishes is just washing dishes. It's not a sprint to get as many done as I can before she notices I set her down after falling asleep in my arms. Nap time for Lil is only nap time with plenty to keep me so busy, but none of it involving holding a baby while she sleeps, me resting so peacefully, contentedly with her, feeling as if the time sitting still is well-earned as a mother of two young children.

Waves of memories of times at the hospital - especially nighttime there, for some reason, wash through my mind at various times, too. And now, as I walk into these flash backs, I can't hold Gwen and think "oh thank Goodness she is here with me and okay now and all of that is behind us for now..." Instead I feel the strong urge to get in my car and drive to CHOP and go sit in the room in the step-down unit, or go to where her bed was in the CICU pod and just be where she was, where we didn't know what the future held and we weren't in denial that we could loose her (although we really were, you always are with your children even if their life is so clearly on the line).

There is a new hospital here in town. They closed the hospital building, where she last was, where I didn't really get to say goodbye to her in her "body-clothes" while looking in her deep blue eyes (she really was gone by the time we arrived even as they desperately tried to convince her heart to beat again. That memory is the hardest to "live" with. My stomach churns every time I am there again in my mind. I want it to turn out right, each time I am there). That building closed about a month after the little room there hosted her last hours. So, in some ways, I'm glad of that. And yet, I even long to go sit in that room again. Why is that?

I can only guess to really do so, to see her not there, in each place, would just be asking for and inviting some aggressive pain. But in my head, I still envision doing just that and in my vision I'm peaceful. Again, I'm sure that wouldn't be the case. It's as if part of my brain is searching for her, convinced I simply misplaced my baby and if I'd only retrace my steps, go where I last had been with her, then I'd find her there just waiting to be scooped up and brought back here where she belongs.

I wonder if that is why the urge is so strong - there is a battle in my own brain about what is really going on here - and one part of my brain really thinks I'm pretty dumb and feels extreme urgency to go get her, for heavens sake! There is part of my brain that knows she gone. There is part of me that whispers "I still feel her" and it struggles to convince me that she is not totally out of reach, that she is close but not in the same way as when I could hold her in my arms here and now.

So in all that, here's a little honesty - I know I'm not supposed to, “grieve as those who have no hope.” But, sometimes I do. And, yet, especially more recently I have welled up with overwhelming excitement at the idea of seeing her again (and then I tell myself, I hope that's true. And then I say, it is the better, more beautiful thing to believe, and it offers such strength for the day, and if ignorance is bliss, why not choose This as my ignorance of which I'll be Bliss about, since I lost the other kind anyway). So why not? So darn it, I am going to her. I'm going to see and be with her again. And "bleh" to anyone who wants to challenge that (I've been reading a lot of Frog and Toad books to Lillian these days. I borrow the excellent expression of "bleh" from Toad.)

So, sometimes I let myself dream of that day. If you know how excited your are just at knowing you are having a baby, or that you learn you are going to be a parent however it may come about (I want to leave room for those who adopt because I respect those who do so), and you know how you feel the day they enter your life as a child you can hold, then, can you scarce imagine what it would be like seeing them again once you've had time to actually experience them here breathing the same air with you for any amount of time and then had to say goodbye?

I would never want to leave my Lil. Never. But, should I have no choice in the matter, then I would find myself walking a familiar path, so similar to when I had to go to Gwen in the hospital and say goodnight and goodbye to my other little one. I walked into the hospital streaming my face with tears every night, so torn between to deep loves.

But to walk from one too one, if I were to leave here - and to see Gwen again after what already feels like 100 years - I think you'd find me running. So, I walk forward. I'm half here, half there. And, I'm not sure my feet will ever really touch the ground here fully again. And I'm not sure that is a bad thing either. I almost see it as a gift. But I can't really explain it, it's an experience of mind that words just fail, fail, fail. It's probably some choice too, but I see it as Gwen's choice, her gift to me.

And, after I wrote this, I just randomly picked up my little "handbook," called, Healing After Loss. Of all the places to open to, I read this on the page before me:

"Faith is a way of waiting - never quite knowing, never quite hearing or seeing, because in the darkness we are all but a little lost. There is doubt hard on the heels of every belief, fear hard on the heels of every hope." - Frederick Buechner

Pause. Read again. Wow. If that doesn't cut to the theme of where I wandered today in writing this silly thing. That's it. Right there. Doubt and Fear as a strong, imposing-upon chasers to Belief and Hope.

So then, I read a little more. And, the authors note and reflections about the above quote lead me to want to keep writing today, this time about Grace. Martha Hickman in Healing After Loss wrote;

"...every once in a while some minor miracle of insight and confidence, some serendipity with no explanation other than grace, renews us, and we are willing to relinquish our need to know the details. Instead we trust that all shall be well."

I see Grace as a little, dancing, butterfly, fluttering around us always. And sometimes she takes our breath away by landing on us. And our souls are tugged upwards and for no good reason that is logical and sound we find ourselves with the strongest Faith and Love we've ever felt. We are sure that all is Good. We actually feel eternity.

Grace really is no small thing.

On Grace

I think the above quote speaks as to why and how I understand grace to exist and work in our lives. I never thought much about the idea of "Grace" before. Yet, Grace has been on my mind so much during this ordeal. The first newborn baby I held after I last held my Gwen, is named Grace. In my mind that was no small coincidence. So probably in part because of that, the word "grace" kept floating into my thoughts.

I would think things like, "what does it really mean"? Grace has so many uses and applications. It is something we are given by God and something we are challenged to give to others as freely. It so often is thrown around as a word, it is something we "say" before a meal or even do, as in "being graceful".

It can also be something of a fleeting gift of experience, that little "butterfly moment" I wrote of. One that eases your soul a little. It helps you find peace and strength, maybe even enough to reach out to see if you can find some hope for clinging. Today, I looked up the word "Grace" and one of the definitions is; "a special virtue, gift, or help given to a person by God." There it is, a dictionary definition of grace. There it is to define the better parts of my walk through, or my swim up, or whatever you want to call this exhausting, long, confusing, state of extreme "bleh."


A Lucky Find?

This leads me to want to go ahead and place a poem today, here on Gwen's site. It's one I've been planning to place here, just didn't know when the spirit would move me. Today seems right. It is one of my favorites that I've loved for years. It is about four-leaf clovers and Grace.

Towards the end of May I found two four-leaf clovers totally by accident. They were so randomly found that I could almost make the case that Gwen and Marie actually handed them to me. The first one I found completely without effort. I was teaching Lil what clovers were. I reached over, plucked one and showed it to her. I said, "this is a clover" and as I looked at it with her I saw it had four leaves. I didn't know these actually existed. I didn't see anymore around. It left me a little speechless.

The next day or so, in a totally different place, I decided to test this happening and see if they were just all over the place and I had never looked. I didn't really expect to find one. I looked down and there it was, my second four-leaf clover. I looked again to see if there were more. I really spent effort and time. There were none.

What could it mean? I don't know. But it was weird. Gwen was born on St. Patrick's Day. She and Marie both died on the same day. I found two, four-leaf clovers without wanting to, without trying, without even knowing they were more than a simple and fun myth.

When looking into the history of the four-leaf clover, I learned that the fourth-leaf has both represented "luck" and "God's grace." What I love about this poem is that "luck" is from God - so in this case, grace and luck are one and the same. That is as it should be, I believe.

I know a place where the sun is like gold,
And the cherry blossoms burst with snow,
And down underneath is the loveliest nook,
Where the four-leaf clovers grow.

One leaf is for Hope, and one is for Faith,
And one is for Love, you know,
And God put another in for Luck --
If you search, you will find where they grow.

But you must have Hope, and you must have Faith,
You must Love and be strong -- and so --
If you work, if you wait, you will find the place
Where the four-leaf clovers grow.

__Ella Higginson

So, in closing for my post, two months to the day this fog settled upon me, I say "grace to you" whomever finds themselves here reading through my ramblings. Not "luck." Not "Good Luck." Modern usage has sapped the real and deep meaning behind that word. I think we ought to package the idea of luck as from God, therefore more aptly defined as "Grace" - otherwise, luck is so empty and meaningless. It can't even be sought.

But in stillness, you can invite Grace. With a still heart there is a landing place for grace. Even if it it is broken in 1,000 pieces and barely recognizable. Grace can visit upon us. Thank God for that.

It helps.

In Letting Go
In Moving Forward
God Give me Grace
Grace Guide me
Grammy and Gwen

"Big Yawn"

A pensive, sleepy, moment
(with toys supplied by her sister)

(I downloaded these and more from my dad's camera last week. These are new to me. I am glad for them. And yet, new photos, well, they bring about fresh, new grief for each moment these photos represent that I can't have back. I love them and I can't stand them all at once. See why grief is exhausting?)

Thursday, July 1, 2010

It's so hard to believe that love will prevail

These days I have too many thoughts. No direction. Little clarity. Just loss and a world pulling me along faster than my heart can catch up. I'm okay. But only beginning to walk through this. I'm so very tired yet there is no place to sit. It is everywhere and I can only keep moving forward.

I guess you could say I'm in between hopes - trying to find and fix my gaze on newer ones ahead while letting go of those now sitting still and becoming further and further behind me. I think I'll be here, in between, for a while.

So for today, I'm borrowing the ideas of others for this post. It's a song I've always loved but never dreamed would speak to my heart so accurately. But it does. I'm a big believer in poetry and music. So, why not share it here, since today it seems to be on my heart...the words to this song?

I'm okay. Just sad. I don't really know how to be anything else. I loved. What can I say?

I have to learn that my love still is...I have to learn to have peace with my love being directed at someone so beyond the here and now... and sometimes that just doesn't seem to be good enough. But it is all that I have. And my heart still loves. It is a painful transition. My gut still sinks and churns at the realization to know my child, my tiny baby girl is no longer under my care. That a sister and Aunt is not there to visit or here to host anymore. I feel as if I must go around with my face contorted in a perpetual warped, puzzled look. That is how it feels anyway, as I try to make sense of this old, new world...same place, totally different. What happened?

For now it's raining and there is no umbrella to be had - it's not that kind of rain. But it's just rain. It's only rain. And a long dark night.

It Can't Rain All the Time

-Jane Siberry

We walked the narrow path,
beneath the smoking skies.
Sometimes you can barely tell the difference
between darkness and light.
Do you have faith
in what we believe?
The truest test is when we cannot,
when we cannot see.

I hear pounding feet in the,
in the streets below, and the,
and the women crying and the,
and the children know that there,
that there's something wrong,
and it's hard to believe that love will prevail.

Oh it won't rain all the time.
The sky won't fall forever.
And though the night seems long,
your tears won't fall forever.

Oh, when I'm lonely,
I lie awake at night
and I wish you were here.
I miss you.
Can you tell me
is there something more to believe in?
Or is this all there is?

In the pounding feet, in the,
In the streets below, and the,
And the window breaks and,
And a woman falls, there's,
There's something wrong, it's,
It's so hard to believe that love will prevail.

Oh it won't rain all the time.
The sky won't fall forever.
And though the night seems long,
your tears won't fall, your tears won't fall, your tears won't fall

Last night I had a dream.
You came into my room,
you took me into your arms.
Whispering and kissing me,
and telling me to still believe.
But then the emptiness of a burning sea against which we see
our darkest of sadness.

Until I felt safe and warm.
I fell asleep in your arms.
When I awoke I cried again for you were gone.
Oh, can you hear me?

It won't rain all the time.
The sky won't fall forever.
And though the night seems long,
your tears won't fall forever.
It won't rain all the time
The sky won't fall forever.
And though the night seems long,
your tears won't fall, your tears won't fall,
your tears won't fall

Before I sign out...I need to share a prayer request. My heart is heavy also, for a family I learned about who faces a terrible, terrible loss. I think often about the path they are on.

There was a fire in a house of my Doula's uncle (Nichole was the doula in Philly who helped me bring Gwen into the world.) An 18 month old little girl named Kate, did not make it. Her sister, four-year-old, Julia, is recovering slowly at CHOP. Their older sister, Bethany, age 14, was at school when the fire happened and she is physically okay. Their mother, Susan, remains in a coma with little signs of brain function. The husband and father, Eric, is also physically okay, he was at work, but I cannot begin to imagine the state of his mind.

As Gwen has an audience here, let me extend a request for your prayers for this dear family deep in pain and unbelievable hardship and excruciating loss.

It won't rain all the time...but how can this family even begin to believe that is true? Pray for this family - that's what we are here for, is each other and to love.

"Do you have faith
in what we believe?
The truest test is when we cannot,
when we cannot see."

Ten years loom and as always seems to be the case, I find myself struggling the most in the days ahead of the anniversary  - be it her birt...