Tuesday, August 31, 2010
Myers and I want to take this moment to extend a most heartfelt Thank You to Rob and Kelly Lineweaver. They told us a long time ago that they were walking in honor of Gwen. Myers and I have not been able to garner enough organization where-with-all to yet raise up much beyond the tree we planted at the JMU Arboretum...for now anyway. So, on that note, Rob and Kelly - their choice to do something I wish I could have organized - I am so grateful - this is an important walk - and Gwen's name should be memorialized here.
Through her memory, may a glance, a moment of awareness, be awarded, for her fellow "heart" babies who are still fighting the good (and long and hard fight) and for their parents whom life, without asking, signed them up for a special dedication of heart and soul. Donations in her name bless her life and honor her memory by helping her dear friends. So - for this - and for all who've given or will give in money, thoughts, or prayers- THANK YOU!
Rob and Kelly's Heart Hikers Donation Page
Event: Inaugural Greater Washington DC Walk for the Adult Congenital Heart Association (ACHA) and Children’s Heart Foundation (CHF)
Date: September 12th
Full Details (location, time...)
"The Congenital Heart Walk is an exciting, joint effort between the Adult Congenital Heart Association (ACHA) and Children’s Heart Foundation (CHF)! This new signature fundraising campaign is designed to provide hope for the millions of families forced to face the challenges caused by a congenital heart defect."
"The Congenital Heart Walk is a way to show the nation how a team of inspired individuals can make a difference. Funds raised support the missions of both these national non-profit organizations who are dedicated to improving the quality of life for those living with congenital heart defects (CHD)."
(a special thank you also is warranted to Gwen's Aunt Becca - as she was essentially our family photographer and is the reason we have SO many pictures by which to remember Gwen. Most of the photos in the above collage are all thanks to her.)
Saturday, August 28, 2010
This post is in honor of all the (now) perfectly healed hearts and bodies of all CHD babies and other babies and children who are no longer under their parents loving care here... and for their all their loved ones who notice them gone, here... and who are banking everything on the promise of the "foreverness of our hearts..."
Only a Healed Heart Knows…
…why life puts love and pain together
and why some things in life fall
so far short of forever
It may take a sky-full of faith
and every prayer you can pray
to turn rivers of tears
into a healing rain
But like the rose
on a spring morning
may time show you one-day-when
that a healed heart knows
how to unfold to the light again
-- Terah Cox
More Than a Memory
You were here just a moment ago,
But that moment has flown away
And gone is all we planned to do
all we could still share and say
But we know with all our hearts
that your soul song still goes on
So we pray you find the sweetest night
and the longest, brightest dawn
And may you go as a feather goes
when the wind blows every which way
where cool, rushing water flows
when the river rushes away
May you rise up like the morning dew
so soon after it falls
and fly on the wings of tomorrow
as a new day gloriously calls
And may you be as an echo of fullness
though emptiness has filled it,
the breathless overtone of a melody
after silence has stilled it
And someday when time reveals
what only love can explain
and memory's precious tears
become a healing rain --
May we know what you must now
that truly, nothing dies
when it can live on as the light
of a smile in loving eyes --
And if we can be together
in the forever of our hearts,
however far away you seem
we'll never really be apart
-- Terah Cox
Come, Holy Spirit, Creator blest,
and in our souls take up Thy rest;
come with Thy grace and heavenly aid
to fill the hearts which Thou hast made.
O comforter, to Thee we cry,
O heavenly gift of God Most High,
O fount of life and fire of love,
and sweet anointing from above.
- Gregorian chant hymn
Dedicated to all the children who left, like Gwenyth.
All now have healed hearts and healed everything.
Healed and whole, but not the way we dreamed or wanted, wished, or prayed.
Lord, we are so humbled by their presence in our life, so shattered by their loss.
Help us, with the heartache that is now ours, that lives strong with each golden memory held so tight. Fill our Empty arms with Grace. Somehow. Please. Help our hearts to still know their love. Help us to remember their blessing to us as constant and eternal, even as their moment here with us has passed. May we feel ourselves walking to them as we walk away from them, here.
"It may take a sky-full of faith
and every prayer you can pray"
Wednesday, August 18, 2010
Oh the pictures (and video) and the happy sadness of them now. I must say, I find it striking that the only video Myers and I took, that I know of anyway, is of Marie and the nieces. The only video we took last year. They are playing in a field of clover, at the Carpenter's family house at Tate.
But, this is for you Marie.
We miss you.
The Parting Glass
O, all the money e'er I had,
I spent it in good company.
And all the harm that ever I've done,
alas it was to none but me.
And all I've done for want of wit
to mem'ry now I can't recall;
So fill to me the parting glass,
Good night and joy be with you all.
O, all the comrades e'er I had,
They're sorry for my going away.
And all the sweethearts e'er I had,
They'd wished me one more day to stay.
But since it falls unto my lot,
That I should rise and you should not,
I gently rise and softly call,
Goodnight and joy be with you all.
If I had money enough to spend,
And leisure time to sit awhile.
There is a fair maid in this town,
That sorely has my heart beguiled.
Her rosy cheeks and ruby lips,
I own, she has my heart in thrall;
Friday, August 6, 2010
One of the "soundtracks" to this experience of "letting go" has been a CD I bought impulsively shortly after May 14th. I normally stop myself, go home, research and make sure I really need or want whatever it is I am thinking of buying. Especially with CD's, because I'm suppose to be using my IPod (since I have it, I ought use it, is my logic).
So...I found myself caught in the small CD "section" in Target with this in my hand...and I tell you, this CD, it was needed, absolutely needed, couldn't have done this or do this, without...
So for this photo I'm posting, I thought I'd share this song. It spoke to me - for me it is Gwen's song.
If you see me speak without words
Know that I am speaking of the wind
And if you see my words like wind
Know that soft tongues cut through stone
And if you see my tongue like stone
Know it's wisdom lies in silence
And if you see my wisdom in silence
Then with you I will always be
And if you doubt my true love is true
Just see how you have no mockings on your hands
And if you see you wear no chains
You are free like poor men
And if you see your freedom in being poor
Pleased you'll be with the treasure of your mind
And if you're pleased with the treasure of your mind
Then with you I will always be
And if you wonder how it is that I left
Just watch the sun set slip away
And as you watch that sun slip away
Know some things are better left unseen
And if you know things are better left unseen
Then night shall carry you in her arms
And if you see I carry you in my arms
Then with you I will always be
With you I will always be
I thank the Good Grace that put this CD in my hand that day... it was no small thing.
This blog space need not be about my decomposing mental sate as I fumble through this loss. I'll find somewhere else to unleash all that... (and I mean another blog, no one in my household is at risk. :) )
So, for here, on this blog, in the next what, months? I guess...I would like to post the final details that we will learn in the coming weeks. (Yes, we still have one more doctors meeting... big ugly thing looming. However we don't expect to learn anything new. Just confirmation of the preliminary "results" from the UVA doctors. No date set yet. But we'll get that call soon enough, I expect.)
At some point, I'll write the details of May 14 and the days leading. (I figure I ought to do that, if nothing else, just to make sure we don't leave questions should other "heart baby" parents wander here and loose hope.)
I want to post some of details of the service we held to celebrate her life among other things.
For now, I'm going to quiet down my "voice" a little here...on this site. Oh this blog, this place where such a wild, unbelievable and sad story found itself displayed. That "story" right now, is something we live somewhat parallel to - and at some point, we have to fully step into. But, somehow it helps me to "keep" it all here and not be alone in the words.
On that note, let me say, I humbly thank those who followed us here and loved our Gwen with us and cared for our loss of Marie. I implore you to know that there are so, so many who struggle right next to me. They are Gwen's "buddies." Other "Heart babies" and all the kids in these Children's Hospitals. The parents of these children, what is asked of their heart and soul on a daily basis...words fail me, really. The demands on their heart and soul is almost cruel. And, children die. Babies die. Teenagers die. So, I'm just one tiny little person with my own personal situation and point of view and reaction to it all.
So, just know, there are other children and their parents who are struggling and still here. There are many parents lonely for their child. If you find yourself with a moment, I hope you will maybe say a prayer, for them - the parents of sick children and of eternity's. Maybe even donate to your local Children's Hospital on a yearly basis or find a way to support a local parents bereavement group. What a way to honor Gwen and anytime spent here, following her little tiny story.
She was one of many babies that die. One of thousands of children that die. Myers and I and my mother-in-law are three of more parents than I care to think. It helps when others who may not have been here, at least, just spend a moment to listen, cry with us, and/or acknowledge that "we did have a child named..." it helps because we do, we really do want to join the ranks of the living again, but we carry our children with us, and we just need the world to tell us they are okay with that.
"I hold within my hands grains of the golden sands"
Even as we talk to sweet Gwen's doctors in person one last time, our experience of this loss will go on for sometime. I wish it wasn't that way. But I seem to be human. And this is not a TV drama. Believe me, even reality TV can't touch reality. It doesn't just "wrap up" and fade to music once we get our "final" explanation from the doctors. And believe me, no one would choose to "wallow" here. Believe me. I wish I could cue the music.
When it comes to my child, I'm all heart. I will miss her everyday - without effort. And in time, I suppose I'll be tempered to the horror of how we lost her. In time, with effort. And somehow in that, I'll eventually come around to that fact that something else, so far out of left field, some other sudden tragedy really did whisk away another person we loved so, so deeply. We were left so stunned and helpless, both arms reaching in both directions looking back and forth, back and forth, saying "what the hell just happened"? It is something we still kinda mumble in present tense. It takes a while.
The simple obligation I have to my daughter Lil, a niece and big-sister, is probably my most sobering whack to the head. Her sweet little soul needs us to love and nurture it well... she is another of God's children "on loan" and all 100% blessing.
I will speak with cynicism and hopelessness and tell them that they really can't stay, because I can't raise a child while hanging out with them. Furthermore, I can't honor the love for two people, now gone, by lending time and energy to these self-serving predators I meet the dark. Of course, I can't not have dark moments. That's not in my power. Again, I'm human and believe me, it is our innate tendency, like a moth to a black hole. Then mix Grief into your life. But, thank God as humans we can keep trying to hold our grip on Love, and by the Grace of God, we won't ever loose that opportunity.
So, yes, eventually, somehow I'll settle the crazy person in me screaming (maybe she'll just wear herself out). Eventually, I'll even probably get tired of the dark.
In time. With effort. Grace from God, deep breaths, and Time.
Dream within a Dream
- E. A. Poe
And, in parting from you now,
Thus much let me avow-
You are not wrong, who deem
That my days have been a dream;
Yet if hope has flown away
In a night, or in a day,
In a vision, or in none,
Is it therefore the less gone?
All that we see or seem
Is but a dream within a dream.
I stand amid the roar
Of a surf-tormented shore,
And I hold within my hand
Grains of the golden sand-
How few! yet how they creep
Through my fingers to the deep,
While I weep- while I weep!
O God! can I not grasp
Them with a tighter clasp?
O God! can I not save
One from the pitiless wave?
Is all that we see or seem
But a dream within a dream?
(It is weird to me now that I memorized this poem back in high school, on my own volition. Something about it, I really felt I "got it" back then. If only that were true. Oh for a simpler mind.)
Grief is a tidal wave that over takes you,
smashes down upon you with unimaginable force,
sweeps you up into its darkness,
where you tumble and crash against unidentifiable surfaces,
only to be thrown out on an unknown beach, bruised, reshaped...
Grief will make a new person out of you,
if it doesn't kill you in the making.
- Stephanie Ericsson
Yes. I'm just letting music and lyrics (that don't honestly relate based on what the writer was probably thinking) but, they relate ...
May 14th post... I found this in my drafts. I guess I intended to sit on it and edit it or wait and see about posting it...anyway, I'm p...
The nurses decorate Gwenyth's bed. We found this after the first night. Last night around midnight we got to hold Gwen for about an h...