Thursday, November 18, 2010

A Blessing Even So (but I am not resigned to untouchble clouds)

I can't help but think - it was a year ago....two days before we left for the Thanksgiving holiday that we learned we were having a girl and that something was wrong with her sweet, tiny heart.

I remember how much time I spent trying to name our sweet Gwenyth... she didn't have a name at this point last year.

We went to our ultra-sound appointment, a year ago, with Lillian - we were so excited to see our baby and let Lillian join in on the occasion.

Upon learning something was wrong, we delayed our plans to leave town and went to UVA the following Monday for an echo-cardiogram. I was 20 weeks pregnant. In 17 weeks we would hold our Gwenyth. In 17 weeks we located the best place for her to be born, her surgeon, and our temporary home and marshaled our forces to help us with Lillian (thank you mom and Becca- thank you!).

To learn our baby was not okay stunned and crushed us. A year to this day, the Thursday before we left for Thanksgiving, God let us know how we could help our little girl - that horrible moment and day- was a blessing even so.

In the weeks that followed her diagnoses her prognoses to survive to birth was grim. But we learned at 20 weeks what she needed from us once she was born - so that she could have her heart repaired in one of the best hospitals in the world by one of the top surgeons, Dr. Spray. Had we not learned of her problem - we couldn't have done all that we did for her.

Every moment we had in our lives we carry in our hearts. I'm glad to have held her and known her even just the little bit that we did... I am.

One day, I'm promised, by others who've been here, the memories won't bring such pain, - and one day I hope to post the video from the moments and days after she was born (I haven't watched them is too hard). A tiny little girl, not yet six pounds, so alert and full of vigor, Gwen astonished the doctors with how well she recovered from her complex surgery. And yet a virus took her so quickly...

It is so hard. We are okay. And we will never be okay. It is just the way it is... you don't loose a child and ever feel okay about it... you learn to carry them "here, not-here"... Love and pain together. Separation is not what we were designed for - even as we may "get used" to this situation it will never be something we are okay with.

The care from every corner of my life is appreciated and felt - I re-read all the cards the other day - from when she was born to after - and we have new ones now - with our third complete heartbreak this year - and for all of that - we do thank every single person for their compassion and care and prayers upon prayers.

The pain of separation is the entire story of God - and I know that He is the Alpha and the Omega - but I also know our pain, here, is understood and that to us, is no small thing... we will be okay, but we will never be okay, here. However, I am acutely aware there are blessings everywhere here - and today I wanted to comment on our day, a year ago, because I am aware that we were given the gift of foresight and with that so much Hope for Gwenyth to live long and to thrive. For sure, we had two months to hold her here, and that is due in no small part, to having had time to create the best plan for her birth and surgery. There is plenty to be Thankful for in the midst of this fall-out and I'm not blind nor unappreciative.

A two-day old baby CAN have open-heart surgery and come through with flying colors! It can happen! It is AMAZING to see - it really is - and I never knew how many babies walk this path every single day. A virus can take down any two month old - it can take down a healthy 33 year old and wrestle with his life - both without any huge symptoms and no fever at the onset. It is a fallen world and so many horrible things happen - unthinkable accidents happen, suffering-minds overwhelm people.

I am so thankful that my brother fought viral encephalitis and lived. I'm thankful for every moment with Gwen. I'm thankful for every moment with my sister-in-law Marie. For all the times with my dear brother-in-law Winship (who in a two days will be gone to us for a month -my heart chokes on this detail. It cannot be so. I don't buy that at all yet).

May I truly be walking to them and in that, may my heart heal in accordance, with each closer step towards those lost to us here; - and my I always be Thankful to God for that reality.

"I will see you in the light of a thousand suns
I will hear you in the sound of the waves
I will know you when I come, as we all will come
Through the doors beyond the grave"
-Chapman Beth Nielsen

There you were, and it was like spring -
like the first fair water with the light on it,
hitting the eyes.
Why are we made the way we are made, that to love
is to want?
Well you are gone now, and this morning I have walked out
to the back shore,
to the ocean which, even if we think we have measured it,
has no final measure.
Sometimes you can see the great whales there,
breaching and playing.
Sometimes the swans linger just long enough
for us to be astonished.
Then they lift their wings, they become again
a part of the untouchable clouds.

- Mary Oliver

I am not resigned to the shutting away of loving hearts in the hard ground.
So it is, and so it will be, for so it has been, time out of mind:
Into the darkness they go, the wise and the lovely. Crowned
With lilies and with laurel they go; but I am not resigned.

Lovers and thinkers, into the earth with you.
Be one with the dull, the indiscriminate dust.
A fragment of what you felt, of what you knew,
A formula, a phrase remains, --- but the best is lost.

The answers quick & keen, the honest look, the laughter, the love,
They are gone. They have gone to feed the roses. Elegant and curled
Is the blossom. Fragrant is the blossom. I know. But I do not approve.
More precious was the light in your eyes than all the roses in the world.

Down, down, down into the darkness of the grave
Gently they go, the beautiful, the tender, the kind;
Quietly they go, the intelligent, the witty, the brave.
I know. But I do not approve. And I am not resigned.

-Edna St. Vincent Millay


So every day

So every day
I was surrounded by the beautiful crying forth
of the ideas of God,

one of which was you.

- Mary Oliver


Thursday, November 11, 2010

Loudly quiet in no-mans land


This blog is missing so much.

I haven't written about our meeting with the cardiologist in October about the "final report." I still haven't posted about the wonderful heart-walk results. I've wanted to tell of all the angels you've introduced me to - and their amazing mommies who have done wonderful acts of love in their angles name. I still have never really wrote with completeness about that day, May 14th, the day you left. I got stuck last time I tried to tell it all. And now, it seems pointless. What is to tell. You left. (Then Marie left?)

Yet. I can't not mention here that someone we love has left again before I ever get back to what this blog as I re-purposed it - a place where I didn't tell of the goings on inside my head regarding our double loss. Instead, I feel I must mention our third loss this year and the fact that I'm going to struggle forever to take comfort knowing you now have your Uncle Winship with you.

I haven't had words, yet I wandered over here, because I can't ignore this fact...and lament here that this blog has become a record of a horrible things - losses too huge really for us to step into fully - I write, yet I don't buy all that is here. Your sweet blog, Gwen, was supposed to be telling about your life and progress as a "CHD warrior." This little space on the Internet was not supposed to layout tragedy, upon tragedy, upon tragedy. Baby-loss, accidental death and bi-polar driven suicide.

Yet, it all happened. It now is a record that tells of three people gone to us.... Losing just you, Gwen, did us in and tore us up. Marie - I still don't fully accept you as gone. If I don't grieve you, you aren't gone yet, right? But how do we do this? How do we move into a new, new reality where someone left, and again, suddenly, dramatically and tragically?

My heart and head are clogged. I'm stunned into a place where I just push it all aside. Yet, the loud quietness of three people gone resounds.

It is too much to let go of yet, without choice given. So for now we exist, in our hearts, somewhere in between where we were and where we've been dropped. Our lives, right now, are no-mans land...even as we understand clearly, there is no choice into which place we are required to exist.

I watch the days - I live parallel to two people excited about their second child. Excited yet wondering just how we were going to do two kids... it seemed a bit daunting even as we were looking so forward to two children in our life.

I watch the days and see us one year ago - waiting for the 20 week ultrasound. Wondering if we would be welcoming a boy or a girl and planning to find out because we couldn't wait to know.

Who are those two people? I hardly recognize them.

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...