Sunday, December 26, 2010

Bless all the dear children...and take us to heaven to live with Thee there

I do love the symbolism of Middle Ages Art...stories within stories - rich and deep with meaning as they are in saturated colors. This has always been one of my favorites:

The Adoration of the Magi
Fra Angelico, Fra Filippo Lippi, 1440 -- 1460, National Gallery of Art, Washington, DC

I know, for sure, in Gwen's short, little life, she heard a peacock. I had never heard one before. Of course, I've seen them before - but one day with Gwen, we both shared something new. While at the zoo with Lil and my tiny Gwen (safe and snug in the baby wrap) out came a peacock and opened his mouth and shouted an awful sound. The bird, truthfully is, like so many birds, when you really pay attention, honestly an astonishing feast for the eyes. But as for acoustics, well, it leaves quite a irony of characteristics. In any event, Gwen, for sure, heard a peacock in her lifetime.

Peacocks once stood as a symbol for Christ and His promise of Forever - of healing of the broken world. I'll take this symbol of old, as a reminder of all that Christmas means...that although we live in the sad part of the story now (all of us do - Gwen and all our losses this year only cause us to live it more acutely now), that because of the Good thing that happened by and through a loving God, separation is not forever. I'll remember a peacock spoke to us (shouted?) and perhaps that is no small thing, and I'll try to know and Believe all is well, Ultimately, as I reflect on the what the peacock stood for in paintings such as this.

And even so, we miss our little one, and our sister and our brother - and even so - here, we are okay, but lonely for each one, and that is just how it is, loneliness now, here for those we loved. Our heart still searches for and wonders why our eyes haven't laid eyes on them in so long. Yet, sadness can be carried and you can tug it all along, and we do...that's what we do now. That is the "new normal", for us, if you are wondering. But don't get me wrong, we carry them all with Love.


Away in a manger,
No crib for His bed
The little Lord Jesus
Laid down His sweet head

The stars in the bright sky
Looked down where He lay
The little Lord Jesus
Asleep on the hay

The cattle are lowing
The poor Baby wakes
But little Lord Jesus
No crying He makes

I love Thee, Lord Jesus
Look down from the sky
And stay by my side,
'Til morning is nigh.

Be near me, Lord Jesus,
I ask Thee to stay
Close by me forever
And love me I pray

Bless all the dear children
In Thy tender care
And take us to heaven
To live with Thee there
(thank you to Sawyer's mommy for the lovely idea of posting this Christmas song on her blog with the particular picture she choose as she misses her little Sawyer... I was inspired even as I thought I might just stay quiet for Christmastime. Love to Michelle and all the "BLM's" out there...)

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.

Thursday, October 7, 2010

Big Day for the Wolves

I am surprised how heavy this feels to me this week. I really do want this behind me. And yet I want to never have this meeting.

Part of me envisions us being led to a table where three doctors are sitting, waiting. The room is quiet and serious. I see them fold their hands over their blank note pads. All three have their eyes fixed on my husband and I.

The lead doctor will open the meeting, pointedly asking us, while peering over her glasses with a demur expression, "how did you not know how sick this child was and why didn't you bring her in sooner?"

The other doctors will tilt and nod their heads up and down penetrating our souls with damming eyes..... she will explain that they could have done something.... that Gwen could be here now, if only we had...

They pick up their pens and listen for our words as we shuffle around trying to explain our defenseless position. But we end up with only sobs and saying over and over..."we know...we know...we know...we failed her."

In another place we walk in and there she is - and they are stunned again - at how well she is doing.

I know - I don't even let myself go there- I know it is a short trip to insanity... I know...

I do have another scenario - one where they admit to doctor error. Watching the doctors that day, even the supposed best of the best, "the pediatric helicopter team" did not foster an ounce of confidence in me. But, what parent whose child had open heart surgery just two month earlier can easily trust nurses and doctors who had never laid hands on their child? And, of course, what parent whose child dies on the doctors watch is able to have a fair view of the doctors.


We left the hospital. That fact remains an open wound. Ugly open wound. We were not there. Her heart stopped. It was a phone call and two long red lights... then, what we had to witness when we finally made it to her side... as they continued to try, in complete desperation, on her tiny body... to make her alive again. In total it was 30 minuets they tried. I don't recall for how long we were there - maybe 10 -15. I don't know. I know for sure, we knew when we arrived... the walls were clearly written couldn't miss it... I tried to not see... I tried to believe the doctors were wiser than I...


We should never have left. We were so used to being at CHOP where we eventually had to leave her in the care of her doctors each night. This situation was so different, no doubt, but we had left her before so we were "used to it" the "motion" was familiar - how in God's name we didn't think about the HUGE difference in the situation (another wound or self-inflicted non-healing one as I repeatedly kick myself for that lack of understanding the situation.).

I know now, from the preliminary results, from our meeting with our pediatrician back in June, that they would not have let us leave to pack so we could be at UVA when the helicopter landed - they would not have let us leave if they thought for a moment she was not going to make it onto the helicopter. But even so - we should not have left.

I had the absolutely wrong idea (I now realize I made an assumption - no one actually said she was "ready" to get on the helicopter. She wasn't. They were still trying to get lines in had fallen out or wasn't good or something - I didn't know that until my meeting in June... they had been sticking the heck out of my baby and they apparently weren't done. I wasn't aware. From where I was, outside the room, I could not see anything. WHY did I leave without seeing them wheeling her out the door and knowing the next place she was going to go was onto the helicopter (which parents were forbidden to ride on - which is why we wanted to go home, talk to the sitter and grab what we needed to become hospital parents asap and get on the road).


This meeting tomorrow won't close a door. That is the problem when a child leaves a parent. The door is always open. And beyond that door is a giant empty house... dark. Sometimes you go in a memories comfort - other times you visit to cry...because it feel like it will take a lifetime to cry enough (and why shouldn't it, we were going to love them all our life... and this is what it looks like from here... it is still love, but not the side of love that you want to find in your life.)

But it is the next part of what happens in our parenting of Gwen. So tomorrow we will be there.

I'm afraid because of my weird lack of brain power (seriously - I feel like what a computer must feel like when it runs low on RAM) that I'm going to forget my questions and not get everything answered (everything that won't help anyway...but I need answered).

So, for now, just for what it is worth - I'm going to get it out onto the blog. I have no idea how much of the story I've placed here already... of That Day... and now it is so far from the day that I have forgotten details, it is not what I hoped it would be. But here it is. It is what it is at this point in time.


We knew she seemed different on Thursday night. She spit up after a normal amount of nursing - something she never did. Three times. Once and then later twice very close together. It looked a little different - clear - not anything like I was used to seeing with her or Lil. And after the third time she was gray and she was sucking in her breathing for a little bit after. We freaked. We scrambled - it was 9:00 at night and it was Lil's bedtime. We called an emergency room pediatrician friend. We observed her and I explained my concern about her diapers not being as wet. She had no fever and her breathing seemed to return to normal (no sucking in, no ribs showing). She didn't stay gray - we had trouble discerning if her color returned to pink...we looked at her tongue, something he advised. It was pink as far as we could tell. With no other clear symptoms it seemed it was just the spit-up which could cause weird breathing and color change for a little while after.

I knew she hadn't pooped as much as she should. But she did poop that evening, Myers reported. So, we assumed that was resolved. She did not pee as much on Weds. night - I noticed her diaper was really too light. Way too light. But I didn't know what to make of it expect to really watch her. By Friday morning however, I knew something was weird - her appetite was off - I had to remind her to nurse. Her diaper was again, far too light. I called the pediatrician and left a message for them to call me when they opened.

We weren't worried sick. If anything, there was concern about her heart. I didn't think about infection because she didn't have a fever. The good and bad news about heart issues in her case, is that it tends to be slow - so we would have time to "catch it" and then administer the help she needed. I, though worried and hoping it was nothing, thought we may be seeing something going wrong with her heart...

They had not called by the time Myers left for work. About 9:00 a.m. She had spit up again, that morning, before he left. We cleaned her up and sat down with her together on the couch. She smiled at Myers - gazed at his goatee, listened to his voice and smiled. I tried to get in on it. It was really sweet. It was her first real smile. She had "lit up" a little before, you know, the bright eyes that babies do before they figure out how to put on a smile... but this was a little grin. I was so excited - soon we'd have a smiling Gwen- after all she had been through - we were going to see her smile.

In any event, he left and I waited. I just really wanted to talk to the doctors to know what they thought (thinking they'd say I'm a jumpy heart mommy). She spit up again after he left, really gagged it out..and there wasn't much to get out by then. That was troublesome. Then she did it again and the last bit was yellow. I freaked and got on the phone with my doctor. We got a sitter for Lil and went straight in. We still were not thinking anything beyond a bump in the road, a set back, a hospital stay IF that.

Our pediatrician and the nurse checked her breathing on their watch. No one said anything except they just wanted to run some tests to rule things check fluid in the lungs. She was going to the hospital to receive a tiny amount of fluids, get an x-ray of her lungs and an EKG. They did a rectal temperature and confirmed that she indeed was not running a fever.

Short version: her lungs were fine. Her blood pressure concerned them enough to contact UVA. It wasn't alarming, but there was a bit of spread, the lower number being something a little too low for my pediatrician's comfort. I believe from then on my doctor worked with a NICU peditrion at UVA (I don't know if ever a cardiologist was on board). They drew blood (but had lot's of trouble getting good access... this was all very, very hard to witness). I have trouble with the details from here on out. At some point, while on the phone with a friend about babysitting, while she was trying to help me and explain that this was out of their league and that is why they called UVA and that she'll be okay... Myers called me over to her, she was different. She hadn't been normal all through this, but she hadn't been super lethargic either. Now she looked and acted ill. She was cold. She was really cold. They got a warm blanket and I held her (at last I could, they were done with thier poking and prodding). I tried to nurse.

I can't go there now.

I'm done with this.


I held her as long as I felt was socially acceptable while good friends and our pastor made sure we were not left alone in that room. We did not have to hand her over to doctors or nursers. Her surrogate grandfather kindly asked for the honor of holding her while we left.

He smiled with his confident smile... proud to be holding an angel, sure of the perfectness that she was just begging to feel envelope her... (thank you Mike. What you did that day... you gave me one small moment of goodness in the worst day of my life. And it was the most huge moment of that day... I didn't have to leave her in the arms of strangers. I didn't know how I could ever, ever just stand up and walk away from her - I am so blessed - she is so blessed -for your care - because I can still see that now - and I can't fathom how it would feel to see her anywhere else in any other way as my last, my very last vision and sight of my dear Gwen.


Two hours later Marie would leave us too. We didn't learn of it until much later that night. That moment -- that day... We humans, at least Myers and I - we wouldn't trade a second we had with either of them - but there is no pain like what that day handed to us... and our human skin is so weak, our hearts -- I know we are supposed to feel this way - or we wouldn't have loved them as much - love wouldn't be what it is (true actual selfless love not romantic love, but that automatic love that is just wired into your heart).


Did we have more days with each of them than we did this one day in hell? YES. Do those memories eventually win - as in are they what I will work to focus on? Yes. But, there is magnitude here that I'm at mercy to. I'd give anything and do anything if it would ease what it feels like. But I don't know any way to slip out of my humanity. So, this is what it feels like to be human and lose your child named Gwen. To loose a sister named Marie.


I also think it is important to just say it here at least once to be clear - that I have no regrets...and believe me, I'm a giant mess these days. BUT NO REGRETS.

I know what love is now. And it is the strongest fiber of humanity (in terms of impact). Aren't we the only creature that cries? It is our humanity - the fact that we are made to love that tears will come - thank God we have a way to express our love in the times when it is the cause of deep pain. Thank GOD we have tears. Thank God we CAN be as sad as it feels in this place. That is how I can handle this... because I'm capable of being just exactly as horribly sad as I NEED to be... (not want, not want, not want).

It is not Suffering because of Grief that life is about - it is Grief because of LOVE - and believe me - I wouldn't have it any other way.

Yes. We learned she had a heard condition. But termination was never an option we would have considered; I was the guardian of her life, how ever long her little soul could enchant us with her presence. She was our second child and we wanted to have her with us as long as we could. What parent wouldn't?

God or no God (I say that to make the appeal to those who don't share the same perspective and think it is only some kind of religious fervor that made me "choose" HOPE) - there was a LIFE inside me that I was responsible for... so long as she fought and survived, as long as that heart was beating, how could I do anything less than support her every step of the way?

I couldn't believe she could be 20 weeks along with heart defect (that is how little I understood CHD). At 20 weeks, babies are pretty much fully done, they just grow bigger and their lungs mature for the most part from then on. She was well on her way. How could I pull the plug on her and say, "nah, that' too hard for me to bear?" Later, I was informed that even inside me, even with the placenta "doing all the work" a Truncs baby with two leaky valves didn't stand much of a chance to even be born.

I am fortunate that at UVA where they did the level 2 or 3 ultrasound (or whatever it was)- they didn't open that "option" up to me. But I asked, because I wanted to know - do some people - terminate upon this diagnoses. And yes... some people do... (I'm not judging here, but I wanted a completely full picture at the time).

That has left me acutely aware that some people think I chose this grief.. And to that I say - it wasn't a choice. Not in my mind. There was HOPE. How do you NOT choose that?

How do you take that "chance" away from a child, any child, much less my own -the one I'm entrusted with?

If I had only gotten to look in her eyes once, it would have still been worth it to HOPE her along to breath her first breath.

You risk heart-ache of this kind when you have children. I know that. Sometimes, you loose - and you have to walk away from your child, while a dear friend holds her - It was worth it.

But I'm human. She was our child. She didn't make it. We risked everything, and now we have to learn to stand up again. It is hell. But, it was worth it all - we'll work through slowly, slowly - knowing and wishing all the while, it could have been different and it was worth it, because we know, it didn't have to end up this way....

As for tomorrow, I don't know what my questions are anymore. I don't know if it matters. Nothing will fix this pain. Nothing will fill this void. Nothing will change the results.

We know from preliminary results it wasn't her heart... and we know she is gone.

Tomorrow is the big day you never, ever, ever, want to have in your life as a parent. And, we are not pillars of strength as we head forward to it. It feels like we are walking to the wolves with our heart in our hands (thank you to everyone who is praying for our hearts tomorrow... thank you)

Tuesday, August 31, 2010

Heart Walk in Gwen's Honor

(Thank you Rob and Kelly)

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)."

More Details

(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

Sky-Full of Faith

Baby loss. Child loss. Only those who have stepped into this place, know. It is the worst way and "place" to meet others, because you never want anyone to feel this...

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 (Veni, Creator Spiritus)
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

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

For Marie

While at Tate, remembering her here.

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.

So, these are a few pictures and one video from last year and long ago. I'd put in-between stuff, but I'm here (at Tate) and it is a beautiful day and I shouldn't have Internet here anyway (really what is this world coming too!?)

But, this is for you Marie.
We miss you.

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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;

Then fill to me the parting glass,
Good night and joy be with you all.


(Text posted are the lyrics to "The Parting Glass," Irish Folk Song)

Friday, August 6, 2010

Circle Song

(With You I Will Always Be) by Jewel

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.

Whack to the Head

Grief. I don't want to talk about it here anymore. This blog should be about Gwenyth and (it feels all wrong typing this because I don't think of her as really gone yet) her Aunt Marie, whom for some reason, we also had to say goodbye to on the exact same day.

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

Take this kiss upon the brow!
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

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."

Sunday, June 20, 2010

Oh, the Love of a Daddy

When I was planning this post I was in the car thinking about making this Father's Day post. I was flipping radio stations and happened to catch this song that I had never heard before. I thought, at first, that it was perfect for Lil's web page.

"Heaven is the face of a little girl
With dark [blue] eyes
That disappear when she smiles.
Heaven is the place
Where she calls my name
Says, “Daddy please come play with me for awhile.”


I listened all the way through and I couldn't believe what the song actually was about. I was in awe that it just happened to come on, while flipping through the radio stations, when I was planning this post.

I don't know what to say, except, it was played for you that day, Myers. I'm glad I walk to our Gwenyth, with you. I miss her everyday for the rest of my life, with you, Myers.

"God, I know, it’s all of this and so much more,
But God, You know, that this is what I’m aching for.
God, you know, I just can’t see beyond the door.
So right now... "

"Heaven is the sound of her breathing deep,
Lying on my chest, falling fast asleep while I sing.
And Heaven is the weight of her in my arms,
Being there to keep her safe from harm while she dreams"

"But in my mind’s eye I can see a place
Where Your glory fills every empty space.
All the cancer is gone,
Every mouth is fed,
And there’s no one left in the orphans’ bed.
Every lonely heart finds their one true love,
And there’s no more goodbye,
And no more not enough,
And there’s no more enemy. "

"Heaven is a sweet, maple syrup kiss
And a thousand other little things I miss with her gone.
Heaven is the place where she takes my hand
And leads me to You "

So many people would tell us before Gwen was born that we were "chosen" to be her parents. It dawned on me in the last few weeks that I can see how that may have been true, because of who her father is. If she really only was going to be here for two months - then she she was given to a daddy who bonded and loved her from the get go. Newborns, lets face it, are all about their mommy, especially if they are nursing. If their Daddy wants to watch from a safe distance until they grow a little stronger, smile and begin to be more personable and interested in the rest of the world they wouldn't know the difference. Myers, he's not that kind of daddy. He jumps in with both feet, newborn on up.

He changed more diapers than me while she was in the hospital. I made him be the one to practice placing the "yellow pipe" to her tummy and he stepped up to the plate with no complaint. He is the reason she finally took to nursing. Myers pushed me to keep trying when I was discouraged enough to think all efforts a waste.

He is totally comfortable holding little babies and held her and talked to her as if she knew what he was saying. He even insisted that he could hold her the first part of the night until she woke to nurse (she slept on top of me every night.) Myers would whisk her away to dutifully burp her after she nursed (someone even told me that they wanted to hold her when they stopped by but Daddy took her to burp her before she could get the chance to ask...). He took her from me most mornings and let me rest while he held down the fort managing the demands and needs of Lil and Gwen with total confidence.

He talked about needing to look into buying a sling that was his size, so he could share in holding her all day, as she liked. He worked hard to sooth her in the back seat when she wasn't enjoying her car seat (he figured out she liked having her feet patted...) and worked over-time when "soothing" wasn't coming easily. Myers even went the extra mile to buy pink and purple pacifiers for Gwen so that we didn't accidentally give her Lil's paci and easily invite potentially threatening germs.

He was 100% involved and in love with Gwenyth, bonded and in love. She had many, many sweet "daddy moments." I miss those Gwen and Daddy moments.

Myers loved his Gwenyth Gumdrop, it was a sight to see, and he blesses us all with the "type" of Daddy he is; I'm grateful that Gwen had him.

p.s. I wish I didn't have the time to make this long post full of words and pictures.

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...