Monday, March 28, 2011

Jamie and Poppy...

While staying in the Ronald McDonald house - more specifically, while eating dinner there, I met two families.

Of one family, I only met the mother actually - her husband had to work during the week so it was all be on point and stay at the RMH. Her baby girls plight - it has never left my mind. I plan to try to track her down, and am kicking myself for not getting her contact info before I left. Her baby was not a "heart-baby" but was born with a life-threatening developmental problem and I just want to know how she is doing... and for her sake and all the stories I know, including ours -I feel compelled to stress again - healthy pregnancies, healthy babies, please don't take a them for granted.

The other family was from England. They traveled with a small group of families seeking revolutionary treatment at CHOP. Their children had a form of cancer that was taking their lives. This family that we got to know a little, had a baby named Poppy and a little boy named Jamie. It was Jamie, the sweetest little boy, with a big smile and sparkling blue eyes...who's life was on the line. I left without getting any contact info so I could keep up with them.

At last, however, I sat down and got cracking, determined to somehow get the Internet to lead me to them.

I found out, of course, after I dug them up on the internet - that a close "heart mom" friend has their blog linked to her even as I found it first by my own search I could have found it any time I wanted by actually looking more closely at my friends page. But, regardless their blog stopped being updated it didn't offer the good news I wanted.

Thankfully - with a daughter named "Poppy" and some other search words thrown in - well, I have my answer to this little boy and his family that I often think of; my answer to "please, God, let him be okay"

His story as of April 2, 2010:

"A FOUR-year-old boy desperately battling a virulent form of cancer is in the United States and on radiotherapy."

And January 1, 2011:
"The treatment has so far proved successful and, Jamie, who has a 17-month-old sister, Poppy, is officially cancer-free."

Some things are right with the world. Oh thank God!

Tuesday, March 22, 2011

Good Days for Newborns Ahead - but support from each state is needed

You never know.

You just never know. Believe me - we got lucky with Gwen. Twice.
The first time was at her 20 week ultrasound - her heart-defect could have very easily gone unnoticed. It happens frequently. Her next big hope would have been a simple "pulse-ox" test. It is, since Gwen was born, now recommended for all newborns by the U.S. Department of Health. It is currently up to each state to adopt the screening as standard. But you can always ask and insist they do it on your newborn. 

Our second bit of luck was that they found her blood disorder before it threatened her life. Being born at a Children's Hospital with the intention to open her chest and repair her heart - she got a complete blood work up to screen for any immune issues.

Well, I'm thrilled to learn today that for all babies (who btw already get a drop of blood taken to test for other treatable diseases), now babies have one more bit of Hope mixed into that drop of blood.

"UCSF doctors have developed a test that, using just a drop of blood taken within hours of a baby's birth, can determine whether that child has a rare but potentially fatal immune deficiency disorder.

'One of the most extraordinary things in early newborn screening is being able to address something immediately,' said Gail Margolis, chairwoman of the public affairs committee of the March of Dimes, which supports the newborn screening changes. 'In this case, a child could die from very serious infection. These kids, you wouldn't know there was anything wrong without screening.'

This is not what Gwen had but I can imagine this test would have exposed her complete lack of white blood cells. However, there is a little boy Gwen knows, if you will, who lost his life to this disease, named Bodie.  How did his family find out what Bodie died of? Not until Bodies little 7 month old brother, Brayden was diagnosed after falling ill to an infection. Brayden currently is battling this disease at Duke. Thank God it was diagnosed in time - however, it almost wasn't and right now it's a tough road for Brayden.

No doctor has a clue why it happened to us and to our child. Please know, your newborn is probably super healthy and as perfect as they look. I'm not trying to be alarmist, I really just want to share what I know, now that I'm here and pay such attention to this sort of thing- which is - how can we make sure all babies who appear healthy, who's parents are healthy like us, don't end up finding things out too late. 
I'm SO excited that since Gwen was born and celebrated her first birthday - big advancements in Hope have occured. Please, dont' scoff at these, don't say it's over-testing, or think for a moment it is putting your new baby through anything unecessary. Instead, know about these things and ask for these tests by name - and help make this routine. 
"Every newborn in the state is pricked by a needle hours after birth, and a blood test is sent to a lab to screen for more than two dozen types of diseases, including sickle cell anemia and phenylketonuria, or PKU, a metabolic disorder that can cause mental disabilities and seizures if left untreated....The screening tests cost about $100 per baby, and are almost always covered by insurance or Medi-Cal. The SCID test would add another few dollar.

...doctors are trying to get the blood test added to the state's newborn screening program, a move that will require legislative approval. Legislation was introduced last month by Assemblyman Richard Pan, D-Sacramento, and a vote is expected this summer.

Some other states are getting on board, and they may be doing it kicking and screaming, because they don't have an extra dime to spend. But it's so important from a medical point of view"

Thursday, March 17, 2011

How can I keep from singing?

Thank you to everyone who shared the memory of Gwenyth with us today.

I feel stronger today than I have in a long time. Today is her day - and I look forward to it every year. There was something today that I can't explain. I felt nothing but full and good.

Today I learned that it is easy, for me, to celebrate Gwenyth. I kept things simple - doable and simple. Plain even. But in every way it was perfect.  The warm sun helped - it was a perfect day (even if a little muddy) at the arboretum, where her tree is planted.  I thought of all the gaping holes in the hearts...and the anniversaries ahead, I did. But, it was okay for today. Somehow I felt surrounded by those here and those I miss...everyone, not just this year's losses - but all of whom I suppose are with Gwen, somehow some way.

And perhaps too, today's goodness proves that the memories, though hard, are that good. And all the time spent getting the videos up (and working) - well, it hurt but I feel good too, to see her again.

Several friends shared their memories of today too, my dolua Nicole wrote for Gwen's birthday, my mom and I talked a little about this day one year ago, family all let us know she is in their hearts... lots of good memories today and not just mine - and that's not missed on me - awful things may happen but so much Love is out there, and it wins.

So yes. Today was filled with Grace and simplicity and answered prayers.

A small handful of friends met me at the Arboretum. Lots of kids running around getting muddy to the point where shoes were just useless to wear. Catching turtles was the main event for the older kids. Lillian loved to put her stick in the water to get wet leaves (fish). Three sweet babies who would have been Gwen's buddies enjoyed the taste of a Spring-like day. Lil played for a moment with a little boy who is very close to Gwen's age. I loved that. I lured the kids to Gwen's tree with lollipops and told them to say "Happy Birthday" to Gwentyh. They misunderstood and sang it. Even better.   

A HUGE length of friends and family shared Gwen with me today in one way or another -facebook, cards, phone messages, a video chat even-- - thank you -- and, I can't help it...that phrase just seems so old and over-used. It feels so weak to what I want to say.

I wish there was something else to say. Maybe if I just explain that honestly, by the early evening I noticed the chours "how can I keep from singing?" in my head. With all the family and friends - new and those who've known me forever - to see this kind of net -in a year when I feel as if I've been more distant and unresponsive than usual (I have no illusions, I'm terrible at correspondence)... to see people from every corner of my life showing Love and Care for Gwen - and to remember all the care that was there for Gwen a year ago- what do you do with that?

It's honestly a bit uncomfortable to be on the receiving end - except, it is for Gwen, so it's okay...I'm just the only one who is here to accept all this outpouring of love and care on her behalf.

A tiny pizza dinner with two friends and their kids ended the day. We toasted at the time she was born.  I iced my funny pink clover cake. And life went on... and we just had a good evening.

Lillian called me into her room while I was typing this. In a frantic tone she asked where her flower was..."my flower to remember Gwenyth?" I thought she was referring to a flower she gave me at the aboretum that suddenly now she remembered and decided it was a "memory thing", suspicious that she was trying to make the cause more desperate.  I told her it was in my purse and I'd go put it in water. "No" she said. "This one is pink and small..." Well she often gets pink and purple mixed I tried agin to tell her I had it, the flower she gave me was purple, she must have meant to say purple. She was sure that wasn't the flower...that she had just had it with her. It turns out she found a little flower that had fallen off a her dress-up fairy crown or something and she decided it was to remember Gwenyth and that she would hold it in her hand tonight when she went to sleep. Daddy had put her to bed so I missed that detail.

We found the little flower. She snuggled up with it in her hand. In a way it was like my two little girls were together tointe.

That Lillian. Happy little girl.

Happy Birthday Gwenyth - your big sister loves you!


My cup runneth over.

How can I keep from singing?


  My life goes on in endless song:

Above earth's lamentation,
I catch the sweet, tho' far-off hymn
That hails a new creation.
Through all the tumult and the strife
I hear the music ringing;
It finds an echo in my soul--
How can I keep from singing?
What tho' my joys and comfort die?
The Lord my Saviour liveth;
What tho' the darkness gather round?
Songs in the night he giveth.
No storm can shake my inmost calm,
While to that refuge clinging;
Since Christ is Lord of heaven and earth,
How can I keep from singing?
I lift my eyes; the cloud grows thin;
I see the blue above it;
And day by day this pathway smooths,
Since first I learned to love it.
The peace of Christ makes fresh my heart,
A fountain ever springing;
All things are mine since I am his--
How can I keep from singing?
( correction form when I first posted this...This version is sung by one of my favorites, Judy Collins. Enya's also sings this slightly different version...
which I like too.  I don't know how to put music up here. But you can get these for a buck on Amazon.)
My life goes on in endless song,
above earth's lamentation.
I hear the real, though far-off hymn,
that hails the new creation.

Above the tumult and the strife,
I hear the music ringing,
It sounds an echo in my soul,
How can I keep from singing?

What though the tempest loudly roars,
I hear the truth, it liveth,
What though the darkness 'round me close,
songs in the night it giveth.

No storm can shake my inmost calm,
while to that rock I'm clinging;
Since Love is Lord of heaven and earth,
How can I keep from singing?

When tyrants tremble sick with fear,
and hear their death knell ringing;
when friends rejoice both far and near,
how can I keep from singing?

In prison cell and dungeon pile
our thoughts to them are winging,
when friends by shame are undefiled;
How can I keep from singing.

My life goes on in endless sing,
above earth's lamentation,
I hear the real, though far off hymn,
that hails the new creation.

Above the tumult and the strife
I hear the music ringing;
It sounds an echo in my soul
How can I keep from singing?

Happy Birthday Little Girl, our Gwenyth Gumdrop.

March 17th a year ago, was such a good day. At 7:15 p.m. our little Gwenyth was born!

However, until she was born, we didn’t know what to expect...

So many people were praying for Gwenyth that day.

One person was her Aunt Marie;

     From Facebook: March 17 at 3:27pm; 
    Marie Carpenter; Gwenyth, I want you to live and be as healthy as a baby girl can be. We already 
   love you too much.”

Earlier that day sweet Aunt Marie video-chatted with Lillian. (Thank you Becca for taking this picture :) I treasure it.)

It was a good day.

Moving to Philly
My mother-in-law and Aunt Sarah came to Virginia see us off. They helped us pack up for our temporary move. Gwen’s Grammy (my mom) and her Aunt Becca and my mother, moved to Philadelphia with us to help us care for Lil and Gwen - as we just couldn’t imagine how were were going to work things out, so far from home and split down the middle between our two girls....

Thank you all. For everything.

Philadelphia Living
The days in Philly before she was born were actually really good - I know there was so much uncertainty, our apartment was tiny, I had doctors appointments and all that...but all I recall are just good things. I love my memories from that sweet little time...

One little moment is here on Lil's blog.

I remember walking the streets of Philadelphia with my mother. The weather was so warm, the daffodils were blooming. We loved our little apartment and walking to the store, one of our favorites being Whole Foods. I remember turning the corner and there in front of us was a small St. Patrick's Day parade. Just a tiny group, dressed in their kilts and it was just getting started. It was so random and so fun.

I know little Gwenyth heard the sound of St. Patrick’s Day being celebrated. It was maybe two, three days before she was born - I’m not sure. But, she must have been able to register those loud pipes on some level. She is a tiny bit Irish - I’m half meself. So I'd like to think she did hear, in her life, some good ole’ bag pipes. Especially since on or around her birthday, ever year, we can be sure to hear some bag pipes. I’m glad to have a this sweet moment, this special Gwen memory associated with the sounds of St. Patrick's Day.

And, a of course, year ago today, will always be my best St. Patrick's day memory, the day Gwen was born!
Happy 1st Birthday little Gwenyth!

I remember how amazed I was to hold you in my arms. Your wide eyes. 

“I thank you God for this most amazing day; for the leaping greenly spirits of trees and for the blue dream of sky and for everything which is natural, which is infinite, with is yes.”
- E. E. Cummings

We didn’t know if you’d make it to birth, much less get to hold you even for a moment soon after. You were my “Yes” that day, one year ago. I’m thankful for the good memories I have of your birthday.

(this was right before we walked you down the hall for surgery)

I wanted to keep you forever. I’m trusting I still have you forever, even as it is surely not as I dreamed or wished or prayed. Oh me of little Faith - but for you, anything. To reunite and feel whole again. “Faith is not faith until it’s all you’re holding onto” ... and it is, all I hold now, of you. And memories. Looking forward, looking back... Hoping on Hope.

Your first birthday without you is hard.

Lillian Carries you in her Heart
Your sister has been busy in the last few weeks. She made an angel for you out of bristle blocks, she made a butterfly tower to remember you out of magna-blocks, and she received a box full of cotton balls from a sweet friend who knew the cotton ball story. That story is when Lil picked up a cotton ball one day fairly recently and told me, very excitedly, that she found one of your things. She was remembering the cotton balls I used when I gave you a bath. She said, “let’s throw cotton balls to remember Gwenyth.”

She has collected flowers for you, and drawn pictures of you, and she even asked me the other day if unicorns remind me of you. I had to be honest, no. There was no association. I asked her if unicorns remind her of you and she said “yes, because they’re so beauuuuuitful.”

She’s made cakes for you out of play-dough, dirt, and even bubbles (Aunt Marie must of loved that one : ) ). So often pretends to be “baby Gwenyth” - you’ve practiced saying Lillian’s name, you’ve learned to walk,  you’ve cuddled and laughed... Oh the crazy, sweet-adorableness of your big sister...I love it.

But know, that two little girls would never have been too many. I watch her and soak her sweetness in, I thank God for her, but why wouldn’t I want to know more of my other daughter too? So often I wonder, just what you’d be like. “To Love is to want,” as Mary Oliver writes. I love you. I will always want you here with me...but that is how it is. No parent ever just moves on and away from their child gone. 

“There is a sacredness in tears.
  They are not the mark of weakness,
  but of power.
  They speak more eloquently than ten thousand tongues.
  They are messengers of overwhelming grief...and unspeakable love.” - Washington Irving

It’s a quote I read sometime ago after I lost Gwen. It is perfect. I read it again recently, it was sent with the box of cotton balls... and I knew this person understood exactly - and thank you for that, Angie.

That’s all any of this is...any of my weakest moments, my tears that rise up sometimes so easily, my heart feeling constantly squeezed - it’s Love. Grief is not about sadness and sorrow - it is about Love. It is a type of Love. For Gwen, this is the “type” of Love I’ll always have.

Remembering Gwenyth with pictures & videos

Below is a paraphrasing of Nichola Wolterstorff from is book, “Lament for a Son” - his words are absolute perfection:

 ---- She is gone now, and, at that end we must now learn to live as faithfully and authentically with her gone as we had tried to do with her present... Her life was a gift. Surely then we are to hold it in remembrance -to resist amnesia to renounce oblivion...We will not turn the photos. We will put them where they confront us. This as a remembrance, as a memorial. ---

These videos are physically hard for me to watch. Every fiber of my soul, every cell in my body tries to pull out and get to her. I ache in feeling so powerless, only to be able to sit and watch lights and pixels on a screen show a vague glimpse of her sweet little person...

But in all that I’m desperately glad to have them and wish only that there were more. I don’t want to forget a thing about her. And, I know so many people - so many who loved her in our family, so many who prayed for her and found room in their heart to love her, they never got to meet her... so here she is.... my sweet little second child.

The day you were born, Gwenyth:

 It was early Friday morning when they wheeled you down to the operating room. You were born the Wednesday before, in the evening. You were not yet two full-days old...

By March 24th you were amazing us all with your recovery. I think you were just starting to be fed breast milk into your tummy, at last. I remember you shaking and wanting to have your tummy filled so badly. It broke my heart.

Holding you close...Kangaroo care style. One of the sweetest moments ever.

Daddy holds you and tells all about your day.

A short moment from typical day with my two girls
(I remember how good it felt, two little girls at home)... 

These are just a few videos, we have others but I can’t get to them yet...they are from another camera, currently on another computer... I long to have everything all in one place. But there is nothing but time for we’ll be loving her as much tomorrow as today, and I’ll be just as excited to post those videos.

------My Tribute to Gwenyth------
Finally here is my tribute to Gwenyth. I introduced it a little yesterday - here is part two. It’s incomplete, but it’s something. Read on, further down and you’ll see more specifically what I’m talking about. I hope you’ll join me in distributing gifts in her memory.

“He who desires to see the Living God face to face should seek him not in the empty firmament of his mind but in human Love.”

Dostoevski quotation from the Brothers Karamazov

Human Love is totally imperfect and a mess, but it is the Living God as close as we can get. Fragile and imperfect. So imperfect. But deep and unending. And I stand on the edge of Love here, when I “spend time with Gwen” thinking of her, Hope is the only thing I love her from, afar?

I see the darkness in my life as truly, the “empty firmament” of my own mind. It’s real. However, it’s empty. It has nothing to offer, it doesn’t reply. It is quiet, but powerful. Things seen in the dark don’t take their proper form, you can’t trust anything you see there. But it’s easy to get confused and misled.

Only one thing is actually seen more clearly than ever in the dark, unmistakable, if only a tiny speck a zillions of miles away - and that is light.

I’m sad. I always will be in these losses. But I do see all the light, the love and the care and not just towards me, but I’ve witnessed the amazing women in the CHD world and the baby-loss world who have pulled together something to help another who finds themselves in that place they know too well. That kind of light, of action while living the “question” of why - I’m in awe. 

The world that Gwen opened up to me is now the world to which I hope to help bring light, care, attention and hearts.

You do have to be willing to let your heart break, you have to look at tragedy and uncomfortable things over here - but if you do, I think that is actually a place where you will find compassion leaking out.

So please, carry Gwen’s moment with me, by knowing she is not the only one - she is a tiny part of a big story.
The question lingers, “Why” but the real question is “What.” I read something the other day about a Priest who explained perfectly, “The question is not why, but what can I do?” That idea has been on my mind and he nailed it - he put it so well.

All the care and compassion from so many, I hope to keep flowing forward, to keep Gwen’s life a blessing and as my way of saying “thanks.”

So my “Gwen assigned” job is to answer the question, “what can you do” for this little corner of the world. But more so, please, do something for some corner of the world, it is so true, the old adage, nothing is too small, do something.  Don’t get stuck in the “empty firmament” of your own mind.

I’ve put together a check list for myself. Please join me in celebrating little Gwenyth and see if you can knock off everything on this list, or even just one item.

That is how you can help me, and how you can help the world I know of...

I’ve created a separate page for the list. It really is the tip of the iceberg for now, but it’s a start. In most cases I can speak first-hand of each organizations effectiveness, each “task” of its impact. 

There’s lots of gratitude and care to pass around, so yes, cry with me (I appreciate that kind of realness I’m not going to pretend to be stoic) but please help me too... and have fun and  - thank you for celebrating her with me in this way!

Click here to see my Gifts of Gratitude list.

Gwenyth. We love you. Happy 1st Birthday. Wish you were here.

My Morning Post for Gwen's Birthday

I bought two cards that just seem perfect for Gwenyth (I’m a nut). But I couldn’t not buy them. So I made a little collage:

(the card above reads:)
"Your're a darlin' wee baby, 
a charmin' wee child,
and your smile is a joy to behold.
You're loved very much
and here's hoping you know
you're more precious 
than leprechaun gold!"

Today we'll be out in the sun, near her tree, celebrating Gwenyth, and thinking of four leaf clovers - and Love, Faith, Hope and Grace. Yes, the fourth leaf is supposed to represent luck, but I don't believe in luck... :) 
"You can have the other words-chance, luck, coincidence, serendipity. I'll take grace. I don't know what it is exactly, but I'll take it. " - Mary Oliver

Wednesday, March 16, 2011

"always, forever and ever" - Lil


To come full circle.

One of my favorite books, back when I actually used to read is, Brothers Karamazov. I read this for a college literature class titled something like “Evil in Literature” - we studied theodicies, literature that wrangles with the “question” of “why a loving God would allow evil in the world...”

While hoping to find just the “right” thing say today, to lead into Gwen’s birthday tomorrow, while thinking just how to “present” my post to honor her birthday, I found myself full circle, back to Karamazov. In a random sort of fashion I stumbled upon something that is perfect. Here it is, word for word what I’ve come to know this year:

“He who desires to see the Living God face to face should seek him not in the empty firmament of his mind but in human Love.”

Dostoevski quotation from the Brothers Karamazov


I’ll leave that for there for now... Tomorrow I’ll put my full ramble. But that says it all. It’s both a observation of our life in the recent years as well as a challenge to me and to everyone I know.

It says it all. Gwenyth's life is about that.

Sweet Lillian, last year. So excited to be in Philly:

Sweet Lillian just the other excited to be the one who gets to remember Gwenyth;

Thursday, March 3, 2011

Maybe a pink clover cake

So I'm thinking of a clover cake. Probably just Myers and Lil and I. Maybe a balloon release.

It feels so strange to plan a birthday and she won't be here.

I never was good a planning birthday parties. So I'll stick to my rule; keep it simple.

Part of me just wants all this over. It just makes me more sad - and how is that possible?

Let's just skip this month.

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...