Everything changed. Then changed again.

We are back home in Virginia now. Last Tuesday we drove to Chattanooga for Marie's service. Today we drove back into our world.

I miss Maire. I feel the difference in the world without her. I hate the knowledge that I won't see her again, not here anyway.

I am glad for the siblings I and the cousins I have by marriage. I love the people that Lillian calls her Aunts and Uncles - each one of them I care for and love and each one I believe, is so important in Lil's life in their own way. I always thought she'd have them all for a long, long time. Marie. Marie. It feels so weird and wrong for you to not be here anymore. I'd like to say it will just take some getting used to, but that's just not the case. You are gone and we will always notice the feeling of you "not there."

As for being home. I ache. Myers aches. It's hard to describe it in words right now. I want to hold her again, my Gwen, and have my life, my world, everything that all just went away so fast - I just want it back. Lillian's needs will keep me focused. I'm clinging to God. I'm sustained by friends. I'm trying to walk forward but I am knee deep in pain and bewilderment. I want it to stop hurting.

There's song lyrics that say, "everything changed, then changed again" - I keep hearing that in my head... because that day, in a matter of two hours, that's what happened. Our world changed in the worst possible way all in an instant. Our hearts broke so hard and so fast. And then it happened again hours later when we heard the news of our sweet Marie.

Everything changed and this is how it is now.

A Beautiful Honor - Who Marie was and My Dream for Gwen.

Marie and Gwen connected me to an old friend from high school. We were only in touch very loosly through a common friend over the years. We knew we were both there but hadn't actually communicated in a long time. The other day she "friended" me on facebook without "saying" a word - she just "friended" me out of the blue. I felt her love, support and care and appreciated her taking the leap across distance and time to lend her heart. It did lift my spirit, it did bring comfort.

Today, through this new-old connection something beautiful is being done for my Gwen and sweet Marie.

I'm sharing part of our written conversation so I don't have to retype

Me to my friend:
"She [Marie] learned to surf while spending time in Brazil a few years back. I thought of you when I would talk with her about it. There must be something about people who surf and free and wild spirits - I always think of you that way and Marie was totally that "

She responded:
"Marie sounded full of life and I am sure if I ever met her we would have been great friends.
In surfing when someone passes we all gather and paddle out into the ocean, form a circle, put leis in the water to represent who has passed, hold hands and pray. My friends and I are planning on going out this Sat with 2 leis one for Marie and one for Gwen. "

My reply:
"That is SO awesome. I can't wait to share that with Myers and our families!!! That is so beautiful in so, so many ways - just the ceremony itself and the fact that I haven't talked to you in years and you pulled total strangers into doing something in their honor - wow - I love this....what you all are going to do!

I honestly had always hoped and envisioned my Gwen as a free spirit - tough, out-doorsy and maybe artsy - maybe a mountain climber or a surfer - and especially with her heart issue, she was going to keep amazing the doctors- I just had in my heart that even as her given name was so soft and lovely, Gwenyth - that her everyday name, Gwen - was who she was going to be. Maybe not. But that is what my heart told me. So your honor is so perfect - you honor my dream for Gwen and you honor my wild, crazy, fun awesome sister."

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As today they will be honored, here are some photos I thought I'd share.
Its always nice to have a face to a name:

Marie swimming at Tate

Marie with her oldest brother Myers, June 2001, Tate

Marie with Lillian August 2008

Marie with Lillian, July 2009

Marie (bottom right) and Family at the Tate House
(Marie would want you to laugh)

Marie with her nieces Lily-Kate and Charlotte
Summer 2009 at Tate

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Our Gwenyth, May 12, 2010

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Thank You, dear Lord, for these moments you gave us.
Thank You.

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Thank you for the love of family, friends and people I've never met.

Thank you Chrissea and those who honor Marie and Gwen today.
It is a beautiful honor.
It is lovely in my mind to see.

Thank you to everyone who is there for us - I read your words, I feel your care.
My aching heart has no choice but to feel this Love,
this amazing, breathtaking outpouring of Love,
and feel a bit eased and soothed.

Thank you. To see God's Love as it is magnified through each of you.
It is astounding.

It Wasn't Her Heart. Lighting Struck Twice?

My heart is so low. And dropped lower yesterday when we spoke to the cardiologist at UVA yesterday. This would have been the tiniest bit easier to swallow, the news of "what happened," if it had been her heart.

I know everyone keeps telling us it wasn't our fault. But now it looks like an infection. Again, we don't know. Won't know for some time...weeks maybe a month. We know her heart was working fine, the valves were intact. So the only thing left is infection.

They are still waiting for results of a "microscopic" analysis of the organs. But nothing pointed to an arrhythmia, nothing pointed to a heart attack. There could have been a clot, the doc. said, but she was just grasping at straws it sounded like. She seemed to be fully assured that the surgery, the fact that she had surgery and all else involved showed nothing wrong with the heart.

She did put out one possibility of some abnormality with her immune system that perhaps we didn't know about. For example, she had the problem at birth where her white blood cells were being attacked when they left the bone marrow. That was auto-immune and solved quickly with drugs. But, she proposed, what if they didn't work properly? It's far fetched because their wasn't anything "wrong" with the making of them in the bone marrow, her problem was auto-immune, so I think it is a stretch to add another new medical problem to her list. Faulty white cells and an auto-immune issue is far out there - but as you all know, stranger things have happened.

I asked the doctor could this have happened to any baby - had she not had the surgery and been just fine at birth that this still could have happened and the doctor said yes. So, basically we had a baby who over-came such hurdles and then we missed the signs she was sick, we took her out at least three times last week and exposed her to goodness knows what...I know God is in control but at the same time, it's impossible not to feel like I did something wrong because she was my baby. I miss her so much. All night long she is in my head. I know God will get us through, because we have to for Lillian. But it is hard and really painful and this news just twisted the knife. And it keeps twisting. Lighting struck my baby twice.

Two details I'm noticing. Lillian threw up on Saturday. She had swallowed some pool water and eaten pizza - and had to be stressed out under the circumstances she was trying to process. But then we learned two other people we had seen and been with last week were throwing up. The last few days her cousins have been throwing up - acting fine after, but throwing up just the same. So, is their a virus going around? Was Gwen the first to show symptoms?

Also, this...I gave her probiotics. Not regularly, not a lot at a time. But one day I recall giving her maybe three finger tips of powder. A small amount but more than usual because I had been so flakey about giving it to her. I thought it would help her tummy. I thought that it was as safe as sugar. I had never come across "side effects and risks" in my research and her pediatrician said it was okay to give it to her. But read here: http://www.medicinenet.com/probiotics/page4.htm - no one told us she had a weakened immune system...not exactly. We were told to keep her from sick people since heart babies were at huge risk for RSV. That if she were to get a cold she would end up in the hospital and needing oxygen to help her get over it. So, I knew to be careful about getting colds. We never had anyone sick at our house nor went anywhere where people were sick.

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Several months back I had never heard of viral encephalitis nor that a perfectly healthy person could be taken down hard and fast. My brother was the victim of this nightmare virus attack and we almost entered a harsh world of seeing a loved one live the rest of their life with no short term memory or worse. He surprised the doctors by coming out so fast and so well with no brain damage. He also didn't die. We praised God and held our loved ones closer. I was seven weeks pregnant at the time.

Fast forward to November 19th and we heard the words during our 20 week ultrasound "something wrong with the location and size of the heart and some of the arteries." I never knew this world of heart-defects existed - I just didn't know. Within a few months we learned how dire the diagnoses was; would our daughter be born? Beyond all the expectations of the doctors she arrived and underwent open-heart surgery and they solved her white blood cell issue. She was discharged after about three  weeks. She stunned the doctors with how well she was doing.

I have never known anyone who's baby died from an infection. I recall at doctor at RMH during a class for new parents before Lil was born urging new parents not to take their baby out into the world for a long time after they are born - I want to say he said like four months. Myers and I did know when she was first home we needed to protect her. But her doc. visits went so well, her heart was working so well she was nearing two months old (one month developmentally). We kept her home for the most part but did go out here and there. We had people over. I think we were way over-confident in her strength. My poor baby was so new and so much weaker, I now see, than we realized.

We didn't protect her. She got sick. And despite all she had been through this took her down hard and fast and she couldn't knock it. I feel like a criminal. I feel like I let everyone share in her story and so many followed and loved her with me. And then I didn't take the kind of care you'd expect, that everyone assumed I was, and I let her get sick. And she didn't make it.

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I still haven't posted the story of that day. I will someday. But we didn't rush her to the ER. We weren't in a panic. There were just a few things we were concerned about. She wasn't that bad - we didn't have a clue she was deathly ill - not a clue. It all happened after the pediatrician sent us to the hospital and we had been there for some time, that she started to take a turn for the worst and was obviously doing poorly. We still didn't know what path she was on - we left to pack for UVA and her heart stopped while we were at our house.

Lillian and the Tree

Here's a story about Lillian working through her Aunt Marie's death.

Marie Graham Carpenter

holding Gwenyth's older sister, Lillian

May 16th 2008

Gwenyth - you were loved by your Aunt Marie.

She hadn't met you yet. But she loved you.

But you know that now.

Pain beyond pain

Thank you. Each of you who shared Gwenyth with us, who loved her with us. Thank you to those who shared in the memorial service and joined us to celebrate her life.

We have been carried and lifted up and loved by so, so many people - from those we know deeply and daily, to those we've recently become aquatinted with, to our church family, co-workers, to people from the past but close in heart, to people we don't even know. Pain, sorrow and horrible things are strong but love is by far, more present and more powerful. God has been glorified and revealed in this amazing show of love - we have been so blessed to witness that - and Gwen in her tiny little life touched so many - that I know it is my duty to honor that by saying, I do believe there is Hope - even as I myself, am going to be struggling for a long, long time to make peace - I couldn't do this if there wasn't.

I cannot let my Gwen down by giving into despair, to the grief and the unbelievable guilt I carry. I will work towards that Hope, I will keep looking for God, I will do it for Gwen because her little life amazed me in how many people told me they followed her story and were moved by her story. It is HER story, it is not mine. She ministers to me.

I'll be posting words from her service in the weeks to come. I'll be sharing as we hear what the doctors learn - as we are totally in the dark as to what went wrong. I took her to the pediatrician on Friday for a few small things we noticed and were concerned about. We went to our local hospital for a lung x-ray, an EKG and a little fluids. She worsened through the day, but we still never thought she was on the path she was one. She took a dramatic turn and never made it on the helicopter to UVA. We were packing for an expected few days in Charlottesville, about an hours drive (we were not allowed on the helicopter) when we got the call to go back to her, that her heart had stopped and the docs were trying to start her heart again.

I noticed something just now that struck me - which is really what I came here to note - so I thought I'd share it. Her Aunt that died, also shared the same middle name, "Graham." I never noticed that until just now. I've known her since I first dated Myers in 1997. I've been reading the articles in the paper about her accident. And I never noticed until this morning her middle name was the same as my daughter. Had I known, I would have told her in life, how wonderful and appropriate it was - that "Graham" not only honored one family member we loved, Myers' Aunt, but another in our own generation, her, sweet Marie - I would have loved to tell her that it had meaning to me that they shared a name, as I loved and adored Marie's heart and spirit and the way she could made me laugh and laugh about silly things. I simply loved her laugh and can hear it so well in my head. I loved, loved, loved Marie.

I'm noticing her not being around as all the family is gathered for Gwenyth. I notice it so much that she is not here to grieve with us. But, I did have a strong sense that she was holding Gwenyth for me during the service, just as someone would hold the baby while I needed to be doing something - she was holding Gwenyth as I had to be at a funeral. I will be holding that vision in my heart - and take comfort in that. If anyone needed to be held day and night, it was my Gwen - I like to think she has her loving, sweet Aunt taking that on for me - that in some way that would be like her holding her here - they are connected where they now dwell.

The pain of the loss of Gwenyth is going to take a long time until I am more used to it - I know it will never go away - and I can't wish it away because I'd have to let go of every memory I have.
But it is pain beyond pain.

Funeral Plans

Monday at 4:00 there will be a memorial service for Gwenyth at Lindsay Funeral Home. There will be a gathering afterwards, with details to follow. We're not really sure where it will be yet.

My sister Marie's visitation and memorial service are at 11:30 and 1:30 respectively on Wednesday at New City Fellowship in Chattanooga, TN.

Sweet Marie

While we are still reeling from what happened to Gwen, we have learned that Marie, Gwen's aunt, my sister has passed away today, just 2 hours after Gwen.  Please pray for my family.

As I told Parks when Liz had a miscarriage, I must tell you now, my father has a new grandbaby to play with in heaven.

My mom, Sarah, Patrick, Parks, Liz, their little girls, and I are driving to Harrisonburg tonight. The rest of my immediate family will drive up on Sunday.

Please, please, don't call Myers or Laura. If you need to talk to anyone, call me. My number is 256-541-6755.

Pray Hard and Well

Myers and Laura went home to pack and the hospital called to say they were doing everything they could to keep Gwen's heart working. Please pray.

Myers just called me so that I can pass on what is happening right now.

Gwen has been spitting up a little more the past few days, but this morning, her spit up was yellow. This prompted Myers and Laura to called the pediatrician and from the doctor's office, they were sent to RMH, the local hospital. There, they put Gwen on several machines, most of which look pretty normal. However, her blood pressure is 100ish/38 (sorry, Myers was trying to tell me as much as possible in as little time as possible) which means her heart is working too hard and is a sign of possible heart failure. They are waiting on a helicopter to airlift her to the UVA hospital.

I'm assuming that things are super crazy for them right now and that they will call me so I can blog any further news. I will do it as soon as possible.

Some picts...

One hand here...so this is it for today.