We miss our Gwen so much - everyday. I think more everyday.
We were just getting to know you… to be with you… and we loved you since the moment we were expecting you… from that moment we laid eyes on you (how I remember that moment…). It's so hard to see you always not-here. Hard to love you this much, yet not be able to see you grow up. Hard to only have a handful of memories. Hard to wrestle down the memories of... the day you left.
Sometime this summer something reminded your daddy about how I sang to you...he recalled how I sang to you while I held you.... that day.... after it all happened. I don't remember that, but he does. I just wish you could have heard me singing.
And I just want to fix it all...have you back... and it's hard.
I will just walk forever, I my gardens then...because if we had a flower, for every-time we think of you...
I took this picture of her tree today. It is the "background" of the collage above. Her tree is still green while all around many other trees are at peak. I enjoyed the contrast. The whole arboretum sparkled with Autumn today while the weather struck the perfect chord of warmth and chill. The wind blew enough to carry the leaves up and around the sky. They fluttered in the sunlight and seemed to be alive, enjoying their new-found freedom. The clouds were pure white and large, lumpy and confident even billowing yet never blocking the sun for too long.
I'm so glad we planted her tree there...it is so perfect.
However, I find myself so often facing the ultimate end of what it means to be conflicted. I mean, let's be honest. I kinda hate this tree. For what it stands for, in place of, instead of, the reason Why it grows there in this spot. It sickens me to go see her tree.
I love this little tree we planted. It's Gwen tree. But... it's Gwen tree.
Today is October 15th and that is significant - as Gwen is not alone. I am thinking of so many other parents today...
God bless, to all those whom we walk along side with.
The Open Window
by Henry Wadsworth Longfellow
The old house by the lindens
Stood silent in the shade,
And on the gravelled pathway
The light and shadow played.
I saw the nursery windows
Wide open to the air;
But the faces of the children,
They were no longer there...
They walked not under the lindens,
They played not in the hall;
But shadow, and silence, and sadness
Were hanging over all.
The birds sang in the branches,
With sweet, familiar tone;
But the voices of the children
Will be heard in dreams alone!
And the boy that walked beside me,
He could not understand
Why closer in mine, ah! closer,
I pressed his warm, soft hand!
To share her with you, to honor this little baby's life - I am debuting the "Sisters By Heart video" for the first time on Gwen's blog and posting a link to a story titled "An Arranged Friendship." It is about Mia and her CHD-warrior friend Zoe.
My heart aches for Mia's family as they face a time or remembrance of the events of one year ago, how their little girl was so suddenly taken. Their three year old son couldn't understand why his little baby sister was not with them anymore. Mia's twin brother was left without his twin sis. And another mother and father were facing pain beyond pain.
Mia's mother wrote;
"I can still hear her cry, see her laugh. It is just hard. It seems that every time I see a baby girl around her age it tugs my heart. I know they say it is not supposed to be easy but there is no words to even begin to explain.
For the 87 days she was here she was my everything. My hope, My dreams, my inspiration and strength to go on. I would continue going every night on no sleep if I had to. She taught me so many things about life. Life is so short for fighting and selfishness. It is hard to imagine in that moment that God already had a plan from the time she was conceived. I hate that plan but maybe in time I will See why. I just think about who she could have become and who she really looked like. It is all just gone in the blink of an eye.
I am very proud of the things I have done and the awareness that has been raised for congenital heart defects. She came into this world with me and left with me. As the priest said during her service, 'Ray and Jennifer are not angel makers, they are Saint makers. Mia Grace touched more lives in 87 days than many touch in 87 years. For in my eyes she is a Saint. She brought together a community and taught many about hypoplastic left heart syndrome and the importance of congenital heart defects. In my eyes she is a saint.' "
I remember being so excited - I remember seeing the twins on facebook after they were born at CHOP and wondering how this mother was going to take care of a heart-healthy newborn and a HLHS newborn who had to stay in the hospital while also caring for a toddler. It made our then-recent time at CHOP seem like a walk in the park.
That little Mia and her twin brother Madden, I remember being so happy for Jennifer and her husband Ray. I am saddened for them now as it will be one year for them on the 25th of this month.
So, in honor of Mia - here now, the Sisters By Heart video:
An Arranged Friendship by Stacey Lihn
"Can you imagine your best friend dying? It's heart-breaking to even think about. Someday, I'll have to break the news to Zoe that her friend, Mia, died, just shy of her 3 month birthday."
Gwen would have been one year old, back in March. You would have been 21 today. You both shared your "0" year - it would have been fun to always know you were the same "ten". So many things would have been fun if you were still here. I'd see you today, on your birthday, when we get into Chatt - it would have been fun!
Lil made up a memory, or maybe it is real - I just don't know - but she said one day, "rmember how Aunt Marie used to say, (and she spoke in sweet, happy voice that I could really hear you saying) "Whooooo ate the cupacke?" So, my plan is to always have cupcakes on your birthday :)
Here's us remembering you and Gwen on May 14th, 2011.
On my side and my husbands side of the family we have several cousins on our hearts who are fighting cancer (one, on my side recently lost his battle). They are all around my parents age. I know too many friends who's parents battle/have battled cancer. I know of children too... Cancer is so devastating and everywhere it seems-
I have two friends who are cancer survivors - both mothers (one who wasn't given hope that she'd live to have a child the other unsure if she'd be able to stay with hers). Both faced unbelievable odds. To-date they are both cancer-free.
This sweet, sad, story written by my cancer-warrior, cancer-survivor, friend - a mother of three, -well, it just is sad and sweet and real...and I wanted to share it...
Keep funding cancer research, keep praying for the cure and be aware of the blessing of good health when you are so blessed... don't miss that... and even better, while you are healthy - take up a cause to support - causes like this shouldn't just be left to those who are personally affected. Take up more than one!
"Life is a tragedy, confront it...Life is too precious, do not destroy it. Life is life, fight for it. -Mother Teresa (thanks to CHD warrior Zoe's mama - I found this quote on her bog and it's kinda my mantra now).
And while I'm here - I want to share one way you can help that I know of personally- below is a link to Jason Williams' story - he is a friend of Becca and Patrick and baby Connor (my sister and brother-in-law and new nephew). He is battling Pancreatic Cancer:
"The doctors at Johns Hopkins have decided that the vaccine trial might not be the safest or best way to treat my cancer. They believe that my many episodes of pancreatitis, irritated an already present cyst and lead to my cancer. I will be making trips up to Baltimore/Johns Hopkins for Pancreatitis clinics and to see specialists who can hopefully cure or manage my pancreatitis. If this is possible, they believe that my cancer will more than likely not return....
I am accepting donations to help pay for my Pancreatic Cancer treatments. You can donate safely and securely, using your debit/credit card via PayPal.
Thank you all for your continued support through this journey - it means a lot!"
My sister-in-law, Becca shared Jason's story with me a while back. She is the one who was there to help us when Gwen was born - who posted for us on this blog many times...goodness, she is the one who announced for us here, the loss of precious Gwen, she is whom we have to thank for the enormous amount of great photos we have of sweet Gwen (and of Lillian too) and in this small way, I want to pay-it-forward and use this blog to help support her friend - I can vouch for the legitimacy of this story and website, so I wanted to do so - so there you go - if you are so inclined to donate, there is one little thing you can do to support someone struck by cancer.
Call me crazy, but a "no brainier," completely painless, dirt cheap, and super-fast test that could reveal serous heart problems is the LEAST we can do for tiny persons just beginning their life... however few and far between babies with CHD may be (ahem, the # 1 birth defect). If one life is saved, that is enough for me.
In Missouri it's called Chloe's Law - here, for me, writing from Virgina - I'm going to call it "Gabe's Law" for now. What do these two children have in common? They were both born with undiagnosed CHD's that could have taken their life rapidly. They both had doctors, who at first, actually downplayed the symptoms the parents raised (keep this in mind by the way, this idea of doctors missing symptoms of serious heart defects, just remember that...you'll enjoy the irony later).
I don't know Chloe, but I found her story online and was impressed by her mother's work on the "pulse ox issue." I do know Gabe. He lives nearby. Gabe was born with Truncus Aterious, like Gwen. At some point - I'd like to share more about Gabe and his family - but I have to stay on point -however his mother has been an integral part of support on my journey. For now, let it be known that Gabe is a thriving, smiling, 9 year old red-headed little boy. But he is one of many examples that, yes, CHDs can be easily missed.
I have to say, I appreciate this news article (which I will link to momentarily). Finally a journalist did some real leg work regarding pulse ox and dragged some meaty information out into the light. I've had questions - I couldn't understand why this was a decision a governor might have to ponder. Babies life? What's to think on? Move the pen. Right? I read this article and I now feel more fully "versed" on the issue, more "balanced" if you will. And my "stand" on the issue remains the same. Move the pen.
This article offers some insight into well, the "issues" raised against mandating this test as recommended by the department of health and human services. And while I'm glad to have some points to address as I try to help spread awareness for this issue - I have to say, I had to pick myself up off the floor first, after reading this article.
Before I go any further - I want to address the "issue" of bias - that I sound like a crazy "baby-loss" mama who is a giant alarmist who needs attention or perhaps is hyper-vigilant and over-sensitive and ya know, have lost my perspective. You know, the argument being that I am too close and all I see is CHD everywhere and I'm trying to make every one afraid.
Let me offer this, and take it or leave it, but I'll toss this other thought out there. I desperately want every baby that is born to have the best chance possible - and this (helping promote mandatory pulse ox tests into law) is ONE SMALL, tiny, minuscule thing I can do based on the "experience" and "knowledge" I bring as part of the CHD word and part of the "baby-loss" world.
I think of all my friends and family their children and beg God to keep this type of pain local - here - and never touch anyone I know with this kind of loss... I simply want to do what I can with what I know. And believe me, I know about CHD. Should I just sit on it?
In particular let's talk about this "kind of loss" (a baby dying from an undiagnosed CHD) and what I know about it from the "underground" world where "baby-loss moms" and "heart moms" meet up and share their stories and support each other: A baby, undiagnosed with CHD can die in a mothers arms while nursing. It doesn't happen often. Yes, it is rare. It is also preventable. Preventable trumps rare any day.
I'm an advocate for all moms, moms who don't know about this- until -well, you get the diagnosis for your baby....). Believe me, YOU DON'T want your baby to die if you can help it, you don't want your friends baby to die, you don't want your neighbors baby to die - and yes, it "may not happen much" but if we can save even 1 life this year...isn't it worth the few minutes it takes to strap a tiny strip to a baby's toe and get an oxygen reading 24 hours after the baby is born?
I honestly can't believe there is any "argument' here...but read this article and see - there are people who are shooting down this proposal:
Test to detect heart disease in newborns may be mandatory in all hospitals.
And seriously - one argument proposed is that this test might give parents a false sense of security. Apparently there is concern that if parents are told their baby passed the pulse ox test they, "wouldn't seek medical care for symptoms that may develop later" - Um, excuse me - there is a remedy to that - it's called the written and spoken language. And pardon me as I get up off the floor...
Hopefully, doctors, you are giving plenty of information to new parents regarding ALL the tests and procedures preformed. Perhaps you even hand out information regarding other helpful areas relating to newborns (nursing, bathing, car seats, shaken baby syndrome, symptoms of potential medical issues, just to name a few). Please, tell me you are handing out information about symptoms of the number 1 birth defect. And you can say it and write it, that CHD's can be missed by pulse oximetry screening, and stress that parents need to know the symptoms.
Really. There is a "remedy"...to that "fear"...
Also -let us take a moment to address CHD symptoms here on this blog and help keep "awarenss" up and I'll even set a ground-breaking example. I'll include a "disclaimer."
Although helpful in screening for heart problems present at birth, a "pulse ox test" only screens for certain defects. Not all CHD's can be found by a pulse ox test, even severe ones can be missed. Here is more information regarding CHD's to keep in mind as you care for your newborn:
"Some congenital heart defects have few or no signs or symptoms. A doctor may not even detect signs of a heart defect during a physical exam.
Many heart defects do have signs and symptoms. They depend on the number, type, and severity of the defects. Severe defects can cause signs and symptoms, usually in newborns. These signs and symptoms may include:
Cyanosis (a bluish tint to the skin, lips, and fingernails)
All said, I can't believe for a moment this won't pass in NJ and every other state. So I'm gonna go chill-out now.
But take a moment and read this article please, so I can know I'm helping to spread awareness. Spreading awareness really takes two here - I can't spread squat if you don't actually take in some of what I'm ranting about.
"Ever has it been that love knows not its own depth until the hour of separation." -Kahlil Gibran
Friday, May 14th. 3:30 & 5:30. Gwen. Marie. The hours of separation. It was this Friday in May -it was a Friday - and it hurts as though it was yesterday.
I find, myself, that Love for children is outside of time...and this type of wound - well it kinda stays... You get stronger in carrying it but only as any muscle forced to work will grow in accordance - the "Grief" muscle grows, the weight never changes. My baby-loss companion, Michelle writes, "The weight of the grief? Is always the same. Maybe some days, it's easier to pick up - but the size never changes. It's always heavy."
“Strength is born in the deep silence of long-suffering hearts; not amid joy.” - Arthur Helps
And Friday morning, the same day in May - is here...and I see it all...I know, this time I know now how today will pan out...
" Little I knew that morning, God was going to call your name, > in life we loved you dearly, in death we do the same. " (repeat twice when you read this.)
And I can conjure up in a split second ache, tears, and longing and devastation that is no different from the moment "it happened" - I saw my child die - I held her helplessly in a hospital room next to my husband a child whom hours earlier we cooed and awed at. You don't just "move on" - not from a day like that. You change entirely. And in conjunction, you slowly grow your "sadness muscle" so you can carry it all with you - because you don't get a choice. Strength does not come from joy.
I remember that little smile that morning. I lament we didn't get more - that was the first. I remain grateful for that smile...but to love is to want... I wish I had more smiles to "lean on" as I do Marie's laughter.
Twice in one day the phone would bring us news of horrible things, a heart stopping in our baby girl and our sweet sister's life being lost in a fall from a high place in the woods. This spring, this May, I watched it again - even as I know it is over - but this is the first time I marked the days and "watched" it play out.
On the other side, after this anniversary of death - perhaps I'll have changed, perhaps some bit of release and relief will come between the first and this second time it all happened. But in truth, I'll be walking on the very same path and with many cruel moments still to come, as Gwen and Marie are not here and this time I don't have shock to "protect me."
I am at once always devastated, always so sad - and I've lost before - but there is something about those younger than you - the "love roots" are entwined differently, they rooted into the bottom of my heart - whereas those older than me, I was rooted in theirs. They left "late enough" that I had completely established my own depth of roots, separate, mostly from them. Their loss tore merely from the top of my heart - I still think on them, still wish them to be here, I still love them and treasure their memory... but those rooted deep at the bottom of our hearts, those we watch grow up - they are ripped from the deepest place in hearts and pulled through, entwined with your roots all the while being torn mercilessly.
And three times in one year. We are worn out. I just feel worn out. And I just want them back. I'm not strong...
I loved those we lost. "To love is to want" - I'll accept there will be no peace to be found regarding their sudden absence and the trauma of how each left...and I'll keep loving them and wanting them back in our lives. And as your gain no strength from joy, I'll keep getting "stronger" in a way no one ever wants to. I wouldn't trade this for a thing, I know, I know - this is the cost of having had them in our lives - and they are worth it - I wouldn't have wanted to not know them... but even so, their losses are what they are - tragedies - and always will be.
It is over, and yet, it is never over - it is always open-ended, always heavy.
"There is no more ridiculous custom than the one that makes you express sympathy once and for all on a given day to a person whose sorrow will endure as long as his life. Such grief, felt in such a way, is always "present," it is never too late to talk about it, never repetitious to mention it again."
--- 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, 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
The last photo taken of the Carpenter kids. It was at their Grandmothers funeral. I was 21 weeks with Gwen.
Marie and Gwen are right next to each other. Missing is Aunt Liz and little cousins
Lily Kate and Charlotte...so sadly, it's not everyone. But it's lovely we have this.
The last photos I took. Last ones of Gwen.
Last one of daddy and Gwen, mommy and Gwen and big-sis and Gwen.
Taken in the end of April and May.
The Broken Chain
Little I knew that morning, God was going to call your name,
in life we loved you dearly, in death we do the same.
It broke our hearts to lose you, you did not go alone,
for part of me went with you, the day God called you home.
You left us beautiful memories, your love is still our guide,
and though we cannot see you, you are always by our side
Our family chain is broken, and nothing seems the same,
but as God calls us one by one, the chain will link again.
Life is an opportunity, benefit from it.
Life is beauty, admire it.
Life is a dream, realize it.
Life is a challenge, meet it. Life is a duty, complete it. Life is a game, play it. Life is a promise, fulfill it. Life is sorrow, overcome it. Life is a song, sing it. Life is a struggle, accept it. Life is a tragedy, confront it. Life is an adventure, dare it. Life is luck, make it. Life is too precious, do not destroy it. Life is life, fight for it.
"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day." 2 Corinthians 4
A video that someone made - that speaks perfectly how this year has been, how I am now...and my thankfulness always to the care extended towards us - as the narrator says:
"I'm so thankful to those who without you my tragedy would have been unbearable. To those who were around me to hold my hand and catch my tears...thank you"
Watch it here: When A Baby Dies
And so many thoughts.
Notes on Grief- as I try to step out and observe it - it has gotta be the strangest human "thing." Are we that egotistical or is it that we do love that deeply and our love reflects its s Divine Source... when I think on that I do feel better. It's only Love and it can nearly kill you.
Sometimes I judge myself, but then I recall that a West Point grad/a five-star general/American President found himself undone by child-loss: "That was and still is the great disaster of my life - that lovely, lovely little boy... There's no tragedy in life like the death of a child. Things never get back to the way they were," explained Dwight D. Eisenhower.
Recently I met a little girl and yet, never met her in person as I had hoped - I instead went to her funeral service. It was a Catholic service. The last Catholic service I attended was my dear Grandfathers, years ago, and I never forgot how surrounded by God's Grace I felt - I remember being glad to know that was where my Grandfather went every week - that that was who his Priest was - he had a good church.
This tiny little baby's service moved me as much. The Priest spoke with complete confidence - saying something along the lines of, either we are all duped by some big hoax, either it is true or not (God) and she is either with God and now a Saint watching over or not, and then if not, at least she is not subject to being fooled like all the rest of us still here.
At another point in the service he exclaimed calmly what he believed with assurance,
"she is with God now - who loves her more than her parents were willing to love."
I could feel that one. Wow. Now, there is a way to speak of heaven on no small wishy, washy terms - and it got me thinking, the whole message of the Bible, is how all of this is not even about us - but about God not wanting to loose us and about God existing for his own Glory - for His sake. He didn't want to loose Gwen far more than me - according to scripture. So the promise I am given in this painful place of longing - is that has been taken care of... and not even for my sake.
In the meantime - to be honest, I'm borrowing all the Faith I can - as it's all too good to be true, I need it so badly that I don't believe a word of what I say to myself. It's all too convenient - to talk about a happy ending. I believe it more if you think of it on a level far beyond us, as I mentioned above - but for now - I just know that despite all the pain, there still is much beauty and I know the "darkness" is the smallest measure of man - and yet it is what human nature excels out, finding ways to feel and stay down. So I can "get through" this even while I'm in it and be okay... and if you have Faith then I'll borrow yours, I'll believe you for now and in the mean time, the only thing I know for sure is you gotta try to "make hay while sun shines."
And back to humanity and my narrow little world -back to observing my "grief"- what has surprised me there is so little control in it and much of its power dwells in your sub-conscience (I'm sad now simply in response to the weather - my senses recall a baby in the spring - and all "shock" has worn off - I feel her not here more than ever before). I can't talk myself out of it - and I also don't believe I should - I need to somehow, live it again but for the first time with foreknowledge - it's part of facing reality.
And it is like I'm loosing her again. And today, this Thursday is the hardest I believe. This week...all the "last days" of her life, and today, the last full day we had together - last days of peace and no trauma... and knowing it this time around, that a year ago this Thursday would be my last day and night with tiny, little, Gwenyth Graham. That, also, we would get a call about Marie the next day... a confusing message from Myers' grandmother that ended with, "I think she's dead..."
I recall Lil in her bed -the "Thursday before" - waking up from her nap. I told her we were all going out to a plant nursery. Somehow the subject came up of leaving Gwen behind - I explained to Lil that Gwen would be sad if we did that and that no I wasn't going to leave Gwen, she was coming with us.
We were living normal life - Lillian was learning about having a sibling and I was busy with two kids and a house- and hoping to get some plants in the empty places in our garden beds, I picked Myers up from work and off we all went...and Gwen was dying all the while - she was sick and I didn't clue in.
A tree now stands in Gwen's memory here at our arboretum. The plaque is there with her name on it (I've not seen it yet). It's a tree I stood at, at the nursery, looking at and admiring while holding Gwen in my baby carrier, while Lil played in the puddles around the nursery. It is a Butterfly Japanese Maple and I stood beside it holding Gwen the day before she died.
Yes, she died on the 14th, but she died on a Friday and today is the hardest day, I think. I remember the Thursday before...
But I've been remembering Easter years ago - when we hosted everyone, all the Carpenter kids... way back in 2002 and 2003 when we lived in C-Ville. Easter and April hold so many memories for me now - for us. And it's still just all wrong. I loved our growing family - growing up, growing in numbers through marriage and children. I married into a family that I grew to adore and just believed would always be there...when they are younger than you, you just expect that. Kinda like your own children - you are supposed to go first.
There are good days ahead, I know this, and I look forward to them - but I won't stop missing those we lost... I can't help that. I'm sorry. But I can't help it. We lost so much last year...and really in some ways I believe it is only beginning to sink into my reality.
While rummaging back in Picasa, I found that I had visited my brother and his wife in Philly in 2007 - in March. I had been to Philly before (Army/Navy game). But to realize that in '07 I visited my brother there while he was in Wharton grad school - in March of all times - I just didn't realize that visit took place in March, until just now. That phrase, "little did I know" pops into my head...little did I know then, that Philly would be our home only three years to the month, three years later down the line. I know I also breezed through Philly later in '07 for a short hour or so visit while traveling back to VA from NY while pregnant with Lillian - again, "little did I know"...little did I know I'd be delivering my second child there in that very city. Life is just weird. That's all I can say.
May is starting. I want to stay in safe April, where at least I know she had this month in full.
14 days and she is gone again. That's what it feels like anyway. I loose her again in 14 days. And I can't stress enough - I have no idea where a year of my life has gone - I am not a year away from May 2010. Not even close. This kind of thing, if I step outside of it for a moment and observe it - "grief" we'll go ahead and call it - is a weird phenomenon. It changes your relationship to everything, most especially Time. At least for me.
14 days and it's a year since sweet, wonderful Marie. I still feel as though perhaps that just is incorrect information and I can wake up from that part of this nightmare....
Maybe this time around I'll do better - since I know it's going to happen - since I know all about May 14th and since truly it happened already. And busyness and Life and a three year old (all wonderful that she is) - and everything that demands even some of the little brain power I can muster up will keep me swiftly moving along without really much time to do more than note, from time to time, when I get the time, just how this all really is inside me, what I really feel - so, I'm fine, no worries. I'm okay, the bottom line is I don't have the time to not be. I do have things I hope to get time to post here and if I can do that - it will be good. I'll be glad for that. In the meantime - life goes on, and that is always the problem... life goes on and moves us all with it, breath caught or not...
Easter last year. It was earlier in April than this year. Gwen's Uncle Bob and Aunt Nelly came to visit. They were only a handful of loved ones who would get to meet her in person. Aunt Becca was there. Uncle Patrick, Becca's husband, had flown in previously for a weekend visit. Gwen met both grandmothers and her living grandfather, all while in Philly.
I remember Easter most especially not because it was the day before she was to be discharged, but because Aunt Becca and I shared a quiet moment, just the two of us, on Easter morning with Gwen. We sang to her my favorite hymn. It has celtic roots so it was fitting to sing it to my "St. Patrick's day baby."
What I forgot, until Gwen's funeral, was the exact history of the song. It is connected both to Easter and to St. Patrick himself. The history I will cut and paste below, after the photos. When you read it you will note as I did - how fitting a song it was for Easter and for Gwen.
My favorite hymn now is sad to me, yet also more beautiful. And Easter now always bitter-sweet.
These days, time is winning. I think every second of all of "this" and I can't spend a moment digesting it all…all the pain and anguish that still lives fully inside me. But I Hope - I Hope that God didn't want to loose Gwen far more than we didn't want to and I know Easter speaks to that.
I'm not at peace about Gwenyth and that day, and all that's happened since we lost her - I am not that strong. Instead I'm able to haggle out some type of peace-like truce, moment by moment, with all as is. And not with how, or why, all that has happened has happened, but with just here and now regardless, because it doesn't matter and it will never square or settle.
Regardless of personal circumstance, there's just so much to try do in a world so rampant with imperfection and forces beyond human control. Someday, as I get better at haggling and am not so exhausted afterward, I hope to channel what I can of "all this" towards trying to do something useful.
So, these days I square only with the sadness and a longing and try to give the "unforgiving moment" my time and energy.
For Easter, all I've got to say is hopefully, "it is finished" and someday separation will be no more.
Till then, God make me worthy of my friends, my family, my daughters.
Earlier in April, little Gwenyth all swaddled.
Uncle Patrick visits.
Aunt Becca enjoys holding sweet Gwen.
A sweet moment with her daddy and mommy.
Easter and a special hand-me-down dress from Lillian. Uncle Bobby and Aunt Nelly gave Lillian this dress which she wore to their wedding. Since they were visiting for Easter it was the perfect outfit to choose. It even matched the adorable "cat booties" Gwen's Grammy had bought for her.
Uncle Bobby and Aunt Nelly give Gwenyth a lamb blanket for Easter:
Discharged from CHOP - the day after Easter:
Grammy with her two granddaughters.
At the apartment in Philly, the day after Easter, my two girls.
Gwenyth at home in Virginia
Be Thou My Vision, the Song and the Story
St. Patrick (385-461 AD) was a man zealous for the things of God. As a missionary, he defied an Irish King's edict that restricted the lighting of candles on Easter Eve. King Logaire of Tara had decreed that no one was allowed light any fires until a pagan spring festival was launched by the lighting of a fire on Slane Hill. Patrick chose to honor God in spite the threat of death. King Logaire was so impressed with Patrick's brave devotion, he let him continue his missionary work unhindered.
An 8th Century Monk, Dallan Forgaill penned the words to Be Thou My Vision, as a tribute to St. Patrick's wholehearted loyalty to God. The hymn was translated from Irish to English in 1905 by Mary E. Byrne. In 1912, Eleanor H. Hull arranged the song into the verse most commonly found in English hymnals today. The music to accompany the lyrics is an ancient Irish folk tune called Slane.
In the blog posts here: Gwen's Birthday post and here: My post leading up to her birthday the videos are at last, up and running for good. I finally got technology to do what it was supposed to do (and I really am quite sure I would have found a high bridge to drop this computer off of had I not been married to such a smart "computer guy" ;).
Well, enjoy Gwen's sweetness, and Lil too. And thank you. It means so much to share her with you.
I can't get the time that I want to be post here what I want to...but please for now, spend a moment seeing what my lovely "Heart-Sister's" are blogging about.
There is a video of Travis here, whom so recently lost his battle with CHD and left his family full of so many adorable and sweet memories but also, so much heart-break. There is a feature on "Bummer Bears" as well as Gwen's dear "angel" friend Mia's, "Heart Charms" (I love my Mia Marrone Heart Charm - Lillian thought it was the most beautiful thing she had ever seen).
Also, here you can read about a documentary on CHD that is finally released for purchase (I can't wait to buy it and see it). And while we're speaking of videos, I also hope to one day watch, Something the Lord Made. But I suppose it will be a while till I can actually watch either of those, since well, my own little "movies" still play in my head any pretty much any second I don't have something occupying my mind.
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 her....to 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 blog....so 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"
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"
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 up...so 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?
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.
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...
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 that...as 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 left...as 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, dosomething 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. http://www.gwenythcarpenter.com/p/gifts-of-gratitude.html
Gwenyth. We love you. Happy 1st Birthday. Wish you were here.