Saturday, September 15, 2012

"But there’s something beautiful about this too."

Sharing this article now because it just seems like the right time. A good friend (thank you Alisha) and Myers both found it and shared it with me a while back... and needless to say, I found it wonderful and fascinating. My heart already believed this but now science is supporting this beautiful reality. I love it when science and the heart align.

"Our Selves, Other Cells"

"Is it any solace to sentimental mothers that their babies will always be part of them?

I’m not talking about emotional bonds, which we can only hope will endure. I mean that for any woman that has ever been pregnant, some of her baby’s cells may circulate in her bloodstream for as long as she lives. Those cells often take residence in her lungs, spinal cord, skin, thyroid gland, liver, intestine, cervix, gallbladder, spleen, lymph nodes, and blood vessels. And, yes, the baby’s cells can also live a lifetime in her heart and mind.

Here’s what happens.

During pregnancy, cells sneak across the placenta in both directions. The fetus’s cells enter his mother, and the mother’s cells enter the fetus. A baby’s cells are detectable in his mother’s bloodstream as early as four weeks after conception, and a mother’s cells are detectable in her fetus by week 13. In the first trimester, one out of every fifty thousand cells in her body are from her baby-to-be (this is how some noninvasive prenatal tests check for genetic disorders). In the second and third trimesters, the count is up to one out of every thousand maternal cells. At the end of the pregnancy, up to 6 percent of the DNA in a pregnant woman’s blood plasma comes from the fetus. After birth, the mother’s fetal cell count plummets, but some stick around for the long haul. Those lingerers create their own lineages. Imagine colonies in the motherland.

Moms usually tolerate the invasion. This is why skin, organ, and bone marrow transplants between mother and child have a much higher success rate than between father and child.

....


How many people have left their DNA in us? Any baby we’ve ever conceived, even ones we’ve miscarried unknowingly. Sons leave their Y chromosome genes in their mothers. The fetal cells from each pregnancy, flowing in a mother’s bloodstream, can be passed on to her successive kids. If we have an older sibling, that older sibling’s cells may be in us. The baby in a large family may harbor the genes of many brothers and sisters. My mother’s cells are in my body, and so are my daughter’s cells, and half my daughter’s DNA comes from her dad. Some of those cells may be in my brain...

But there’s something beautiful about this too. Long post postpartum, we mothers continue to carry our children, at least in a sense. Our babies become part of us, just as we are a part of them. The barriers have broken down; the lines are no longer fixed. Moms must be many in one."

-Full article here-

Gwen is always with us in many ways. we know that - and now we know she is with us in a weird-special-way. She is with her baby-brother-on-the-way even as this little guy will never have crossed paths with her in his lifetime, nor her with him. So that's kinda sweet to think on - that she is with him and with us in this mysterious way.

We are setting up her little brothers blog (waiting for blogger to fix a problem) and just trying to wrap our brain around the new big change coming soon! Back to two kids again. Switching, if you will, from being parents of two little girls, to a boy and a girl (here with us, that is). And feeling as if we are holding our breath - because we don't know what tomorrow will bring - we stay safe in each day and are hopeful about what's next, but we know that we are not promised anything, that there is a bigger picture beyond our little world of wishes, dreams and wants and needs. It's not that we don't trust God - it's that we have no choice but to Trust - to trust what is behind us and ahead as all that will be worked for Goodness -that it already has been - and at the same time, to do what we can to that end while existing in our tiny moment here.

I'm trusting that beyond, beyond the weak and fearful, doubting and cynical aspect of my nature now that when I let my heart speak, even as it seems totally naive, that is when I'm letting Trust lead. "Faith like a child" and believe me, when you witness this in a child you really see what that means - I admit jealousy when I see Lil's complete trust in God, that Gwen, and "the list"...are all with Him. She spouts it out as if it is an innate part of who she is to Believe and Trust God. So, I'm an trusting, that in those moments, when I settle down and turn to what is God - which is Love, that's when truth is speaking to me... as I do believe that Love is beyond humanity, not natural, not our inclination but something we have to constantly work towards, anew everyday - elusive because we are not naturally able to host it - except for the grace of God (the gift of the Holy Spirit...).

Some favorite lyrics of mine read:

"The heart can see beyond the sun
Beyond the turning moon
And as we look the heart will teach us
All we need to learn
www.lyricsmode.com/lyrics/j/judy_collins/trust_your_heart.html ]
We have dreams, we hold them to the light like diamonds
Stones of the moon and splinters of the sun
Some we keep to light the dark nights on our journey
And shine beyond the days when we have won

The heart can see beyond our prayers
Beyond our fondest schemes
And tell us which are made for fools
And which are wise men's dreams

Trust your heart"

It is beautiful to think, that beyond our prayers, the heart can see... and I'm am Trusting in something science will never touch. But to live, we need beauty, not just science - and I find beauty - beauty even and especially in science (because it is there too), is what causes me to step back in awe and think, "God."  - I don't confess to know or understand more than that... and I also, really, truly don't have to - there is no time - because love is elusive and I'm human and "our days are as grass." 

Gwen, we think of you everyday. Everyday. As we welcome your new brother soon, you are no less a part of our family. You are ours to miss, here. Your life will always be a blessings - we are better for having known you... we have more love to give because of the way your tiny lifetime deepened our hearts - both by way of joy and sorrow - albeit not ever the way we wanted or dreamed - but I Trust that "my heart can see beyond"...and there is Beauty beyond, there is Beauty here now, even as I'm always aware of the empty place where you once lived - I claim your life as beautiful and I will always hold it dear...don't let the tears fool you. 





Sunday, September 9, 2012

Protecting the unprotectable..."the whole puzzle of being a parent"

May 14th post... I found this in my drafts. I guess I intended to sit on it and edit it or wait and see about posting it...anyway, I'm posting...here it is... my rambles from May 14th this year -- the anniversary of two sudden deaths.
-----------------------------------------------------------

Words.

I'm quieter here, on Gwen's blog...but not for lack of thoughts about all... all that's happened.  Most times I long to get back here... but I'm known for spreading myself too thin. I'm known for burn-out. I'm known for lack of balance and feeling ten-steps behind where I want to be in life. Why should it be different in grief? It's just another aspect of my life now.

And I know what it means to compartmentalize. It's survival, in loss of a loved one. You don't "get over" it. You compartmentalize it. But, it's always there. But your mind constructs a special place for your grief to live. It is accessible whenever you need to feel it. Sometimes the door falls open and you don't have much choice but to let it all fall on top of you. That's all "healing" is in grief. Compartmentalization. It's not something any more or less human than a simple coping mechanism. It's because time keeps on going, you just don't get a choice. Healing is only answered by the Hope of the Eternal. But for now, in human form, the ever-living anguish is set aside so you can breath, since to live, you must breath.

But I can say, I know now, about those paintings...the so called Vanitas paintings; the lemon, half-pealed, the candle wick with smoke curling up, or the vase over-flowing with flowers and a human skull sitting nearby. Transience.

Of course these paintings are not about missing people, but warnings to temper your soul and think on God. However, for me, they speak of lives I watched be here one moment and gone the next. They speak to me of what Joan Didion writes, "You sit down to dinner and life as you know it ends"


She writes:

"confronted with sudden disaster, we all focus on how unremarkable the circumstances were in which the unthinkable occurred, the clear blue sky from which the plane fell, the routine errand that ended on the shoulder with the car in flames, the swings where the children were playing as usual when the rattlesnake struck from the ivy. 'He was on his way home from work - happy, successful, healthy - and then, gone,' "


So much this spring, I recalled sitting in our backyard, beside the hydrangea and peonies, with the one peachy-pink rose watching us from across the lawn, the sun beaming all around on an ordinary spring day in May and telling Lillian, because we had to tell her, that her sister....

Lil was a two, almost two and 1/2. I have no idea what we said. I just know what it felt like. It was the first moment we admitted to ourselves, one of many, that our baby was not with us here anymore.

We were supposed to be spared the news of Marie until I suppose, when the family arrived in town to tell us in person. But we learned of an "accident" via a voice-mail left by her deeply concerned grandmother who wasn't quite sure of the details. "I think she's dead," my husband quoted the message back to me. It was 7:30, our friends kitchen. The most ordinary place we could be. And Marie was dead.

I still feel gutted when I remember all this...

Later, in another book where Joan Didion walks through her grief in the loss of her daughter (to circumstances eerily close to what happened to my brother in August, 2009 - when he fell suddenly and seriously ill to a random virus) she writes, of her daughters death;

"This was never supposed to happen to her"

And it's repeated throughout the book. I know exactly what she means including the repetition of that sentiment. I think everyone who lost someone, especially young, especially suddenly, and add to that, tragically... knows that sentiment.

And as I meandered around tonight online, I found another mom's blog, a mother missing her little girl lost Easter, 2010. I found her because she quoted a song, one I heard and sought the Internets find the lyrics. It led me to her site. There she quoted a movie, Benjamin Button. It says it all:

"You can be mad at...how things went. You can swear and curse the fates. But when it comes to the end, you have to let go."

and...

"Sometimes we're on a collision course and we just don't know it. Whether it's by accident or by design, there's not a thing we can do about it."

Put it together and you have reality. Reality, always staring us in the face, whether we like it or not. "You sit down to dinner and life as you know it ends" and there's nothing you can do about it. There's not a thing you can do about it. It's compartmentalize/let-go or I don't think you survive.

Thankfully, thankfully, I believe you can harbor more ability to appreciate what it means to love, when you find a gaping hole in your life where a loved-one used to reside. In my case, I'm blessed with so much love in my life - I don't take it lightly that I live a "roses and wine life" now, now that the "dust" has settled and I have a healthy baby, so far as I know, on the way.


 I'm well aware of the reality-beast staring me in the face every-single-day; the one that taunts me about the transience of my life and every-single-person I know and love and can't live without. The word "ripped" comes to mind - at any point in time a loved one can be ripped right out, or I of theirs. I'd always rather I didn't know what it means to love, the way I know now and could just live in the bliss of it all and pretend that nasty beast isn't sitting right next to me.

Instead the hardest part, for me is the crystal-clarity of how human we are all, beyond the transience aspect, beyond our frailty and quick goneness - but just the day-to-day, how we fail at love, despite the glaringly obvious transience of our moment here. No matter how much we know of it, that we are supposed to love, we can only fail, we are not God. So it's a weird place of deepened appreciation and commendation. Of conviction.

That's all. Just weird. Complicated and yet so simple. Love, it is the the instruction regardless - and it is humbling - you realize, when you really focus on that instruction, how uncomplicated life is and yet how much we let ourselves junk it all up.


"Time passes.

Could it be that I never believed it?...


This was never supposed to happen to her, I remember thinking -  outraged, as if she and I had been promised a special exemption - in the third of those intensive care units....

When we talk about mortality we are talking about our children.

...what does it mean?

...when we talk about our children what are we saying? Are we saying what it meant to us to have them. What it meant to us not to have them? What it meant to let them go?

 Are we talking about the enigma of pledging ourselves to protect the unprotectable. About the whole puzzle of being a parent?"


       - J.Didion

Loosing a child is humbling. Let's just put it that way. And writing about loss, of a child and a not-yet 20-year-old girl (both of whom deserve so much more than such non-descript references, but for the sake of a blog-post the impersonal will have to do) - writing all this while a little baby-boy kicks inside me -it just leaves me noticing how weird life is and unexplainable - it is not a puzzle where the pieces fit together - and it will lead to insanity if you try. I'm just left, small-feeling. Humble. Tired.

And content enough. Content enough to try to do better tomorrow, on the things that I feel I can do better on, which is mostly about Lil and other people in my life. Content to keep trying to grow my garden - the one which Gwen is my muse. Content enough to always be ten-steps behind... knowing you can only do what you can do in the quick hours of the day...


Content in knowing, I just don't know the answers. Content with this exact moment, here where I am, with my imperfections eating at me, my daily little failures chewing on the fibers of my soul, knowing, it may be as good as it gets this week, this month, this year...and soaking it all in "as is." I'm hoping our worst-days-imaginable are behind us, while reality (that beast sitting near) has a good laugh at that daring act of bliss.






And the rain started again outside. How I love the gentle sound of the rain. It is soothing. Simple things. It's all we ever really have. Moments in time passing. If you can notice the moments, at least once in a while, you are doing okay.


I am doing okay.

(The baby-loss mama whose blog I found tonight).
http://iseewhatyoumeme.blogspot.com/2012/04/dear-charlotte.html


Saturday, March 17, 2012

Happy 2nd Birthday little Gwenyth (and some rainbow talk...)

Many people seem to wonder...so I wanted to share, that Gwen's birthday is an okay day. She is easy to celebrate. Would be of course, far better if she was here... But, the pain of her loss is now so familiar to me that it effects are different. It's no less. I can recall details in a split-second and my stomach sinks... the ache isn't less but with familiarity my heart can handle it better now - if that makes any sense.

Each loss from 2010 is hugely different - incomparable in every way. To be honest the tears come more easily these days when I think on my sister-in-law and brother-in-law. To be scientific and dry about it I can only guess that my heart could only take on one loss at a time and it's gotten to to them now. Eventually the familiarity of that pain will also find its settled place in my heart.

I miss them all - the blank places where they once each colored my life in their own unique ways are always apparent to me as it is to each who person that misses them. Everyone who loved them and counted on them in their lives lost something different, which is something I feel worth pointing out. Grief is so unique to each person for each personal loss. So, I don't claim to speak for anyone but myself when I say it is familiar in my life, whatever that really means.

I wish things were different - it will never make sense to me how this is what happened to each person- but it all is what is is now and missing them all is becoming familiar, that's just the best way I can describe it. Not easier. Just familiar.

Mostly all I feel today, on my little Gwen's birthday is deep gratitude...so it's a good day... and the reason for my general, over-all peace on her birthday is testimony to all supported us-  the love and care sent our way, it is lasting...it is never forgotten, it sustains continually. The memories of her birthday and the amazing way so many people in my life stood by us, prayed for her, and hoped with us - they really do lend warmth and light...and always will. God blessed us ten times over with the people in our lives and Gwen's memory reflects that forever to me.



On her birthday, my mind settles around the many, many babies I saw that day when I went over to her little bed. I think on all the babies I saw over the weeks she spent at CHOP. I think about the "age of miracles" that we do live in - the babies who over-came odds like you wouldn't believe and yet even so, in this "age of miracles" there are still those whose parents had to say goodbye - like us.

It is a miracle the heart ever forms right, it is a miracle a baby's heart can be given a fighting chance, it is a miracle heart-ache like this doesn't just kill you...and my heart goes out to those who don't experience the support I did both before she was born, during her hospital stay, and after we lost her so suddenly.

As on think on this, I want everyone to know about Mended Little Hearts of Winchester and even Sister's By Heart for HLHS - I want to pay it forward, it is the least I can do to share the links to these organizations and promote them. As for supporting those living with this kind of deep sadness, the Sadie Rose foundation is one place here in Harrisonburg working hard to support those grieving the loss of a child. It is an amazing undertaking that Regina Harlow has embarked on...so pray for SRF as you think of us... I think that's one of the most unsettling feelings left on my heart; knowing we are not alone in loosing a child yet knowing just what it feels like - you don't ever want anyone to experience this, ever.

I wrote this last year, Gifts of Gratitude and actually in my mental fog I was still in didn't follow through. I wrote it for me, my own little outline of how to pay-it-forward and honor Gwen's tiny-little life. I share it here just to let everyone know about ways to donate to/support causes that I can attest to, that Gwen's life attests to.

Finally, today I feel compelled share something by way of speaking of rainbows and miracles...

Of Rainbows - there is a quote I love that reads; "That gracious thing made of tears and light." I remember seeing a rainbow in our backyard last year the day after Gwen's birthday and again the day after May 14th. I liked the symbolism. It was just kinda neat - two rainbows the day after Gwen's two anniversary's.

The rainbow in my backyard on May 15th, 2010 with the quote I love.

About miracles, I'm going quote lyrics to a song.. "In the age of miracles. There's one on the way" (Mary C. Carpenter, "Age of Miracles.")

If you haven't figured it out from my cryptic quotes above  - this is my online announcement that we are hoping for/expecting a third child to love. I am just beginning my second trimester. Lillian and Gwen are going to have a baby brother or sister in September, God Willing! We will love and care for this child however we are called to. Of course we are hoping for ultrasounds that show nothing but a healthy baby and blood work after the baby is born that shows nothing wrong.
 
And yet, oddly I get sad for Gwen even as I'm happy to know we are expecting again. It's a funny place to be - emotion-wise. It's hard to explain. So I'm not going to try too hard now. But just, it feels both good and not-god to celebrate Gwen while expecting another baby and hoping for health... But I'll focus on the miracle that is life - which all three of my children claim. And I'll think on rainbows as I wait in Hope for what news that will be given to us on April 16th (our scheduled fetal echo at UVA). And I'll remember that wonderful St. Patrick's day two years ago... when I held my little Gwen for the first time and looked in those eyes.

This description of a "Rainbow Baby" says it perfectly (I cannot find the author of this quote to credit...wish I could). ; so I'll end with this (a Rainbow Baby, by the way, is a baby who is conceived after a miscarriage/still birth/infant death):

"Rainbow Babies" is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope."

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Happy Birthday Gwenyth! We love you!
Gwen with us soon after she was born.

Just before her open-heart surgery on the morning of March 19th, 2010.
Her sweet self, taken at our Philly Apartment soon after she was discharged (great capture Aunt Becca!)

Friday, February 10, 2012

Please join me in Caring for little hearts during American Heart Month

It is CHD Awareness Week and American Heart Month and I would like to invite you to support a little heart in memory of Gwenyth.


 
This week, a gathering of ladies from my little church got together for "CHD Awareness Week." We wanted to celebrate the nephew of our fellow church member, a sweet little guy named Thomas Campbell Fawcett. Diagnosed prenatally with Hypoplastic Left Heart Syndrome, he was born June 10, 2011.

His journey as a CHD warrior has been a rough and bumpy ride, but he's going strong today. He has overcome some huge hurdles and stands out as one tough cookie in the CHD world. We were able to meet Cam, his big sister Maggie and his mommy as they were traveling through on their way back to North Carolina after a day-full of doctor visits at the Children's Hospital of Philadelphia.

The gathering was an opportunity for myself and other CHD Mothers to share their child's story.  We also collected supplies and donations for care packages for Sisters By Heart, in honor of Cam.

 (Thank you everyone, for your care, time, and generosity!)

The reason I'm writing is to share the news that the event continues...and it is open to everyone! Please consider joining us in supporting "heart babies" and their families.

The Event is on Facebook for you to share: "Caring for little hearts during American Heart Month" as well as right here:

~Caring for Little Hearts During American Heart Month~

Meet the CHD kiddos who inspired this event:
http://pinterest.com/lauriecarpenter/chd-close-to-home-families-in-harrisonburg-area/

My personal narrative about these kiddos; CHD Awareness: Intertwined Stories here in Harrisonburg

How to Participate: 
You can donate items needed for care bags. If you live in Harrisonburg, you can give your donation to the person who shared this event with you (they will in turn get it to me for distribution). Items can also be mailed directly to the organizations. Follow the links below to learn what special items you can provide.

You can donate $5, $10 or $25 to one of the following organizations:

Sisters By Heart:
http://www.sisters-by-heart.org/p/care-packages.html
Sisters by Heart supports families newly diagnosed hypoplastic left heart syndrome, "one precious heart at a time." A major aspect of their mission is to send care packages to new mothers (and fathers) who are at the beginning of their journey."We want them to know that they are not alone and provide resources and understanding while their child undergoes care and treatment from birth throughout recovery or their first surgery."

Mended Little Hearts of Winchester:
http://winchester.mendedlittlehearts.net/?page_id=7

Parents with children who have been diagnosed with a congenital cardiovascular defect need to know that they are not alone and there is hope. However, even well-meaning family and friends and compassionate medical staff may not be able to offer them the strength and comfort they need. By speaking with a trained parent volunteer, whose family has serviced this same difficult situation, parents in crisis can work through their overwhelming emotions as they focus on the vital medical decisions at hand. Through the support system and educational resources for the Mended Little Hearts, families will be able to develop and immediate connection and begin to build a sense of hope for the future.


We also organize and provide Care Bags to area hospitals for families during their extended stay.


ABOUT CHDs:
A congenital heart defect (CHD) is a structural problem of the heart
that occurs in the first seven weeks following conception.

CHDs are the most common type of birth defect, affecting 1 in 125 babies born, according to the March of Dimes.

To date, doctors don't know the cause of the majority of congenital heart defects
 
Learn more: Overview with Illustrations

Feature Story of a day in the life of a Pediatric Heart Surgeon: http://www.gwenythcarpenter.com/2011/02/chd-awareness-must-read-miracle-is-his.html

Faces of CHD Pinterest page for CHD Awareness Week is here:
http://pinterest.com/ruth_h/the-faces-of-chd-congenital-heart-awareness-week-f/



Please, take a moment to read about the children our gathering represented. Consider participating and supporting two wonderful organizations, Sisters By Heart and Mended Little Hearts of Winchester. Please spread the word and share this event and help care for little hearts during American Heart Month.
 
Thank you for participating in CHD Awareness Week!

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One last item: I'd like to thank everyone who participated in the "lia sophia" fundraiser for Mended Little Hearts of Winchester! I was so pleased to be able kick of "Heart Month" with such a successful and fun event - we raised $202 while adding some lovely jewelry to our collections. Thank you and I hope you enjoy your pieces and maybe are inspired, when you are complimented, as of course you will be (their jewelry IS really beautiful) to share that you purchased it at a fundraiser for Mended Little Hearts and in memory of Gwen. <3  Thank you Jessie and Erin for organizing and for your generous donations!


CHD Awareness: Intertwined Stories here in Harrisonburg - One Small Picture of the Whole

I remember one day,  a friend Kristin was telling me about her newborn nephews’ heart. He was born with all kinds of things wrong. She explained details about his surgery that went so far over my head. I recall thinking,”that doesn’t sound good, how can they help the poor child, no doctor could possibly do anything lasting.” I assumed it was so rare to be born with a serious heart deformity and that the doctors must have been on completely uncharted grounds. I imagined them hoping and puzzling their way through as they tried to keep him alive. I prayed for him and hoped God would spare him... but honestly, I was fearful that it was so beyond the talents and gifts God lent to us in this day and age...

It was March, 2006 when Jonathan, Kristin's nephew, was born. He was my introduction to the world of CHD.  Hindsight would construct a “pivotal moment" there but, at the time I remained clueless, never hearing or perhaps never registering the term "Congenital Heart Defect."

One uber-healthy child later, in November 2009 I would go to a 20 week ultrasound excited to find out if our next child was a boy or a girl. The words “something wrong with her heart, something is not right with the size and location of some of her vessels...” stand out from that days’ memory. Blindsided and whacked into another realm - there we were in CHD land.

As I stumbled around the Internet, hoping to scrap together some sense of my new reality, I found and connected with Mended Little Hearts of Winchester. They put me in touch with a member, Becca, who lived nearby, who’s son, Gabe, had the same diagnosis as my baby. He was 8 years old and doing well.

To be able to look another mother in the eye who knows the terms you now live and breath - I’m sure you can guess - it lit so many dark corners and grounded my feet a little. Hope started to be real.
Several hours for many days on the Internet taught me that CHD’s are not rare, unheard-of, problems that give doctors cause to shrug and shake their heads. I quickly learned that many, many babies start their life in need of complex surgery. Connecting with people such as Gabe's mom, in the CHD world became my goal. Online I met other expecting moms on a similar path and found that to be an essential form of support.

I contacted Jonathan's parents, the only other people I had ever heard of before that faced anything remotely similar. They helped me navigate. They answered my questions, and offered continual advice and support. All of the sudden their story “made sense” to me. Their story was now my Hope. How funny it is, looking back. From clueless to leaning on.

Gwenyth, my daughter, survived to birth. Her surgery went well. Reverence, a deep reverence is the best way I can describe the feeling when I would see her surgeon around the hospital (my favorite feature story about heart surgeons is here). We brought her home when she was one month old, everything had gone well. At two months old, out of the blue, she got sick and died suddenly. According to the doctors, they can only guess it was a virus. Her death is considered unrelated to her beautifully-repaired heart. She would need more surgeries as she grew - it was not going to be a simple road, but we were well on our way. And then we weren't.

"Medicine, I have had reason since to notice more than once, remains and imperfect art." - J. Didion

Almost one year after we lost Gwen, a friend, Heather approached me after our church service. She told me, that her nephew Thomas Campbell, down in North Carolina just got diagnosed with Hypoplastic Left Heart Syndrome (HLHS) in-utero. My first thought was “oh no! I wish you didn’t know me! I’m not representative of what has to happen.” I felt the word HOPE from my mouth would sound ridiculous. My other, first-thought was, "oh, no! Not another baby, and really, twice in this tiny-little church?" You want to believe if you take a hit, then everyone you know is “safe” - somehow you want to believe the least you can do is protect other people from this kind of nightmare. Superstition; you know it’s baseless yet it gives you something to pretend to steer with.

Thankfully I could offer something other than words touting hope, which again, coming from me felt less believable. I nominated her sister to receive a "Sister’s By Heart care package". This is a care package specifically for babies newly diagnosed with HLHS created by a recently formed organization called “Sisters By Heart.” Each item is placed with a friendly and informative note explaining why its included. A care package like this helps the mother become familiarized and perhaps even a tiny bit more comfortable with the reality of open-heart surgery on a newborn. It is a care package I wish I could have received. I also encouraged her to seek a local Mended Little Hearts (MLH) or some kind of CHD support-group knowing how important MLH of Winchester continues to be for me.

Several months down the line Heather and I learned unbeknownst to each other, of another local CHD Warrior and his family. I read about the family in the newspaper. It was a feature story about the March of Dimes up-coming walk. Heather on the other-hand, met the family through her husband, his building company having built their house. It was a family that recently moved to Harrisonburg from Tennessee. Christie and her husband was blessed with twins in 2007, Lauren and Blake. Blake is an HLHS "CHD Warrior" and has recovered from more than five surgeries. In May, 2010 Christie sadly lost a baby boy, Tristan to HLHS. He was born at 25 weeks. This week, at a special CHD gathering by my fellow church ladies, Christie was able to join us and share a little about her journey in CHD land.

Heather and I talked about how strange it is to go from never hearing about something to hearing about CHD so close to home and all in a short period of time. It is in once sense, helpful - feeling isolated is never a good thing. However, you also don’t want to believe it is so common.

In the last year I also learned about another sweet baby girl, diagnosed in-utero with HLHS. Her mother is commutes and hour here to work as doula here at the Brookhaven Birth center. She was on the Sisters By Heart recipient list, a care bag was being prepped to mail. Her little baby girl, Pheobe Leilani was born at 30 weeks, on April 11th, 2011. Phoebe was loved and snuggled by her parents for two and a half hours before she joined God's kingdom.


Looking back, down this one small path in my CHD journey, I see now, as the memories are recounted and the connections are mapped out - each personal story weaves together into a whole and it creates a fairly complete cross-section of CHD - a “sample” of what complex CHD looks like. I could create several tapestries like this, there are so many stories I know about and so many CHD warriors and family’s I’ve met.  CHDs are everywhere. I could recount stories nationwide. Gwen introduced me to countless little ones, some I follow closer than others because simply - it would be a full-time job to keep up with all of the CHD's kiddos that have touched my heart. This account just happens to be my more local, “home-town” story.

Of course a true cross-section of CHD would include stories about children who were born with a CHD that may not have needed surgery at the get-go. And that takes but a moment to fill in that statistic with personal, close-to-home stories.  Starting again, with my small church family, there a six year old girl, Jade  who was diagnosed with a hole in her heart as an infant. Her's was "wait and see" approach that turned out well in a surprising turn of events. Step out a little further and there is the story of the daughter of someone I know via a close mutual friend. Madison, nine years old, was born with a hole in her atrium. Last summer after the problem did not correct itself at they hoped, she under-went open-heart surgery. A close friend from childhood, her little boy has pulmonary stenosis, something that requires watching and may never post an issue, but is none-the-less, a CHD.

There you go, complete picture. CHD's from severe, to problematic, to minor, are indeed the number 1 birth defect in the country.

I compiled all these stories onto a dedicated Pintrest Board, if you'd like to spend a moment to read about each child in more detail.

So where does leave us, why am I paying homage to hindsight? Awareness. Simply put, it matters. It helps. It's useful - because if it's not you, it's someone close by - it's a little baby full of life, just needing some help with their heart, so they can stay here a little longer. It's their parents' hearts needing support from family, friends and strangers as they learn about strength and go to the end of "all it takes" to care for the little life, the tiny child, loaned to them. And the most important thing to me about awareness is that there are wonderful and simple ways to lend a hand of support to those living in CHD land. I can attest to the impact of at least two organizations. And please know even $5 is something. Please, consider supporting CHD causes during CHD Awareness week/Heart month and throughout the year. Thank you!

Saturday, January 28, 2012

CHD Awareness Week, Pintrest and creating HOPE

CHD Awareness Week is coming up...please, help spread awareness!

Here is a great way you can participate in spreading awareness in memory of Gwen.

1. Go to your Pinterest account (if you have one) and "repin" Gwen's story found on the special Pinterest board "Faces of CHD - Congenital Heart Defect Awareness Week Feb 7-12, 2012." If you are not a Pintrest user, you can still visit this page and learn more about CHDs.

2. Take a moment to view the board and repin the stories that touch your heart and/or if you have a facebook account, link to this board.

Thank you in advance for your support - thank you to CHD moms, Ruth, Stephanie and Becca  for their efforts in creating this board.

(How to participate with your CHD story is here.)

While reading the stories (it really won't take much time) you can also see just why I'm celebrating the news that HB 399 for pulse oximetry screening (pulse ox) passed in Virginia with a unanimous vote this week. A "pulse ox" screen is a simple test all newborns should have (and now will have in Virginia). It can help detect some severe CHDs that go undiagnosed.

Read the Pintrest stories here and on my own personal Pintrest page and you will see why this pulse ox test is so important...believe me, severe CHD's can go undetected in newborns.

Oh, and here's my personal Pinterest board for CHD week, I tried to pin mostly stories about CHD's that would have been caught by pulse ox screening in honor of Virginia's recent vote. (Note: this board is work in progress...if I ever get back to it, I'm not really online much these days nor a big "Pintrester" - most everything on this board is from the the Faces of CHD Pintrest board I linked to above...so if you "pin" anything, I'd pin from that board rather than mine...it's the official awareness board :)  )

Awareness matters. Thank you for helping spread the word about CHD's!