Wednesday, December 4, 2013

A Link Worth Sharing relating to CHD Awareness

 I tried to post a link to this article on FB but I received this message "The privacy settings for this attachment prevent you from posting it to this Timeline."

So...I figured out another way to share it, since it just annoyed me that it wouldn't let me place it on my FB wall...Here it is:

Environmental Toxins Linked to Heart Defects (One Study in Canada)
  "Congenital heart defect rates have gradually decreased in Canada since 2006, which is about the time the government tightened regulations to reduce industrial air emissions, Ngwezi said. The heart defect decreases were mainly associated with heart defects resulting in holes between the upper and lower heart chambers (septal defects) and malformations of the cardiac outflow tracts (conotruncal defects), according to Ngwezi.

" 'Although still in the early stage, this research suggests some chemical emissions - particularly, industrial air emissions - may be linked to heart abnormalities that develop while the heart is forming in the womb,' said lead researcher Deliwe P. Ngwezi, M.D., a Ph.D., student and research fellow in pediatric cardiology at the University of Alberta in Canada.

     The study is based on congenital heart defects diagnosed in 2004-11 and chemical emissions recorded by a Canadian agency tracking pollutants."

   For now, consumers and healthcare providers should be educated about the potential toll of pollutants on the developing heart,” she said. “As we have observed in the preliminary results, when the emissions decrease, the rates of congenital heart defects also decrease.” 
-- End of my pull-quotes --

I was just telling my mom today how this is something that got on my radar years ago while researching CHD's and here it is in the news today... (Gwen's defect, Truncus Arterious, was a conotruncal defect...and I have no clue if there was any environmental cause such as pollution...I quote this article because it is interesting, not because I think I suddenly have answers.)

It's not good news, but it is GOOD that it continues to be studied. As if it's not obvious - pollution is bad for our health, so I'm all for "greening-up" - it's beneath our intelligence as a species to not at the very least, TRY to lessen the toxic output of our way of living.


Tuesday, May 14, 2013

A Story to Share as we Remember Gwen & Marie


Lillian, Marie and Me with Gwen around 27 weeks.
I have two blog posts "in the wings" for Gwen's blog...and I do intend to share about Arthur and Lil on their blogs...but as the days seem to be consistently only 24 hours and it seems odd to neglect my children to blog about them, I'm just not finding the time and space. I will get to them at some point...but for today, an awful anniversary of huge losses in our life, I wanted to share something as I share Gwen's and Marie's memory. It's a completely heartbreaking and heart-lifting story at the very same time and I hope as you remember Gwen and Marie with us today that perhaps you will feel moved to action for one little CHD Warrior named Wilson from across the world. Read on...his story is below.

An over-the shoulder shot taken by Grammy (my mom)
Snuggled near me in the baby sling.
For me, my little Gwen's life means something if while through the sadness of today she can help bring attention to a place to direct love. Same goes for Marie. I remember how Marie once spoke to me about wanting to do something like her parents, be on the mission field. She wanted to be somewhere helping people in countries that experience the world in ways so different from our comfortable, squishy lives. Even Winship, whom we miss every day too, had a heart that was called towards helping others - he spoke to us about wanting to go into counseling and specifically help boys.

Myers napping with his little Gwen
Myers and Marie at Shenandoah National Park
Same day as the picuture above - enjoying Shenandoah National Park - Will, Henry, Lillian, Laura, Marie, and Lane. Our little Lil was 7 months which is how old Arthur is now. How I wish this group could do the same hike again with Arthur as the baby.
So, to the story I want to share; in short, there is a family (wonderful family) at my church who is hoping to adopt a child from Eastern Europe. These excerpts are from their blog:

"He’s an adorable six year old little boy.  Wilson is in an orphanage in Eastern Europe and has been his whole life (as far as we are aware.) Wilson was born with Down syndrome and a heart condition. He has had surgeries to repair his heart and he now uses a pacemaker. He’s said to be active and friendly.

Wilson is  just an innocent little guy who was made in the image of God and yet because of an extra chromosome was abandoned into a life no child deserves.  We hope to soon deny him of his orphan status and make him our son!  :)"

http://helpbringwilsonhome.com/all-about-wilson/
....

"If you’re unfamiliar with what life typically looks like for these precious children…children with disabilities, living in EE, I’ll try my best to paint the picture…having learned what I know from others.

When a baby is born with a disability such as Down Syndrome, the parents are typically told in the hospital that it is best for a child like that to be raised in an institution….that families are not capable of caring for these children. It’s just been an accepted fact in their society. So, babies are left in the hospital and sent to an orphanage or “Baby House” as they are called. Many Baby Houses have caring staff, some do not. But they are terribly understaffed and underpaid and even the best carers have little time to spend giving babies all that they need.

Around age 4-7yo, the children are transferred out of the Baby Houses and into institutions….mental asylums. This is a very traumatic change for them. They are moved from the only “home” they have known, from the only carers they have known, from a place that usually has a few toys and colorful pictures on the walls….into a mental institution. These institutions house children from age 4 on up to age 18, many with severe mental disorders. They are housed all together….with little to nothing to do. Kids often sit in empty rooms inside or in shacks outside (if they are lucky to get out). Most of them are not taught any skills, they are not given any toys to play with….they just sit or find other unproductive ways to pass the hours away…..rocking, making humming noises, head banging, hurting other children, etc. Not a life pretty to live."

http://helpbringwilsonhome.com/the-stirring-in-my-heart/#more-85

---

"$10 from 2500 people adds up and will keep Wilson from aging out of his orphanage and being sent to a mental institution!"

http://helpbringwilsonhome.com/yes-i-want-to-help/

---

Finally let me just say this also, for today - *Thank you* for surrounding us with love today:

"Sometimes, with the best of intentions, friends (and family), don't know how to help. They may feel that to bring up the subject of our loss is to risk making us feel worse, so they avoid it and talk of other things while the presence of the unspoken builds up to an almost intolerable pressure."  -Thank you to everyone in our life - we've been blessed to not have to feel this way, today and every day, and I thought I'd share the quote because it's a good one for all of us to keep in mind...

We can sometimes be flimsy when it comes to deep sadness and horribly sad things, yet so much of the world is of this "type" - so one way we can be less flimsy is to just "be" with those who are deeply pained and get comfortable with the depth of their pit - be there and know that you are being a comfort by just witnessing their walk through the labyrinth of heartache.

And...if you can and want - I encourage you today to join me in taking our personal awfulness of  today and acting against it; spend a moment to help Wilson's family bring him home!

Sleepy in her carseat
Stretching in her sleep

The Carpenter Girls

Fun. Marie and the word "fun" go together. Her laugh -  I can still hear it.







Saturday, March 23, 2013

A CHD Story to Share in honor of Gwen's 3rd Birthday

As Gwen's life is all about Congenital Heart-Defect Awareness, I thought I’d post along that theme for her Birthday (March 17th - I'm a little late posting). 



Gwen introduced me, along with my family and friends to this vastly populated land of “heart babies”...and here on this blog, Gwen can continue to “speak” for her CHD friends. And so, here now, a "guest post" I've selected, shared with permission by heart-mom, Evelyn.

 

“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

 

Shopping With Cam

By: Evelyn Fawcett
Written Apr 24, 2012 
http://www.caringbridge.org/visit/camfawcett 

Cam and his mom

Cam's Xray results came back clear yesterday.  So we can scratch infections from the list!


The remainder of this entry is for those who read this blog that may be expecting a special needs child.  It contains no medical information and is not a plea for help or pity.  It is a short story to explain what it will be like.  But, in another sense all can see through this story that God's love that comes from unexpected places in their own lives.


Last week, I had to go shopping.  I had three items on my agenda: pick up medications, buy new bottles at Target recommended by our therapist, and find a bridal shower gift for a friend.  The tasks seemed insurmountable, but I geared us up to go.


Anyone with children can tell you it's not an easy thing to get kids out the door, especially when they need to have clothes and shoes on with their hair brushed.  Add on to that pulse-ox machine, check and hook up a full O2 tank, emergency meds added to diaper bag, feeding supplies in, etc. and it makes leaving the house an insane proposition.
 

But more than that, there are the emotional preparations that must take place.  Cam needs to be "in a good spot."  Maggie needs to be snuggled in preparation for everyone paying attention to Cam.  And I need to prepare myself for reactions.  The hardest reaction to "get over" ahead of time is from the mom's whose ultimate goal for their children is protection.  These people shield their children from us, so their little ones won't see the sick baby that would confuse them, hurt them, and make them question their Mommy, "Why does that baby look like that?"  Thankfully, such experiences are rarities.


There are also those who look sympathetically and sorrowfully as we walk by.  These people mean well, but are a constant reminder that my life isn't "normal," and they feel sad and sorry for us.  It is kind, but not always the reminder I need:-).


However, I have tough skin (I am a Shaw- for those who know what that means;-), and last week we got ready and walked out the door.


Battle one is always with my pharmacist.  Some days she is happy; some days she isn't.  Last week was a good day, so I felt great leaving with our pack of medicine for the week.  We headed to Target on a high note.  Battle 2 was somewhat unexpected.  I loaded up my stroller and a half with children, oxygen, and machines, and we tried to walk by the dollar section.  But there were so many things right there that would be perfect for Maggie's birthday party.  (BTW I am determined to give my daughter a proper 5 year old party this year...).  So we stopped and looked for a bit.  This was my fatal error because Cam became fussy, so we attracted extra unwanted attention and still had to get to the back of the store to get the right supplies for Cam's feeding.  I ended up pushing a stroller filled with stuff and holding the kids/oxygen. (I am sure there are other mother's out there saying "Hear ya Sister").  Target is always hard- lots of moms and kids- so the extra stress made me want to just go home.


But no!  I wanted desperately to get this gift for my friend- not just an IOU.  So to Bed, Bath, and Beyond we went.  There was no point in using the stroller with Cam's fussiness, so I just strapped on diaper bag, purse, oxygen (equivalent of at least 30 pounds of stuff), plus held Cam in one arm and Maggie's hand in the other.  I was close to tears just walking into the store.


But there, God showed us such mercy.  While I waited for the registry to print out, the employee (Ben I think...) sat with Maggie, who needed some attention at this point, and told her the most wonderful story about these "frogs in a can" (Some kind of cleaning supply I think) that they had sitting by the till.  She wanted to know if the frogs were real, and he told her about these flying frogs who talked and sent beautiful colors out behind them as they flew.  Anyone who knows my Maggie knows this was perfect for her!  


We set out to find a gift in better spirits thanks to his kindness. It got hard again as we wandered about, trying to find someone we could afford.  Eventually I found myself staring blankly at plastic kitchenware.  I found I couldn't go one step further with all this heavy stuff, so I literally dropped all my bags and we just huddled in the corner of B,B,&B for several minutes.  No one seemed to notice us, and eventually I found enough strength to strap on all my gear, pick up the kids, and keep going.  


We found something cute that we could afford, got back to the till to check out, and, ignoring the looks around us, were about to race back to the car when a woman stopped us.  I turned around with dread (knowing I was going to have to explain what was wrong with Cam again), when she asked just one simple question.  "May I know your baby's name?," she asked, "I would like to pray for him tonight."  That was it, and it was perfect.  God sent an angel to remind me, right in Bed, Bath, and Beyond, that He loves me, that I was not alone, and that He has great plans for Cam to manifest His glory.


So for those reading this who are looking to the road ahead, I hope this story helps you see what it will be like.  Hard and beautiful, but always seeing the glory of God right before your eyes.  Your face, like Moses', may always be shining (possibly because of your own tears:-), but what more could a child ask for than such love and attention from her Father?  And what more help could come in sorrow than knowing that we have a resurrection hope- our work will not be in vain!


p.s.
Laura writing here: I wanted to share this, which was on Evelyns facebook wall several weeks back - it just seemed to go along with the above story:


Evelyn wrote: “Did my big grocery run yesterday- in heavy rain, looking very pregnant, and carrying a 20 pound kid w/ O2 in my arms because he was so sick. Not a single person offered to help at any point during the day. Today, I made quick stop at Walmart, in sunshine, with Cam not actually hooked up to the O's. Joe- the special needs guy who collects the grocery carts- asked if I needed help. He asks me if he can help every time I go there. Joe gets my vote for "man of the year."


-----
Big sister Maggie and Cam
Laura here again...


I think Evelyn’s stories, her real-life stories, offer something for everyone to take away when reflecting on “CHD Awareness” - but it should not be pity. No heart-mom wants you to “pity” the miracle of a repaired-heart and the extra time (hopefully a LONG time) gifted to their child. “Heart Mom’s and Dad's” rise to the occasion of caring for them and sometimes the going gets very rough. These kids are warriors beyond their heart surgery - some CHD’s kiddos must battle hard with something as  “simple” as the common cold; but the CHDer’s mom’s and dad’s, they’ve got this...it’s their baby and believe me, they are okay in “not okay” land. (Your support and your care matter, they do need and appreciate that, just want to be clear, as I'm not saying they don't need family and friends to be with them and there for them...far from it.).


But I do love this story - and yet it’s sad... we are a funny culture. The boundaries we create surly are interesting - that it sometimes takes someone inherently less “tuned-in” to said culture to actually offer to help kinda puts us all to shame. However, sometimes, people "get it right" and give examples for all of us to follow. So, let's all aim for less hesitation, more bold acts of love - - lend a hand to an overwhelmed mom by helping with the kids, dare to ask the name of a child so you can pray for her or him and ask if you can “give a hand with that o2 tank” - and you can do it in honor of Cam!


And as you remember Gwen, I hope you will pause to be astonished at the well-working heart that formed perfectly in you or your child/ren in the first 7 weeks of existence; one long, appreciative-pause.


The formation of the heart, the process by which it grows into a four-chambered pumping machine is amazing to me - jaw-droppingly amazing - and that it ever forms correctly... ?!?!


Add to that, doctors who can repair the tiniest of hearts - it is an amazing world we live in. I look forward to seeing the funding for CHD research increase. I look forward to seeing that research flourish and unlock more secrets so that the CHD children of Gwen’s generation can be blessed with medical treatments that make today’s miracle-practices look archaic and clumsy.


For Gwen, for all those she introduced me to, I will continue to raise awareness and rally support for CHD causes. I count on not walking alone. And for that - to the friends and family I’m blessed with, thank you! 



HAPPY 3rd BIRTHDAY GWENYTH!

every day.

miss you... every day. 






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!