Thursday, March 16, 2017

Poetry. I don't know what else to do... I miss you seven years later my love. Your birthday is always a joyful time, even if I am welling with tears sometimes as I mark the day. Joy is the calling. It's supposed to be because death is conquered.  But let's just say, it doesn't feel that way to my heart. Hearts and minds don't always align. But I still know to go seek joy; if anything, I'm more convicted from your lifetime here - of how joyful we are not tended towards. How we miss it... I'm thinking of Our Town, and the end of the play (I think that's when the conversation happens). I don't want to miss it. I'll keep trying. Because love instructs well. And simply. And clearly. Unfailing.   

Last Night the Rain Spoke to Me

by Mary Oliver

Last night

the rain

spoke to me

slowly, saying,

what joy

to come falling

out of the brisk cloud,

to be happy again

in a new way

on the earth!

That’s what it said

as it dropped,

smelling of iron,

and vanished

like a dream of the ocean

into the branches

and the grass below.

Then it was over.

The sky cleared.

I was standing

under a tree.

The tree was a tree

with happy leaves,

and I was myself,

and there were stars in the sky

that were also themselves

at the moment

at which moment

my right hand

was holding my left hand

which was holding the tree

which was filled with stars

and the soft rain –

imagine! imagine!

the long and wondrous journeys

still to be ours.


Happy 7th Birthday, Gwenyth. I miss you in my arms. In our lives. I remember the joy of the day you were born. (One day we'll post the video. I know I will one day.)

Wednesday, January 11, 2017

Don't wanna get into it...but I did. And I'm done. But here it is.

Skepticism isn't a bad thing. In fact, I believe it's good for science -- at its root, ultimately and ideally, is curiosity. So as this news spreads let's remember the facts:

Robert Kennedy Jr. himself, said:
“I’m pro-vaccine. I’ve had all six of my kids vaccinated.”

Most headlines today seem to have it incorrect if we are to believe Robert Kennedy's own words that he is NOT anti-vaccine. Personally, I believe this mischaracterization could be harmful at worst and deeply confusing to the conversation, at best. 

To correctly characterize RFK's stance (which I believe Is important and worth the time to do to help those on the fence avoid being guided by misinformation) he is a pro-vaccine skeptic who has issue with CDC integrity....

Short summary (if I understand correctly) - RFK specifically has issue with the CDC's science (research) and has concerns only about the recommended schedule and the ingredients of vaccines. It is worth keeping in the front of our collective minds that RFK Jr. truly believes vaccines are important and that they save lives.

His pro-vaccine stance is modified by this statement:  “I think we ought to have state and federal policies that maximize vaccine coverage of the population. But I think we have to begin the process by making sure the vaccines are safe, efficacious and that the regulatory agency which recommends vaccines … and monitors them has integrity and credibility, and, unfortunately, that is not the case at the moment.”

(Essentially, from what I understand, RFK Jr believes the CDC is potentially corrupt and not producing good science due to conflict of interest. There's a lot to unpack there but I'm gonna leave it at that.)

So, RFK Jr. finds that all the scientific studies by the CDC (he mentions nothing else about vaccine safety studies elsewhere) do no live up to his standards. As I see it, with RFK Jr. being a prominent public figure and the assumption, that based on what he didn't like about previous studies he will design studies that he can fully get behind and, being that the stakes are so high, I say go for it... I trust firmly that on the "other side" of his panel (should it be formed) and their approved research, Kennedy and other pro-vaccine skeptics will sleep better at night and the bigger picture, more children and adults will be spared these diseases, which makes it worth it to me.

I'm aware some folks out-there believe everyone should build their immunity naturally... and that's a different stance than the skeptical pro-vaccine bunch. And I'm sure they're are a zillion other reasons why some will still stand (and always stand) against having their child receive vaccines... and that's not with whom this issue lays.

Other important facts I feel are worth considering:
Multiple respected medical groups and organizations stand by the most current research that concludes there is no relation between autism and vaccines. The research that concluded there was such evidence was debunked and removed from the Lancet.

Autism Speaks links to this article:
And this video:

Now, sadly, what muddies the water is the fact that Kennedy historically is quoted as saying some anti-vaccine leaning and frankly seemingly anti-vac supporting things, which I believe, when we read these statements we need to read and then say out loud ... "he vaccinated all six children."

To further ensure this fact, here's what he told a reporter after his meeting with Trump.

"I am for vaccines. I have been tracking mercury in fish for 30 years and nobody has called me anti-fish. I am pro-vaccine. I had all my kids vaccinated. I think vaccines save lives. But we are also seeing an explosion in neurodevelopmental disorders and we ought to be able to do a cost benefit analysis and see what’s causing them. We ought to have robust, transparent science and an independent regulatory agency. Nobody is trying to get rid of vaccines here.  I just want safe vaccines."

So again - his issue seems to be with the integrity of the CDC specifically.

Should we spend money on this as tax payers?? As I said, I am for it if nothing else to lay this issue to rest once and for all (am I skeptical about should this panel concur with the myriad of studies that support the current contents and recommended schedule of vaccines are safe this issue would be laid to rest...? Yes, very skeptical (jaded?). But I'm an eternal optimist I guess...and just the mere thought that maybe ...just maybe it would put this to bed it seems worth it).

And finally, no. I wasn't born yesterday. I don't think we ought to blindly trust the information available to us....goodness no.

But...I like how this writer explains where I land on this issue so well: "Vaccine skeptics often point to that alleged connection between vaccines and autism, in which a preservative called thimerosal is a chief culprit. But that link has been studied and debunked so many times that for it to actually exist, the medical and public health community would have to be engaged in a coverup conspiracy of global proportions."

I can't dignify Trumps comments - I just can't stomach him (sorry to those who are fans...we all have our points of view...and I am just can't ... too many issues with him in my book...). I don't know a ton about RFK, I certainly have some opinions based on the little bits I know from the media, however I am far more willing to hear him out and listen to what he has to say as he has a proven record of doing something good for humanity -- I grew up near the Hudson River and Kennedy's impressive work there stands out to me.

"Through the actions of the Hudson Riverkeeper and others, the Hudson River has become an international model for ecosystem recovery. Spurred by this tremendous success, Kennedy founded the Water Keeper Alliance to support approximately 75 Keeper organizations. He serves as President of the organization."

Finally, because I don't really get it all and I found this helpful here is some vaccine info from the CDC (granted this is only useful if you trust the CDC...but I'm outta time)

Lastly the news articles I quoted above:

Not quoted here, but read in November and in my head as I read today's headlines:

Sunday, April 17, 2016

A Saddend Heart

This has been exactly my thought and kinda the end of where all my grief always leads - that if we can love this much and love is from God -- then, wow...

"What a proof of the Divine tenderness is there in the human heart itself, which is the organ and receptacle oft so many sympathies! When we consider how exquisite are those conditions by which it is even made capable of so much suffering--the capabilities of a child's heart, of a mother's heart,--what must be the nature of Him who fashioned its depths, and strung its chords."

 -Edwin H Chapin

Today I write as I mourn two losses here, in our little CHD world.

On Friday, my shining star, the child who showed me the life Gwen could have, whose mom walked so closely with me and helped me find solid footing as I planned surgery for my unborn daughter...on Friday, April 8th, Gabe Chester died.

(These words here are not what I want on this blog. I don't want to keep typing.)

It was sudden. He was enjoying his time skateboarding. All we can guess is his heart just was done - arrhythmia struck and it won (thankfully he was at a middle school near his house and his collapse was witnessed and CPR and and AED were available quickly - and therefore all was done that could have been done).

On the following Monday, a precious 2 and a half month old baby boy, Andre Showalter, a HLHS CHD Warrior suddenly passed away.

Words fail. My heart aches for each family. I feel inadequate and lacking... all I know is each child was so loved... I know each family can all survive this loss -- but how desperately, desperately I don't want them to have to endure this type of heartahce. And there it is, the familiar limits, of being human - you can't do a darn thing about it, this is an ever expanding place -- and you can't do anything about who enters; at any time, it may be someone you call a dependable friend or some new family you've yet to meet but have cared for from a distance.

In both cases, nothing indicated any issue - both children were doing so well...

And I'm starting to wonder if that is more the norm in CHD land... "the plane falls out of the sky on a clear blue day..."

The landscape of CHD has been redrawn for me. Like minecraft creating a new map, I've landed in a completely new world. And for now, all I know to do is to keep to the task at hand, even as I don't recognize this place and my doubts are heavy and my mind weary, I will keep working here, on CHD awareness, on our new MLHSV projects and on all the tasks at hand, if only because I'm too knee deep in it and there isn't any way out now but forward.

But is there anything really we can do? Does research matter? - does God just have it all planned out and he is amused that I'm thinking anything is going to help these kids have longer lives?

I guess really, MLHSV isn't about research and I know trying to offer comfort and support and ultimately, confidence, matters -- to some degree anyway... so I'll keep at it... but the world - the landscape feels foreign and all wrong - these two families were never supposed to be over here...not here...on "this" side of things.

Monday, January 12, 2015

An Article Worth Sharing

Thank you Myers sharing, you found gold. Now I'm with you tonight..., I thought I could read it and keep a straight face so to speak ...but always I know, it's okay, because this is love, I feel this way be caused of love...and in some weird way I'm glad I can still crash this hard. We loved them. This is for the many people I know who are missing a loved one that was a big part of their life...It's an excellent article - spot on!

"She was just very sad, consumed by sorrow, but not because she was grieving incorrectly. The depth of her sadness was simply a measure of the love she had for her daughter.

.. To do so  [achieve closure] would be to lose a piece of a sacred bond.

I often tell them that the size of their grief corresponds to the depth of their love....

 Sadness, regret, confusion, yearning and all the experiences of grief become part of the narrative of love for the one who died."


And I know that by allowing that reality to be as it is, then I'm able to be with it rather than fight it...and it has less power to consume my soul in darkness and take me down completly.

So so so has been in my head that I want to write about grief...but there just isn't time...

But this article is a lot of what I've bee wanting to shout from the roof tops... Grief is horrible but it's human, it's a form of love -- it's deep sadness not depression... 

And no. I will neverbe able to make peace with the 20 / 20 hind sight and that too, does not mean I've failed to grieve right. The list is long...of real actions I could have done... and I'm not torquing myself with it. I'm living with it all --- the narrative. Because it's real and true and her story.

And this grief won't really change -- but  that's okay. I am familiar and friendly with it now. It's part of my daily existence and it is far less likely to exhaust me and crush me only because I'm more accepting of all aspects and wise to its ways. 

And always I know and remind myself -- it's because of love.

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!  :)"

"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."


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


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 

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!

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’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! 


every day.

miss you... every day.