Ten years loom and as always seems to be the case, I find myself struggling the most in the days ahead of the anniversary  - be it her birthday or death day. Today I just happened to this blog and read the first post I wrote after she was born.

I know this may sound strange…but I am not sure, in ten years time, that I ever read this post after I wrote it. Either my memories have been all wrong or they have morphed over time unawares to myself. I honestly thought I held her right after birth, before they whisked her away. I did hold her, very soon after birth - but not until after they did a few things first. I don’t remember the wires when I first held her. It is so funny what you remember and what you don’t. I do know, it all was such a whirlwind after that - everything after is blurs of hospital days and transitioning to home while still very shell-shocked but not quite realizing it. I wish I could go back and do better, not just so that I have three kids here with me now, but everything, even if I still ended up right here. I would be better at being present, less fearful and more confident in my role as a heart mom. Hindsight is a cruel saboteur, an opportunist friend of grief that can cut you off at the knees, even ten years out when you’ve become wise to the wiles of grief and you are familiar with the never-ending trails that your heart can walk on still, still trying to fix it all, knowing they lead in desperate circles and only drain your soul. I move through it and I do come out on the other side, but not without it winning for a little while and pulling me all the way under and flooding my soul with grief as fresh as the first as the first hours, when everything changed. 

Here's that post...and how it breaks my heart for that poor mom, to know, not all prayers are answered the way we hope and pray...

http://www.gwenythcarpenter.com/search/label/Gwen%27s%20Birthday

They say that these are not the best of times

But they're the only times I've ever known
And I believe there is a time for meditation
In cathedrals of our own

Now I have seen that sad surrender in my lovers eyes
I can only stand apart and sympathize
For we are always what our situations hand us
Its either sadness or euphoria

So we'll argue and we'll compromise
And realize that nothing's ever changed

For all our mutual experience
Our separate conclusions are the same
Now we are forced to recognize our inhumanity
A reason coexists with our insanity
Though we choose between reality and madness

Its either sadness or euphoria
How thoughtlessly we dissipate our energies
Perhaps we'll help fulfill each other's fantasies
And as we stand upon the ledges of our lives with our respective similarities
Its either sadness or euphoria  (Lyrics by Billy Joel)

----
I love springtime.

I do...

But it's when I lost you... and every cell seems to remember.

And all the losses... now of friends children too...

They all overwhelm my heart sometimes.

The world is so beautiful. But so fierce. Some flowers bloom and bloom...some you miss if you don't step outside that day....

A Double Anniversary of a CHD Diagnosis

One thing you may notice if you follow "heart families" is that they always remember "that day." Today marks both days of "learning" the news. Eight years ago, on the 19th of November we went to find out if Lil would have a little brother or litter sister. She would have a sister we learned. But we left this appointment devastated and confused. All we knew was that something was wrong with her heart and that we needed to be seen at UVA's Fetal Diagnostic Center asap.

The Monday before Thanksgiving was our UVA appointment. That was the day we headed over the mountain for a higher level ultrasound and fetal Echo. She didn't have a name then. I was 21 weeks pregnant. I started a blog in January to keep up with the medical details and keep families and friends informed, "We knew something was wrong and we were there to find out what. Our hope was that it was nothing complicated, serious, or life-threatening."
I remember the piano. There was a grand piano in the lobby and someone was there playing it that day. Outside the second floor waiting room was a hallway open to the lobby below and I was grateful for the beautiful music to help soften the blow as we began to absorb the gravity of new direction we were facing.

The Monday before Thanksgiving 2009 was the day the happy, blissful visions of bringing a second child into the world in an instant, were replaced with total uncertainty. Our prayers were that she would make it to birth. Please, God, let her make to it birth.

I'm still grateful there WAS hope and I will always be in awe of the miracle of modern medicine. Her heart would never be "fixed." But it could be tinkered with - amazing surgeries could bring her through her childhood. All of her life she would be a CHD Warrior...but survival was possible. And so we hoped for the survival of our child and headed into the darkness.

---
I find anniversaries of this nature give me cause to reflect on Gwen and her life and her death...and other untimely deaths of loved ones.

And in short what I notice the most is that I experience everything differently now, and it's not a bad thing (sometimes just exhausting, sometimes it's not good, but mostly it is clarifying and simplifying to "look through tears").

My favorite book that has been my "go to," is Lament for a Son by Nicholas Wolterstorff. Every page is so spot on for me...and I'll end this long ramble with a few favorite passages from his book (which is hard to narrow down b/c I mean it when I say I love every page):

“Rather often I am asked whether the grief remains as intense as when I wrote. The answer is, No. The wound is no longer raw. But it has not disappeared. That is as it should be. If he was worth loving, he is worth grieving over. Grief is existential testimony to the worth of the one loved. That worth abides. So I own my grief. I do not try to put it behind me, to get over it, to forget it… Every lament is a love-song.”

“But the pain of the no more outweighs the gratitude of the once was. Will it always be so? I didn’t know how much I loved him until he was gone. Is love like that?” “How is faith to endure, O God, when you allow all this scraping and tearing on us? You have allowed rivers of blood to flow, mountains of suffering to pile up, sobs to become humanity's song--all without lifting a finger that we could see. You have allowed bonds of love beyond number to be painfully snapped. If you have not abandoned us, explain yourself.
We strain to hear. But instead of hearing an answer we catch sight of God himself scraped and torn. Through our tears we see the tears of God.” 
― Nicholas Wolterstorff, Lament for a Son

“Don’t say it’s not really so bad. Because it is. Death is awful, demonic. If you think your task as comforter is to tell me that really, all things considered, it’s not so bad, you do not sit with me in my grief but place yourself off in the distance away from me. Over there, you are of no help.”

More from Wolterstorff can be found here: https://www.goodreads.com/work/quotes/143026-lament-for-a-son

I’m going to do it once…then be done. 

But - I’ve been thinking a lot about the “Kimmel Test” and preexisting conditions- and yes, it’s personal (but isn’t that where you learn a lot - when you are in the thick of it - when the unimaginable happens to you?).  


I’m looking at this week seven years ago — May 11, 2010, Gwen’s heart-buddy, Zoe Lihn was born at CHOP and had open heart surgery at 15 hours old. 

Three days later, back home in Virginia, at the local hospital while doctors were preparing her to get onto the helicopter to head to UVA because of some worrying symptoms, Gwen’s tiny-little heart stopped beating.

Zoe and her big sister Emmy

Am I supposed to feel like I dodged a bullet? 

Let’s get right down to it - were we fiscally irresponsible to choose to bring her into this world? 

After all, I learned of Gwen’s preexisting heart condition when I was 20 weeks pregnant. Zoe’s Congenital Heart Defect is Hypoplastic Left Heart (you can hear Nancy Pelosi share about Zoe here (at min 1.56).). Gwen’s CHD was Truncus Arteriosus. They are some of the most expensive CHDs. 

So again, I ask - should we be grateful that we “got off the hook” and here we are, seven years later and we don’t loose a single night of sleep worrying that we could go bankrupt because of our child’s healthcare needs should the healthcare law change? 

After Jimmy Kimmel shared a story all too familiar to thousands of parents, CHDs were suddenly in the spotlight and he mentioned correctly, his newborn baby's CHD, Tetralogy of Fallot, is considered a "preexisting condition."  

So the question began to echo - do kids born with CHD not get care if their parents cannot pay? 

The answer; it's more nuanced than that, and a little less grim (thank goodness). 

However, I encourage you to read this and you’ll see where CHD families are coming from… and why preexisting conditions are an huge issue, and why CHD families have the right to be concerned:
What Happened to Kids Like Jimmy Kimmel's Son Without Obamacare (The Affordable Care Act/ACA). Dr. Zahan also offers a excellent account of the "issue" surrounding preexisting conditions and CHD patients. (He is the Kimmel family's Dr. Spray. Dr. Spray worked on both Gwen and Zoe and thousands of others.*) 

And, this is very lengthy, but it’s all very well explained here. (In summary; Trump's claim that 'Pre-existing conditions are in the bill,' "glosses over the fact that the bill weakens the ACA protections against higher premiums and less-generous benefit plans." However, "Sen. Schumer, meanwhile, was wrong to say, that the bill goes 'back to the day when insurance companies could deny coverage to those with pre-existing conditions.' Insurers would still be required to offer plans to anyone regardless of pre-existing conditions, although they could in some circumstances charge higher premiums based on health status.")

As I see it - we should be honored to all pull our resources together to provide for these amazing kids (and all fellow citizens who face complex health issues.) 

“We have amazing innovation and ability to save infants that used to die at birth…Do we want to go back to making them uninsurable?" According to, Linda Bergthold, "Doctors remember it as a terrifying time, many knowing patients who actually died for lack of coverage, contrary to what Rep. Raul Labrador said this weekend when he promised no one dies from lack of health care."

And so when you read things like this; "Empathy Distraction in Healthcare Debate"— I hope you will see, these are real stories, real families, real kids - not distractions.


And here’s where I land on this "issue" — because life, nope, it’s not fair - some kids are born with heart defects, some people have to pay for things they are opposed to; — no rose gardens here and no, definitely not fair; “Living in a civilized society means we all share in the cost and responsibility. Living in a civilized society also means we all pay for things we find morally objectionable – conservatives and liberals alike.”

And finally, I just can’t get it out of my head that Trump mentioned he thinks Australia’s healthcare is better than ours. (He may have a point: "Australia's health care system is mostly funded by the government while relying on private health insurance for some services...")


“Whatsoever You Do” by artist Timothy Schmalz



Post Script Notes for further reading:

*These surgeons are busy - after all CHD is the number one birth defect in the world. In developing nations CHD is not a leading cause of infant death. In the U.S. where we are fortunate enough that our infants are not dying from sepsis and diarrhea (as the link provided reveals) CHD is one of the leading causes of infant illness and mortality.

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.)

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: https://www.autismspeaks.org/science/science-news/no-mmr-autism-link-large-study-vaccinated-vs-unvaccinated-kids
And this video:
http://jamanetwork.com/learning/video-player/10234769

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."

http://keepersprings.com/about/our-founders/

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)
https://www.cdc.gov/vaccines/hcp/patient-ed/conversations/downloads/vacsafe-thimerosal-color-office.pdf

Lastly the news articles I quoted above:
https://rewire.news/article/2017/01/09/trump-says-facts-facts-anti-science-agenda-begs-differ/

https://www.google.com/amp/s/thinkprogress.org/amp/p/fa21f259a2a9?client=safari

https://www.google.com/amp/mobile.nytimes.com/2017/01/10/us/politics/anti-vaccine-activist-trump-immunizations.amp.html#pt0-574581

http://www.sciencemag.org/news/2017/01/exclusive-qa-robert-f-kennedy-jr-meeting-trump-proposed-vaccine-commission

Not quoted here, but read in November and in my head as I read today's headlines: https://www.statnews.com/2016/11/09/donald-trump-win-science-medicine/