tag:blogger.com,1999:blog-3061075245325336162024-03-14T02:18:04.994-04:00Gwenyth Graham CarpenterForever in our Hearts ~ March 17th 2010 - May 14th 2010Myershttp://www.blogger.com/profile/16836328169810563730noreply@blogger.comBlogger146125tag:blogger.com,1999:blog-306107524532533616.post-14024487508996568722020-03-06T15:06:00.002-05:002020-03-06T15:06:54.663-05:00<div class="p1" style="font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
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.</div>
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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.<span class="Apple-converted-space"> </span></div>
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<span class="Apple-converted-space">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...</span></div>
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<span class="s1" style="text-decoration-line: underline;"><a href="http://www.gwenythcarpenter.com/search/label/Gwen%27s%20Birthday">http://www.gwenythcarpenter.com/search/label/Gwen%27s%20Birthday</a></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-306107524532533616.post-72611993912666891242019-04-18T17:30:00.003-04:002021-05-21T10:21:13.506-04:00<div>They say that these are not the best of times</div>
But they're the only times I've ever known<br />
And I believe there is a time for meditation<br />
In cathedrals of our own<br />
<br />
Now I have seen that sad surrender in my lovers eyes<br />
I can only stand apart and sympathize<br />
For we are always what our situations hand us<br />
Its either sadness or euphoria<br />
<br />
So we'll argue and we'll compromise<br />
And realize that nothing's ever changed<br />
<br />
For all our mutual experience<br />
Our separate conclusions are the same<br />
Now we are forced to recognize our inhumanity<br />
A reason coexists with our insanity<br />
Though we choose between reality and madness<br />
<br />
Its either sadness or euphoria<br />
How thoughtlessly we dissipate our energies<br />
Perhaps we'll help fulfill each other's fantasies<br />
And as we stand upon the ledges of our lives with our respective similarities<br />
Its either sadness or euphoria (Lyrics by Billy Joel)<br />
<br />
----<br />
I love springtime.<br />
<br />
I do...<br />
<br />
But it's when I lost you... and every cell seems to remember.<br />
<br />
And all the losses... now of friends children too...<br />
<br />
They all overwhelm my heart sometimes.<br />
<br />
The world is so beautiful. But so fierce. Some flowers bloom and bloom...some you miss if you don't step outside that day....<br />
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<br />Laurahttp://www.blogger.com/profile/00920522444099892494noreply@blogger.com0tag:blogger.com,1999:blog-306107524532533616.post-63068347173455663442018-11-19T09:42:00.003-05:002018-11-19T16:34:48.165-05:00A Double Anniversary of a CHD Diagnosis <div class="" data-block="true" data-editor="998c2" data-offset-key="4v7eu-0-0" style="background-color: white; color: #1c1e21; font-family: system-ui, -apple-system, system-ui, ".SFNSText-Regular", sans-serif; font-size: 14px; white-space: pre-wrap;">
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<span data-offset-key="4v7eu-0-0" style="font-family: inherit;">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. </span></div>
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<span data-offset-key="dg7c3-0-0" style="font-family: inherit;">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, "<a href="http://www.gwenythcarpenter.com/2010/01/gwenyths-story-begins-introduction.html" target="_blank">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."</a> </span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3J5bZHCQjAaOenE1cE9b3mzTnAwVo4K4FvtYivZ3siB1UmzgjFaStbIz1TKB172Y1gkI1R4NqdLN7Wceof5VVpWis9wvIetCrZx1sXMj43BLx5eV0InOjo9u2XqOFdG8vfh-MKE4o5cDx/s1600/Bright+Gwen+Eyes.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="" border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3J5bZHCQjAaOenE1cE9b3mzTnAwVo4K4FvtYivZ3siB1UmzgjFaStbIz1TKB172Y1gkI1R4NqdLN7Wceof5VVpWis9wvIetCrZx1sXMj43BLx5eV0InOjo9u2XqOFdG8vfh-MKE4o5cDx/s320/Bright+Gwen+Eyes.jpg" title="She was here. She was real. I'm grateful for two months and that we got to know that much of her." width="229" /></a><span data-offset-key="cig4f-0-0" style="font-family: inherit;">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. </span></div>
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<span style="font-family: inherit;">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.</span></div>
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<span style="font-family: inherit;">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.</span></div>
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<span style="color: #1c1e21; font-family: inherit;"><span style="font-size: 14px; white-space: pre-wrap;">I find anniversaries of this nature give me cause to reflect on Gwen and her life and her death...and other </span></span><span style="color: #1c1e21; font-family: , , , , sans-serif;"><span style="font-size: 14px; white-space: pre-wrap;">untimely</span></span><span style="color: #1c1e21; font-family: inherit;"><span style="font-size: 14px; white-space: pre-wrap;"> deaths of loved ones.</span></span></div>
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<span style="font-family: inherit;">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"). </span></div>
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<span data-offset-key="2g62-0-0" style="font-family: inherit;">My favorite book that has been my "go to," is<i> Lament for a Son </i>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):</span><br />
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<span data-offset-key="4q798-0-0" style="font-family: inherit;">“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. </span><span style="font-family: inherit;">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.”</span></div>
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</span> <span data-offset-key="4v7eu-0-0" style="font-family: inherit;"><span data-text="true" style="font-family: inherit;">“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?” </span></span><span data-offset-key="4v7eu-0-0" style="font-family: inherit;"> </span><span data-offset-key="4v7eu-0-0" style="font-family: inherit;"><span style="color: #181818; font-family: "merriweather" , "georgia" , serif; white-space: normal;">“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.</span></span><span data-offset-key="4v7eu-0-0" style="font-family: inherit;"><br style="color: #181818; font-family: Merriweather, Georgia, serif; white-space: normal;" /></span><span data-offset-key="4v7eu-0-0" style="font-family: inherit;"><span style="color: #181818; font-family: "merriweather" , "georgia" , serif; white-space: normal;">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.” </span></span><br />
<span data-offset-key="21egf-0-0" style="font-family: inherit;">― Nicholas Wolterstorff, Lament for a Son</span></div>
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<span data-offset-key="4v7eu-0-0" style="font-family: inherit;">“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.” </span></div>
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</span><span data-offset-key="f2ps3-0-0" style="font-family: inherit;">More from Wolterstorff can be found here: https://www.goodreads.com/work/quotes/143026-lament-for-a-son</span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-306107524532533616.post-47709956149722720912017-05-14T14:24:00.001-04:002017-05-14T14:24:16.667-04:00<br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcsYNXAcuPV2Hs-TW10OjAH4HqwCHwKS3RE9FBJby9ZxRdEcTUl-rw_0KqIGq38dYgcbp5F7LaW-msy_lGEvyrA_g4_CC_4EhieHlBW0V2uEPuQBT8uzEeVmrOqanTfTbDN7HNCk5DPbey/s640/blogger-image-1211209190.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcsYNXAcuPV2Hs-TW10OjAH4HqwCHwKS3RE9FBJby9ZxRdEcTUl-rw_0KqIGq38dYgcbp5F7LaW-msy_lGEvyrA_g4_CC_4EhieHlBW0V2uEPuQBT8uzEeVmrOqanTfTbDN7HNCk5DPbey/s640/blogger-image-1211209190.jpg"></a></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-306107524532533616.post-26776772990081370522017-05-08T00:48:00.001-04:002018-11-19T08:45:56.436-05:00<br />
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<span style="font-family: "trebuchet ms" , sans-serif;"><span style="font-size: small;">I’m going to do it once…then be done. </span></span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;"><span style="font-size: small;">But - I’ve been thinking a lot about the “<a href="http://www.cnn.com/2017/05/05/politics/senator-cassidy-health-bill-jimmy-kimmel-test-cnntv/">Kimmel Test</a>” and <a href="http://www.huffingtonpost.com/entry/what-is-a-pre-existing-condition-anyway_us_590f60c8e4b046ea176aec7e">preexisting conditions</a>- 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?). </span></span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;"><span style="font-size: small;"> I’m looking at this week seven years ago — May 11, 2010, Gwen’s heart-buddy, <a href="http://thelihns.blogspot.com/2011/03/gwenyth-graham-carpenter.html">Zoe Lihn</a> was born at CHOP and had open heart surgery at 15 hours old. </span></span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;"><span style="font-size: small;"><span style="font-family: "trebuchet ms" , sans-serif;"><span style="font-family: "trebuchet ms" , sans-serif;">Three <span style="font-family: "trebuchet ms" , sans-serif;">days later</span></span></span>, 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. </span></span><br />
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<tr><td class="tr-caption" style="text-align: center;">Zoe and her big sister Emmy</td></tr>
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<span style="font-family: "trebuchet ms" , sans-serif;"><span style="font-size: small;">Am I supposed to feel like I dodged a bullet? </span></span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;"><span style="font-size: small;">Let’s get right down to it - were we fiscally irresponsible to choose to bring her into this world? </span></span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;"><span style="font-size: small;">After all, I learned of Gwen’s preexisting heart condition when I was 20 weeks pregnant. Zoe’s Congenital Heart Defect <span style="font-family: "trebuchet ms" , sans-serif;">is</span> Hypoplastic Left Heart (</span></span><span style="font-family: "trebuchet ms" , sans-serif;"><span style="font-size: small;"><span style="font-family: "trebuchet ms" , sans-serif;"><span style="font-size: small;"><span style="font-family: "trebuchet ms" , sans-serif;">y</span>ou can hear Nancy Pelosi share about Zoe <a href="https://www.facebook.com/stacey.lihn/videos/10212808019859247/">here</a> (at min 1.56).)</span></span>. Gwen’s CHD was Truncus Arteriosus. <a href="http://conqueringchd.org/wp-content/uploads/2015/05/PCHA-Fact-Page.pdf">They are some of the most expensive CHDs</a>. </span></span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;"><span style="font-size: small;">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? </span></span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;"><span style="font-size: small;">After <a href="https://www.youtube.com/watch?sns=fb&v=MmWWoMcGmo0&app=desktop">Jimmy Kimm<span style="font-family: "trebuchet ms" , sans-serif;">el</span> shared a story</a> all too familiar to <a href="http://conqueringchd.org/open-letter-jimmy-kimmel/#comments">thousands of parents</a>, CHDs were suddenly in the spotlight and he mentioned correctly, his newborn baby's CHD, Tetralogy of Fallot, is considered a "preexisting condition." </span></span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;"><span style="font-size: small;">So the question began to echo - do kids born with CHD not get care if their <span style="font-family: "trebuchet ms" , sans-serif;">parents</span> cannot pay? </span></span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;"><span style="font-size: small;">The answer; it's more nuanced than that, and a little less grim (thank goodness). </span></span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;"><span style="font-size: small;">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:</span></span><br />
<span style="font-family: "trebuchet ms" , sans-serif;"><span style="font-size: small;"><a href="http://www.thedailybeast.com/articles/2017/05/07/what-happened-to-kids-like-jimmy-kimmel-s-son-without-obamacare">What Happened to Kids Like Jimmy Kimmel's Son Without Obamacare (The Affordable Care Act/ACA</a>). Dr. Zahan also offers a <a href="https://mic.com/articles/176248/here-s-what-the-doctor-who-treated-jimmy-kimmel-s-baby-wants-you-to-know-about-health-care#.pKtN7Smht">excellent account </a>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.*) </span></span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;"><span style="font-size: small;">And, this is very lengthy, but it’s all very well explained <a href="https://www.usatoday.com/story/news/politics/2017/05/04/fact-check-pre-existing-conditions-debate/101283530/">here</a>. (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, </span></span><span style="font-family: "trebuchet ms" , sans-serif;"><span style="font-size: small;">"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.")<br /><br />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.) </span></span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;"><span style="font-size: small;">“<a href="http://thehill.com/blogs/pundits-blog/healthcare/332226-why-are-fiscal-conservative-opposed-to-single-payer-healthcare">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?</a>" <span style="font-family: "trebuchet ms" , sans-serif;">According to, Linda Bergthold, "</span></span></span><span style="font-family: "trebuchet ms" , sans-serif;"><span style="font-size: small;"><span style="font-family: "trebuchet ms" , sans-serif;">Doctors remember it as a<a class="bn-clickable" data-beacon-parsed="true" data-beacon="{"p":{"lnid":"terrifying time","mpid":22,"plid":"http://www.nbcnews.com/health/health-care/what-are-pre-existing-conditions-what-would-gop-bill-do-n754836"}}" href="http://www.huffingtonpost.com/entry/what-is-a-pre-existing-condition-anyway_us_590f60c8e4b046ea176aec7e" rel="nofollow" target="_blank"> terrifying time</a>, many knowing patients who actually died for lack of coverage, contrary to what Rep. Raul Labrador <a class="bn-clickable" data-beacon-parsed="true" data-beacon="{"p":{"lnid":"said","mpid":23,"plid":"http://www.slate.com/blogs/the_slatest/2017/05/07/rep_raul_labrador_nobody_dies_because_they_don_t_have_access_to_health_care.html"}}" href="http://www.slate.com/blogs/the_slatest/2017/05/07/rep_raul_labrador_nobody_dies_because_they_don_t_have_access_to_health_care.html?wpsrc=huffpo" rel="nofollow" target="_blank">said </a>this weekend when he promised no one dies from lack of health care."<span style="font-family: "trebuchet ms" , sans-serif;"> </span></span><br /><br />And so when you read things like this; "<a href="http://www.timesrecordnews.com/story/opinion/2017/05/07/empathy-distraction-health-care-debate/101410288/">Empathy Distraction in Healthcare Debate</a>"— I hope you will see, these are <a href="http://www.slhunterphotography.com/blog/2017/2/zipper-strong-chd-awareness">real stories, real families, real kids</a> - not distractions. </span></span><br />
<span style="font-family: "trebuchet ms" , sans-serif;"><span style="font-size: small;"><br /> 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; “<a href="https://www.usnews.com/opinion/blogs/laura-chapin/2015/06/08/paying-for-other-peoples-health-care-is-american">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.</a>” <br /><br />And finally, I ju<span style="font-family: "trebuchet ms" , sans-serif;">st </span>can’t get it out of my head that <a href="http://www.cnn.com/2017/05/04/politics/trump-us-australia-health-care/">Trump mentioned he thinks Australia’s healthcare is better than ours</a>. (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...") </span></span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEdEUUhQ8KFc6f30PPhcfa83vgSxSHERowa_ixraBebJcpI77LAaRpvL9F-pplPQsiw6PBty3-lQa99nfsQZXO8gR33oShc8Mna1B1pXZEi2f2jLTumzNL6cq0wXYroZfnCoUkzq67ZNdN/s1600/63893.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEdEUUhQ8KFc6f30PPhcfa83vgSxSHERowa_ixraBebJcpI77LAaRpvL9F-pplPQsiw6PBty3-lQa99nfsQZXO8gR33oShc8Mna1B1pXZEi2f2jLTumzNL6cq0wXYroZfnCoUkzq67ZNdN/s320/63893.jpeg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span class="irc_su" dir="ltr" style="text-align: left;"><a href="http://www.npr.org/2014/04/13/302019921/statue-of-a-homeless-jesus-startles-a-wealthy-community">“Whatsoever You Do”</a> by artist Timothy Schmalz</span><br />
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<span class="irc_su" dir="ltr" style="text-align: left;">Post Script Notes for further reading: </span><br />
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<span class="irc_su" dir="ltr" style="text-align: left;"><span style="font-family: "trebuchet ms" , sans-serif;"><span style="font-size: small;">*These surgeons are busy - after all CHD is the number one birth defect in the <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3721933/">world</a>. 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 </span></span></span><span class="irc_su" dir="ltr" style="text-align: left;"><span style="font-family: "trebuchet ms" , sans-serif;"><span style="font-size: small;"><span class="irc_su" dir="ltr" style="text-align: left;"><span style="font-family: "trebuchet ms" , sans-serif;"><span style="font-size: small;">(as the link provided reveals</span></span></span>) CHD is one of the leading causes of infant illness and mortality. </span></span></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"></span><span style="font-family: "trebuchet ms" , sans-serif;"><span style="font-size: small;"><br /></span></span>Laurahttp://www.blogger.com/profile/00920522444099892494noreply@blogger.com0tag:blogger.com,1999:blog-306107524532533616.post-66026474382684401952017-03-16T22:23:00.001-04:002017-03-16T22:23:05.385-04:00<br />
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<i> Our Town</i>, 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. <br />
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<b>Last Night the Rain Spoke to Me</b><br /><br />by Mary Oliver<br /><br />Last night<br /><br />the rain<br /><br />spoke to me<br /><br />slowly, saying,<br /><br />what joy<br /><br />to come falling<br /><br />out of the brisk cloud,<br /><br />to be happy again<br /><br />in a new way<br /><br />on the earth!<br /><br />That’s what it said<br /><br />as it dropped,<br /><br />smelling of iron,<br /><br />and vanished<br /><br />like a dream of the ocean<br /><br />into the branches<br /><br />and the grass below.<br /><br />Then it was over.<br /><br />The sky cleared.<br /><br />I was standing<br /><br />under a tree.<br /><br />The tree was a tree<br /><br />with happy leaves,<br /><br />and I was myself,<br /><br />and there were stars in the sky<br /><br />that were also themselves<br /><br />at the moment<br /><br />at which moment<br /><br />my right hand<br /><br />was holding my left hand<br /><br />which was holding the tree<br /><br />which was filled with stars<br /><br />and the soft rain –<br /><br />imagine! imagine!<br /><br />the long and wondrous journeys<br /><br />still to be ours.<br />
<br />
----<br />
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<br />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.) <br />Unknownnoreply@blogger.com16tag:blogger.com,1999:blog-306107524532533616.post-8150165224449961582017-01-11T11:57:00.000-05:002017-01-11T12:07:28.457-05:00Don'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:<br />
<br />
Robert Kennedy Jr. himself, said:<br />
“I’m pro-vaccine. I’ve had all six of my kids vaccinated.” <br />
<br />
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. <br />
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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.... <br />
<br />
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.<br />
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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.”<br />
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(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.)<br />
<br />
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.<br />
<br />
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.<br />
<br />
Other important facts I feel are worth considering:<br />
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.<br />
<br />
Autism Speaks links to this article: <a href="https://www.autismspeaks.org/science/science-news/no-mmr-autism-link-large-study-vaccinated-vs-unvaccinated-kids">https://www.autismspeaks.org/science/science-news/no-mmr-autism-link-large-study-vaccinated-vs-unvaccinated-kids</a><br />
And this video:<br />
<a href="http://jamanetwork.com/learning/video-player/10234769">http://jamanetwork.com/learning/video-player/10234769</a><br />
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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." <br />
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To further ensure this fact, here's what he told a reporter after his meeting with Trump.<br />
<br />
"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." <br />
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So again - his issue seems to be with the integrity of the CDC specifically.<br />
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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). <br />
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And finally, no. I wasn't born yesterday. I don't think we ought to blindly trust the information available to us....goodness no. <br />
<br />
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."<br />
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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. <br />
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"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."<br />
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<a href="http://keepersprings.com/about/our-founders/">http://keepersprings.com/about/our-founders/</a><br />
<br />
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)<br />
https://www.cdc.gov/vaccines/hcp/patient-ed/conversations/downloads/vacsafe-thimerosal-color-office.pdf<br />
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Lastly the news articles I quoted above: <br />
<a href="https://rewire.news/article/2017/01/09/trump-says-facts-facts-anti-science-agenda-begs-differ/">https://rewire.news/article/2017/01/09/trump-says-facts-facts-anti-science-agenda-begs-differ/</a><br />
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<a href="https://www.google.com/amp/s/thinkprogress.org/amp/p/fa21f259a2a9?client=safari">https://www.google.com/amp/s/thinkprogress.org/amp/p/fa21f259a2a9?client=safari</a><br />
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<a href="https://www.google.com/amp/mobile.nytimes.com/2017/01/10/us/politics/anti-vaccine-activist-trump-immunizations.amp.html#pt0-574581">https://www.google.com/amp/mobile.nytimes.com/2017/01/10/us/politics/anti-vaccine-activist-trump-immunizations.amp.html#pt0-574581</a><br />
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<a href="http://www.sciencemag.org/news/2017/01/exclusive-qa-robert-f-kennedy-jr-meeting-trump-proposed-vaccine-commission">http://www.sciencemag.org/news/2017/01/exclusive-qa-robert-f-kennedy-jr-meeting-trump-proposed-vaccine-commission</a><br />
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Not quoted here, but read in November and in my head as I read today's headlines: <a href="https://www.statnews.com/2016/11/09/donald-trump-win-science-medicine/">https://www.statnews.com/2016/11/09/donald-trump-win-science-medicine/</a><br />
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<br />Laurahttp://www.blogger.com/profile/00920522444099892494noreply@blogger.com0tag:blogger.com,1999:blog-306107524532533616.post-1520396624322306382016-04-17T00:05:00.003-04:002016-04-17T00:05:56.326-04:00A Saddend Heart<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">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...<br /><br />"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."</span></span><br />
<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;"> </span></span><span style="font-size: x-small;"><span style="font-family: "Trebuchet MS",sans-serif;">-Edwin H Chapin</span></span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">Today I write as I mourn two losses here, in our little CHD world.</span></span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">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. <br /><br />(These words here are not what I want on this blog. I don't want to keep typing.)<br /><br />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).</span></span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">On the following Monday, a precious 2 and a half month old baby boy, Andre Showalter, a HLHS CHD Warrior suddenly passed away. <br /><br />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. </span></span><br />
<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;"><br />In both cases, nothing indicated any issue - both children were doing so well...</span></span><br />
<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;"></span></span><br />
<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;"></span></span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">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..."</span></span><br />
<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;"><br />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.<br /><br />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?<br /><br />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.<br /></span></span>Laurahttp://www.blogger.com/profile/00920522444099892494noreply@blogger.com1tag:blogger.com,1999:blog-306107524532533616.post-2721569189993258882015-01-12T21:50:00.001-05:002015-01-12T21:50:03.724-05:00An Article Worth Sharing<div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);">This : </span><a href="http://mobile.nytimes.com/blogs/opinionator/2015/01/10/getting-grief-right/?referrer=" style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">http://mobile.nytimes.com/blogs/opinionator/2015/01/10/getting-grief-right/?referrer=</a></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);">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!</span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);">"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.</span></div><span style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress; background-color: rgba(255, 255, 255, 0);"><div><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div>.. To do so [achieve closure] would be to lose a piece of a sacred bond.</span><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);">I often tell them that the size of their grief corresponds to the depth of their love....</span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);"> Sadness, regret, confusion, yearning and all the experiences of grief become part of the narrative of love for the one who died."</span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);">Yes. </span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);">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.</span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">So so so has been in my head that I want to write about grief...but there just isn't time...</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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... </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">And always I know and remind myself -- it's because of love.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div>Laurahttp://www.blogger.com/profile/00920522444099892494noreply@blogger.com0tag:blogger.com,1999:blog-306107524532533616.post-30501186784467393362013-12-04T22:55:00.002-05:002013-12-04T22:57:55.256-05:00A 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."<br />
<br />
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:<br />
<br />
<a href="http://www.ngrguardiannews.com/index.php/features/natural-health/140181-environmental-toxins-linked-to-heart-defects">Environmental Toxins Linked to Heart Defects (One Study in Canada) </a><br />
"<b><i>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</i></b>, 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. <br />
<br />
" '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.<br />
<br />
The study is based on congenital heart defects diagnosed in
2004-11 and chemical emissions recorded by a Canadian agency tracking
pollutants."<br />
<br />
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.” <br />
-- End of my pull-quotes -- <br />
<br />
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.)<br />
<br />
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.<br />
<br />
<br />Laurahttp://www.blogger.com/profile/00920522444099892494noreply@blogger.com0tag:blogger.com,1999:blog-306107524532533616.post-50703433541470978612013-05-14T15:22:00.000-04:002013-05-14T16:47:02.538-04:00 A Story to Share as we Remember Gwen & Marie<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtPJg7c7jXKVQ_j91-H7OiJAPQxBK-IU-PIqNSUG8SRbu9_S4KuJ2Q791sRdVdst6CCdSQJKD8valBd0CdfU3LpyUQU0p4p5qw3GycqvntSXP29Y6vRl94ML4rIjMNCDBrem4Q9yF2f210/s1600/best+carpenter+family+photo.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="314" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtPJg7c7jXKVQ_j91-H7OiJAPQxBK-IU-PIqNSUG8SRbu9_S4KuJ2Q791sRdVdst6CCdSQJKD8valBd0CdfU3LpyUQU0p4p5qw3GycqvntSXP29Y6vRl94ML4rIjMNCDBrem4Q9yF2f210/s320/best+carpenter+family+photo.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lillian, Marie and Me with Gwen around 27 weeks.</td></tr>
</tbody></table>
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. <br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpwEaqj6Wa9hlv0K-IIRmGwA3LLbrYrPn47c4rgJedbb9QeAz6-4QBJVPHHYX_5UuGctLCwT3ERyZzSJAEL-tvysysR4Wzr5E2uyo-xnC8QxNo01Me9Y-Fj0CYE8tbxvT97mwkUNkIyKek/s1600/FH000015.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpwEaqj6Wa9hlv0K-IIRmGwA3LLbrYrPn47c4rgJedbb9QeAz6-4QBJVPHHYX_5UuGctLCwT3ERyZzSJAEL-tvysysR4Wzr5E2uyo-xnC8QxNo01Me9Y-Fj0CYE8tbxvT97mwkUNkIyKek/s320/FH000015.JPG" width="257" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">An over-the shoulder shot taken by Grammy (my mom) </td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgs9EAwIi2t-3g0M3T2-xZGudkG2wrEUJ5RgktoHXK-jtk6tPcZ8eVCWnI0PH4IFwjjwOS2MI6FATGgwdPN6XTORDTM5RErdFexYEpXVPsDoeR7lq1FAB-_rduJtLmPY1qEbl22sMxufH4e/s1600/FH000007.JPG" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgs9EAwIi2t-3g0M3T2-xZGudkG2wrEUJ5RgktoHXK-jtk6tPcZ8eVCWnI0PH4IFwjjwOS2MI6FATGgwdPN6XTORDTM5RErdFexYEpXVPsDoeR7lq1FAB-_rduJtLmPY1qEbl22sMxufH4e/s320/FH000007.JPG" width="266" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Snuggled near me in the baby sling.</td></tr>
</tbody></table>
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. <br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjosnHcIWKWY1WttBuPlZtobdBRZIKNIhWxjfxTGQQObtKz_2babYfGj6vgoe46zlATYjVeaM0iVIQbu5LZVTZTHtFW5nwOKIXutLun93KAMG7Tr7GF0AZ_5vjSFeHsoQPjnJhb7y0uUVmJ/s1600/100_1652.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjosnHcIWKWY1WttBuPlZtobdBRZIKNIhWxjfxTGQQObtKz_2babYfGj6vgoe46zlATYjVeaM0iVIQbu5LZVTZTHtFW5nwOKIXutLun93KAMG7Tr7GF0AZ_5vjSFeHsoQPjnJhb7y0uUVmJ/s320/100_1652.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Myers napping with his little Gwen</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjKBEPsrxfuP6gmtBGT-_nHQQ-RpFdaxuZNUFYRrlH2wm4BWg-HP_CA13RBxp0Lafht4n6gqkVmkwEqRPCB5F1OSc27XIM2Zv2v1p_15L-8InUAyE4QZy_Ib_wHZOcWuFosk37HewKw-2r/s1600/DSCN2787.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjKBEPsrxfuP6gmtBGT-_nHQQ-RpFdaxuZNUFYRrlH2wm4BWg-HP_CA13RBxp0Lafht4n6gqkVmkwEqRPCB5F1OSc27XIM2Zv2v1p_15L-8InUAyE4QZy_Ib_wHZOcWuFosk37HewKw-2r/s320/DSCN2787.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Myers and Marie at Shenandoah National Park</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjn13w2jDs2RXPg3kFeyqbBrFz8wwh9kvi2x6WRWo8bnkq2gfFWx9yTqw_IGl2YQnVU-s16bd1K-u1RDwS2cIreNm4C6ZhHnF8sawjYvZ9dA_mv5z0zqmNP7m372vN3MPsAozASRR9px68U/s1600/DSCN2716.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjn13w2jDs2RXPg3kFeyqbBrFz8wwh9kvi2x6WRWo8bnkq2gfFWx9yTqw_IGl2YQnVU-s16bd1K-u1RDwS2cIreNm4C6ZhHnF8sawjYvZ9dA_mv5z0zqmNP7m372vN3MPsAozASRR9px68U/s320/DSCN2716.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">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.</td></tr>
</tbody></table>
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:<br />
<br />
"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.<br />
<br />
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! :)"<br />
<br />
<a href="http://helpbringwilsonhome.com/all-about-wilson/">http://helpbringwilsonhome.com/all-about-wilson/</a><br />
....<br />
<br />
"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.<br />
<br />
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.<br />
<br />
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."<br />
<br />
<a href="http://helpbringwilsonhome.com/the-stirring-in-my-heart/#more-85">http://helpbringwilsonhome.com/the-stirring-in-my-heart/#more-85 </a><br />
<br />
---<br />
<br />
"<span style="line-height: 13px;">$10 from 2500 people adds up and will keep Wilson from aging out of his orphanage and being sent to a mental institution!"</span><br />
<br />
<a href="http://helpbringwilsonhome.com/yes-i-want-to-help/"><span style="line-height: 13px;">http://helpbringwilsonhome.com/yes-i-want-to-help/</span></a><br />
<br />
---<br />
<br />
Finally let me just say this also, for today - *Thank you* for surrounding us with love today: <br />
<br />
"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...<br />
<br />
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.<br />
<br />
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! <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEig5UFPUdV0wbeAP0y4IGWCef0iL5tMZDC_5SJ2uLlgnKeQtVUIWYuGqFt75dbN0pR-KFfYVjgrrPNg9JQDxGVuK65fwDy9MFKok_KU6IoocvqJTr89VNj8nDY_qlryMRA-br3oecmjO0iG/s1600/100_1773.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEig5UFPUdV0wbeAP0y4IGWCef0iL5tMZDC_5SJ2uLlgnKeQtVUIWYuGqFt75dbN0pR-KFfYVjgrrPNg9JQDxGVuK65fwDy9MFKok_KU6IoocvqJTr89VNj8nDY_qlryMRA-br3oecmjO0iG/s320/100_1773.JPG" width="279" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sleepy in her carseat</td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjt_1hh2oTkZQr_zBLvTd3IcKeo8DlAmK_cqQ2TV9mKS_fApcGUkhYR7_8u5ROGFms1Yv4RL6ZKR4LJvH9GdlnPDi9ibryid7x0mgyHvcxrN3lVF9ETTspQTiTFVTS60ZdVzs30faDT4GcY/s1600/FH000009.JPG" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjt_1hh2oTkZQr_zBLvTd3IcKeo8DlAmK_cqQ2TV9mKS_fApcGUkhYR7_8u5ROGFms1Yv4RL6ZKR4LJvH9GdlnPDi9ibryid7x0mgyHvcxrN3lVF9ETTspQTiTFVTS60ZdVzs30faDT4GcY/s320/FH000009.JPG" width="319" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Stretching in her sleep</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_Irz3gNvple02pijAGmD4gjy1WXV-Y9ijv8xz65DpAmVcosyAkvuglhwHw5j5_5VkgvXhe9e0xTsmQq1i6c1S1H4dxWMkustcZ7MbKiZ5D4aoSr3CY-LmC6b7lxnM-ddwBFkJzU0NeDL8/s1600/img_0924.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_Irz3gNvple02pijAGmD4gjy1WXV-Y9ijv8xz65DpAmVcosyAkvuglhwHw5j5_5VkgvXhe9e0xTsmQq1i6c1S1H4dxWMkustcZ7MbKiZ5D4aoSr3CY-LmC6b7lxnM-ddwBFkJzU0NeDL8/s320/img_0924.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Carpenter Girls </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7G3VK1WiAJiJY6lVeRgZENMHhYWWafXDXzdJIKlmanmSt4zycFX4EnOR3gzGen74F71khu5pjaZm3JqywXVEF4Q1aJaj0fGExNCfnZi_t91UnuyBXGtEAzAJBprnZen2ZY6k_jKqbckbq/s1600/100_5156.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7G3VK1WiAJiJY6lVeRgZENMHhYWWafXDXzdJIKlmanmSt4zycFX4EnOR3gzGen74F71khu5pjaZm3JqywXVEF4Q1aJaj0fGExNCfnZi_t91UnuyBXGtEAzAJBprnZen2ZY6k_jKqbckbq/s320/100_5156.JPG" width="275" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Fun. Marie and the word "fun" go together. Her laugh - I can still hear it. </td></tr>
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<br />Laurahttp://www.blogger.com/profile/00920522444099892494noreply@blogger.com1tag:blogger.com,1999:blog-306107524532533616.post-90368515974136182952013-03-23T23:40:00.000-04:002013-03-24T00:17:22.418-04:00A CHD Story to Share in honor of Gwen's 3rd Birthday<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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). </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpo2TiSK8XYuiXNC_oEXk0PzQ_fyJcgzvDyE5COMf3bsOuVZdpMCR9quoFCT9Z5S2iCMCA9HAscXmGAKuv5fMxqVOdCWipp9pO7LjxIkvivVbn8CvORkxjqW21Zn-cEenJo-OTFQxN7x8H/s1600/2010-04-09.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="207" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpo2TiSK8XYuiXNC_oEXk0PzQ_fyJcgzvDyE5COMf3bsOuVZdpMCR9quoFCT9Z5S2iCMCA9HAscXmGAKuv5fMxqVOdCWipp9pO7LjxIkvivVbn8CvORkxjqW21Zn-cEenJo-OTFQxN7x8H/s400/2010-04-09.JPG" width="400" /></a></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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.</span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: italic; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> </span></h3>
<h3 dir="ltr" style="margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: italic; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">“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 </span></h3>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 19px; font-style: normal; font-variant: normal; font-weight: bold; text-decoration: none; vertical-align: baseline;"> </span></h3>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 19px; font-style: normal; font-variant: normal; font-weight: bold; text-decoration: none; vertical-align: baseline;">Shopping With Cam </span></h3>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">By: Evelyn Fawcett </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Written Apr 24, 2012 </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">http://www.caringbridge.org/visit/camfawcett </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPjX5DSPWgLD6eV0NeQ-ik5BL6XeQ7lcPME7dWux88_XGVrWUtg9V9QW9GPz-lKwqK_I5CW8TxPE5eT0Kx4BKx5F1odfIjGIhW4nFsncPL0eIYLGORZAfHfOqVCv6Gt23yA2ue_50Qahl8/s1600/CAM1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="" border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPjX5DSPWgLD6eV0NeQ-ik5BL6XeQ7lcPME7dWux88_XGVrWUtg9V9QW9GPz-lKwqK_I5CW8TxPE5eT0Kx4BKx5F1odfIjGIhW4nFsncPL0eIYLGORZAfHfOqVCv6Gt23yA2ue_50Qahl8/s320/CAM1.jpg" title="" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cam and his mom </td></tr>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Cam's Xray results came back clear yesterday. So we can scratch infections from the list!</span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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 </span><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: underline; vertical-align: baseline;">not </span><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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.</span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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.</span></div>
<br />
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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.</span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> </span></div>
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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.</span></div>
<br />
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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:-).</span></div>
<br />
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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.</span></div>
<br />
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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.</span></div>
<br />
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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.</span></div>
<br />
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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! </span></div>
<br />
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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. </span></div>
<br />
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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.</span></div>
<br />
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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!</span></div>
<br />
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">p.s.</span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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: </span></div>
<br />
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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."</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEif0OyOYJA64EcbVp_jKEfmw8TLh4JMkto_YwgjbrZSRnXnsCuoPGPJGzhi8PfqrZv8R5qFGpt4X5LT0fAMelhJIrm99xGNXeZ-Bl4v_7nhvA4A85cittAXNH4H10eVSZd-sTgeH1Te1IT_/s1600/Maggie+and+Cam.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEif0OyOYJA64EcbVp_jKEfmw8TLh4JMkto_YwgjbrZSRnXnsCuoPGPJGzhi8PfqrZv8R5qFGpt4X5LT0fAMelhJIrm99xGNXeZ-Bl4v_7nhvA4A85cittAXNH4H10eVSZd-sTgeH1Te1IT_/s320/Maggie+and+Cam.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Big sister Maggie and Cam</td></tr>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Laura here again...</span></div>
<br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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 </span><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: italic; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">and</span><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> 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.).</span></div>
<br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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!</span></div>
<br />
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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. </span></div>
<br />
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">The
formation of the heart, the process by which it grows into a
four-chambered pumping machine is <i>amazing</i> to me - jaw-droppingly amazing -
and that it </span><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: italic; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">ever</span><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> forms correctly... ?!?!</span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMm7A_8YvvnY9_QT_YcwDAvSU0jTS3umxo8GRG5KJG8LSv-GjG8qA2IjVQaWBVpE4LSTUWBqyiFBt7kk-TZKFsKr7eOdevwV15h85RqNzzHSGOMRESoHK2rQZyciQKLdEwXTTE9c9eSB1b/s1600/100_1660.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><br /></a></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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! </span><br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMm7A_8YvvnY9_QT_YcwDAvSU0jTS3umxo8GRG5KJG8LSv-GjG8qA2IjVQaWBVpE4LSTUWBqyiFBt7kk-TZKFsKr7eOdevwV15h85RqNzzHSGOMRESoHK2rQZyciQKLdEwXTTE9c9eSB1b/s1600/100_1660.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="288" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMm7A_8YvvnY9_QT_YcwDAvSU0jTS3umxo8GRG5KJG8LSv-GjG8qA2IjVQaWBVpE4LSTUWBqyiFBt7kk-TZKFsKr7eOdevwV15h85RqNzzHSGOMRESoHK2rQZyciQKLdEwXTTE9c9eSB1b/s320/100_1660.JPG" width="320" /></a><br />
<br />
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">HAPPY 3rd BIRTHDAY GWENYTH!</span><br />
<br />
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">every day.</span><br />
<br />
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">miss you... every day. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-306107524532533616.post-44259817058779724082012-09-15T10:08:00.000-04:002012-09-15T10:09:45.625-04:00"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.<br />
<b><br /></b>
<b>"Our Selves, Other Cells"</b><br />
<b><br /></b>
"Is it any solace to sentimental mothers that their babies will always be part of them?<br />
<br />
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. <br />
<br />
Here’s what happens. <span id="more-136905"></span><br />
<br />
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. <br />
<br />
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.<br />
<br />
....<br />
<br />
<br />
How many people have left their DNA in us? <i><b>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.</b></i> <i><b>If we have an older sibling, that
older sibling’s cells may be in us. </b></i> 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...<br />
<br />
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."<br />
<br />
<a href="http://boingboing.net/2012/01/03/cells.html" target="_blank">-Full article here-</a><br />
<br />
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.<br />
<br />
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 <i>we</i> can to that end while existing in our tiny moment here. <br />
<br />
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...).<br />
<br />
Some favorite lyrics of mine read:<br />
<br />
"<span style="font-family: verdana; font-size: 13px;">The heart can see beyond the sun</span><br />
<div align="left" id="songlyrics" style="font-family: verdana; font-size: 13px; width: 393px;">
Beyond the turning moon<br />
And as we look the heart will teach us<br />
All we need to learn<br />
<span class="b-lyrics-from-signature" style="color: white; font-size: 0.8em; line-height: 1.5em;">www.lyricsmode.com/lyrics/j/judy_collins/trust_your_heart.html ]</span><br />
We have dreams, we hold them to the light like diamonds<br />
Stones of the moon and splinters of the sun<br />
Some we keep to light the dark nights on our journey<br />
And shine beyond the days when we have won<br />
<br />
The heart can see beyond our prayers<br />
Beyond our fondest schemes<br />
And tell us which are made for fools<br />
And which are wise men's dreams<br />
<br />
Trust your heart"</div>
<div align="left" id="songlyrics" style="font-family: verdana; font-size: 13px; width: 393px;">
<br /></div>
<div align="left" id="songlyrics" style="font-family: verdana; font-size: 13px; width: 393px;">
<span style="font-family: Times; font-size: small;">It is </span><span style="font-family: Times; font-size: small;">beautiful</span><span style="font-family: Times; font-size: small;"> to think, that </span><i style="font-family: Times; font-size: medium;">beyond our prayers, the heart can see</i><span style="font-family: Times; font-size: small;">... and I'm am Trusting in something science will never touch. But to live, we </span><i style="font-family: Times; font-size: medium;">need</i><span style="font-family: Times; font-size: small;"> beauty, not just science - and I find beauty - beauty even and </span><i style="font-family: Times; font-size: medium;">especially</i><span style="font-family: Times; font-size: small;"> 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." </span></div>
<div align="left" id="songlyrics" style="font-family: verdana; font-size: 13px; width: 393px;">
<span style="font-family: Times; font-size: small;"><br /></span></div>
<div align="left" id="songlyrics" style="width: 393px;">
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. </div>
<div align="left" id="songlyrics" style="font-family: verdana; font-size: 13px; width: 393px;">
<br /></div>
<div align="left" id="songlyrics" style="font-family: verdana; font-size: 13px; width: 393px;">
<br /></div>
<br style="font-family: Arial; font-size: 13px;" />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-306107524532533616.post-15150964604574938332012-09-09T01:15:00.000-04:002012-09-10T10:41:56.607-04:00Protecting 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.<br />
-----------------------------------------------------------<br />
<br />
Words.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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"<br />
<br />
She writes:<br />
<br />
"<i>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,' </i>"<br />
<br />
<br />
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....<br />
<br />
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.<br />
<br />
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.<br />
<br />
I still feel gutted when I remember all this...<br />
<br />
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;<br />
<br />
<i>"This was never supposed to happen to her"</i><br />
<br />
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.<br />
<br />
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:<br />
<br />
<i>"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."</i><br />
<br />
and...<br />
<br />
<i>"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."</i><br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
"<i>Time passes.</i><br />
<i><br /></i>
<i>Could it be that I never believed it?...</i><br />
<i><br /></i>
<i> 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....</i><br />
<i><br /></i>
<i>When we talk about mortality we are talking about our children.</i><br />
<i><br /></i>
<i>...what does it mean?</i><br />
<i><br /></i>
<i>...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?</i><br />
<i><br /></i>
<i><b> Are we talking about the enigma of pledging ourselves to protect the unprotectable. About the whole puzzle of being a parent?</b>"</i><br />
<i><br /></i>
- J.Didion<br />
<br />
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.<br />
<br />
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...<br />
<br />
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.<br />
<br />
<br />
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.<br />
<br />
I am doing okay.<br />
<br />
(The baby-loss mama whose blog I found tonight).<br />
http://iseewhatyoumeme.blogspot.com/2012/04/dear-charlotte.html<br />
<div>
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<br />Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-306107524532533616.post-76026770728633144302012-03-17T11:17:00.004-04:002018-03-18T14:50:19.739-04:00Happy 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.<br />
<br />
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.<br />
<br />
I <i>miss</i> 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.<br />
<br />
I wish things were different - it will never make sense to me how <i>this</i> 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. <br />
<br />
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.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhc5jJQCjgOeTTgxSxHoT226GrfrwqrP7iSMaEfIcfkB9xumxJC66ZRJqLaKMtrOD2XZQqLlXzrVwUb0ChJ_w-LUxzBfn04HsxCQFqb0ZXno5g7ke1J5R-o6P7rIgK3i0RN2dlw-0iipqaG/s1600/2010-05-12.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhc5jJQCjgOeTTgxSxHoT226GrfrwqrP7iSMaEfIcfkB9xumxJC66ZRJqLaKMtrOD2XZQqLlXzrVwUb0ChJ_w-LUxzBfn04HsxCQFqb0ZXno5g7ke1J5R-o6P7rIgK3i0RN2dlw-0iipqaG/s400/2010-05-12.jpg" width="400" /></a> <br />
<br />
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.<br />
<br />
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.<br />
<br />
As on think on this, I want everyone to know about PCHA and even <a href="http://www.sisters-by-heart.org/p/testimonials.html" target="_blank">Sister's By Heart</a> 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<a href="http://sadierosefoundation.org/" target="_blank"> Sadie Rose foundation</a> 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.<br />
<br />
I wrote this last year, <a href="http://www.gwenythcarpenter.com/p/gifts-of-gratitude.html" target="_blank">Gifts of Gratitude</a> 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. <br />
<br />
Finally, today I feel compelled share something by way of speaking of rainbows and miracles...<br />
<br />
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. <br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi982v4GO2Xie0CkxuwP1wtGDywCkf71yJlJoTQp1YoWc42Txh5u9HxIvg69LFq_9BLXz_iRww-cfqW_Q3vdNsKIbttcG5CUczAGE_S85Wc1RMNKtF5ivunORdF_e3w1POkrm01G-DykCwm/s1600/IMG_4985.JPG" style="margin-left: auto; margin-right: auto;"><img border="0" height="385" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi982v4GO2Xie0CkxuwP1wtGDywCkf71yJlJoTQp1YoWc42Txh5u9HxIvg69LFq_9BLXz_iRww-cfqW_Q3vdNsKIbttcG5CUczAGE_S85Wc1RMNKtF5ivunORdF_e3w1POkrm01G-DykCwm/s400/IMG_4985.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The rainbow in my backyard on May 15th, 2010 with the quote I love.</td></tr>
</tbody></table>
<br />
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.") <br />
<br />
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.<br />
<br />
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.<br />
<br />
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):<br />
<br />
"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."<br />
<br />
----<br />
<br />
Happy Birthday Gwenyth! We love you! <br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5ME6mWwih5mUi3NBZVk-BAohes9_i3UlVfSMd5Pzwd5E_-MqQa3ArrwzNczSplA1MerIt_H6HCDglL-8n8ys74NzeQ1oPMxcxEcIEIL6N9PV7ZjTFojrT3kOEQ2JXvcRb9Zwc6TjKXiB3/s1600/100_1269.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5ME6mWwih5mUi3NBZVk-BAohes9_i3UlVfSMd5Pzwd5E_-MqQa3ArrwzNczSplA1MerIt_H6HCDglL-8n8ys74NzeQ1oPMxcxEcIEIL6N9PV7ZjTFojrT3kOEQ2JXvcRb9Zwc6TjKXiB3/s320/100_1269.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Gwen with us soon after she was born.</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeDf_L2jVwK5UzZPXcrSFQyTCZYI_lmWCCQVeotiJxt843yQ7cmf39lqGQNTcqlcetxiPLk_K8xzr2xTZYRF9MKHhAaFVQK_LVUiq4lt5kWJj8iAnrsmiDe1j1xclkWtDhJsxhETuxOXX2/s1600/100_1370.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeDf_L2jVwK5UzZPXcrSFQyTCZYI_lmWCCQVeotiJxt843yQ7cmf39lqGQNTcqlcetxiPLk_K8xzr2xTZYRF9MKHhAaFVQK_LVUiq4lt5kWJj8iAnrsmiDe1j1xclkWtDhJsxhETuxOXX2/s320/100_1370.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Just before her open-heart surgery on the morning of March 19th, 2010.</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfA5kwHnefLo6jnUdU39zEFQAVy5pxjahV67A6OH7ZTp09vJPDGMtAxyp4uTWsC1eJGP5wo1mgu-9RmI_kUVfwLSoChTtreBMQz1nuNPI4a2rv0PDNkuZB4m95DJJDBPn6zwPrg5ZsK16W/s1600/IMG_9218.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfA5kwHnefLo6jnUdU39zEFQAVy5pxjahV67A6OH7ZTp09vJPDGMtAxyp4uTWsC1eJGP5wo1mgu-9RmI_kUVfwLSoChTtreBMQz1nuNPI4a2rv0PDNkuZB4m95DJJDBPn6zwPrg5ZsK16W/s320/IMG_9218.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Her sweet self, taken at our Philly Apartment soon after she was discharged (great capture Aunt Becca!)</td></tr>
</tbody></table>
Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-306107524532533616.post-24756130777674446242012-02-10T11:01:00.005-05:002018-03-18T14:48:37.733-04:00Please join me in Caring for little hearts during American Heart Month<b>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.</b><br />
<b> </b> <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFc84wKnV_j7-uRBmMk2_IrT2o8mT_AEBtTwzEuVdptyCCmRoOsZEcDMTAUPCKumLXg4H-VN5YgYjaJjwbGQhUYt3eastTuJ44fwn8FKEeq-Fo59r-fEWd5w0gcYGAWLMkWMa8Rl4yf57n/s1600/IMG_3055.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="294" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFc84wKnV_j7-uRBmMk2_IrT2o8mT_AEBtTwzEuVdptyCCmRoOsZEcDMTAUPCKumLXg4H-VN5YgYjaJjwbGQhUYt3eastTuJ44fwn8FKEeq-Fo59r-fEWd5w0gcYGAWLMkWMa8Rl4yf57n/s320/IMG_3055.JPG" width="320" /></a>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 <a href="http://www.caringbridge.org/visit/camfawcett/journal">Thomas Campbell Fawcett.</a> Diagnosed prenatally with Hypoplastic Left Heart Syndrome, he was born June 10, 2011.<br />
<br />
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. <br />
<br />
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 <a href="http://www.sisters-by-heart.org/p/care-packages.html">Sisters By Heart</a>, in honor of Cam. <br />
<br />
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(Thank you everyone, for your care, time, and generosity!)</div>
<br />
The reason I'm writing is to <b>share the news that the event continues</b>...<b>and it is open to everyone!</b> Please consider joining us in supporting "heart babies" and their families.<br />
<br />
<br />
<div style="text-align: center;">
<span style="font-size: large;"><b>~Caring for Little Hearts During American Heart Month~</b></span></div>
<br />
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<span class="text_exposed_show"> <b><br />
</b></span><span class="text_exposed_show"><b> </b></span><span class="text_exposed_show"><b> <span style="font-size: large;">How to Participate: </span> </b></span><br />
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 organization. Follow the links below to learn what special items you can provide. <br />
<br />
You can donate $5, $10 or $25 to: <br />
<span class="text_exposed_show"> <br />
<b>Sisters By Heart</b>:<br />
<a href="http://www.sisters-by-heart.org/p/care-packages.html" rel="nofollow nofollow" target="_blank">http://<wbr></wbr><span class="word_break"></span>www.sisters-by-heart.org/p/<wbr></wbr><span class="word_break"></span>care-packages.html</a><br />
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."<br /></span><br />
<span class="text_exposed_show"> <br />
</span><br />
<div class="text_exposed_root text_exposed" id="id_4f34b6fdf0ddf3229170578">
<b>ABOUT CHDs:</b></div>
<div class="text_exposed_root text_exposed" id="id_4f34b6fdf0ddf3229170578">
<span class="text_exposed_show">A congenital heart defect (CHD) is a structural problem of the heart<br />
that occurs in the first seven weeks following conception.<br />
<br />
CHDs are the most common type of birth defect, affecting 1 in 125 babies born, according to the March of Dimes.<br />
<br />
To date, doctors don't know the cause of the majority of congenital heart defects<br />
</span></div>
<span class="text_exposed_show"><a href="http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/cardiac/chd.html">Learn more: Overview with Illustrations</a></span><br />
<div class="text_exposed_root text_exposed" id="id_4f34b6fdf0ddf3229170578">
<span class="text_exposed_show"> <br />
<b>Feature Story of a day in the life of a Pediatric Heart Surgeon</b>: <a href="http://www.gwenythcarpenter.com/2011/02/chd-awareness-must-read-miracle-is-his.html" rel="nofollow nofollow" target="_blank">http://<wbr></wbr>www.gwenythcarpenter.com/<wbr></wbr>2011/02/<wbr></wbr>chd-awareness-must-read-mir<wbr></wbr>acle-is-his.html</a><br /></span><br />
<br />
<br />
<b><span style="font-size: large;">P</span></b>lease, take a moment to read about the children our gathering represented. Consider participating and supporting two wonderful organizations, Sisters By Heart. Please spread the word and share this event and help care for little hearts during American Heart Month.<br />
<span class="text_exposed_show"> <span style="font-size: large;"><i><br />
Thank you for participating in CHD Awareness Week!</i></span></span><br />
----<br />
<br />
One last item: I'd like to thank everyone who participated in the "lia sophia" fundraiser. 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 and in memory of Gwen. Thank you Jessie and Erin for organizing and for your generous donations!<br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-306107524532533616.post-78156660377337781502012-02-10T10:34:00.001-05:002018-03-18T15:07:35.002-04:00CHD Awareness: Intertwined Stories here in Harrisonburg - One Small Picture of the WholeI remember one day, a friend Kristin was telling me about her newborn nephews’ heart. He was born with all kinds of things wrong. She explained details about his surgery that went so far over my head. I recall thinking,”that doesn’t sound good, how can they help the poor child, no doctor could possibly do anything lasting.” I assumed it was so rare to be born with a serious heart deformity and that the doctors must have been on completely uncharted grounds. I imagined them hoping and puzzling their way through as they tried to keep him alive. I prayed for him and hoped God would spare him... but honestly, I was fearful that it was so beyond the talents and gifts God lent to us in this day and age... <br />
<br />
It was March, 2006 when <a href="http://www.caringbridge.org/visit/jonathanzampier/journal">Jonathan</a>, Kristin's nephew, was born. He was my introduction to the world of CHD. Hindsight would construct a “pivotal moment" there but, at the time I remained clueless, never hearing or perhaps never registering the term "Congenital Heart Defect." <br />
<br />
One uber-healthy child later, in November 2009 I would go to a 20 week ultrasound excited to find out if our next child was a boy or a girl. The words “something wrong with her heart, something is not right with the size and location of some of her vessels...” stand out from that days’ memory. Blindsided and whacked into another realm - there we were in <a href="http://www.facebook.com/note.php?note_id=443969982666" target="_blank">CHD land</a>. <br />
<br />
As I stumbled around the Internet, hoping to scrap together some sense of my new reality, I found and connected with a local heart family group. They put me in touch with a member, Becca, who lived nearby, who’s son, <a href="http://winchester.mendedlittlehearts.net/?p=57">Gabe</a>, had the same diagnosis as my baby. He was 8 years old and doing well. <br />
<br />
To be able to look another mother in the eye who knows the terms you now live and breath - I’m sure you can guess - it lit so many dark corners and grounded my feet a little. Hope started to be real. <br />
Several hours for many days on the Internet taught me that CHD’s are <b><i>not</i></b> rare, unheard-of, problems that give doctors cause to shrug and shake their heads. I quickly learned that many, many babies start their life in need of complex surgery. Connecting with people such as Gabe's mom, in the CHD world became my goal. Online I met other expecting moms on a similar path and found that to be an essential form of support.<br />
<br />
I contacted Jonathan's parents, the only other people I had ever heard of before that faced anything remotely similar. They helped me navigate. They answered my questions, and offered continual advice and support. All of the sudden their story “made sense” to me. Their story was now my Hope. How funny it is, looking back. From clueless to leaning on.<br />
<br />
Gwenyth, my daughter, survived to birth. Her surgery went well. Reverence, a deep reverence is the best way I can describe the feeling when I would see her surgeon around the hospital (<a href="http://www.gwenythcarpenter.com/2011/02/chd-awareness-must-read-miracle-is-his.html">my favorite feature story about heart surgeons is here</a>). We brought her home when she was one month old, everything had gone well. At two months old, out of the blue, she got sick and died suddenly. According to the doctors, they can only guess it was a virus. Her death is considered unrelated to her beautifully-repaired heart. She would need more surgeries as she grew - it was not going to be a simple road, but we were well on our way. And then we weren't. <br />
<br />
"<i>Medicine, I have had reason since to notice more than once, remains and imperfect art.</i>" - J. Didion<br />
<br />
Almost one year after we lost Gwen, a friend, Heather approached me after our church service. She told me, that her nephew <a href="http://www.caringbridge.org/visit/camfawcett">Thomas Campbell</a>, down in North Carolina just got diagnosed with Hypoplastic Left Heart Syndrome (HLHS) in-utero. My first thought was “oh no! I wish you didn’t know me! I’m not representative of what has to happen.” I felt the word HOPE from my mouth would sound ridiculous. My other, first-thought was, "oh, no! Not another baby, and really, twice in this tiny-little church?" You want to believe if you take a hit, then everyone you know is “safe” - somehow you want to believe the least you can do is protect other people from this kind of nightmare. Superstition; you know it’s baseless yet it gives you something to pretend to steer with. <br />
<br />
Thankfully I could offer something other than words touting hope, which again, coming from me felt less believable. I nominated her sister to receive a "<a href="http://www.sisters-by-heart.org/p/care-packages.html">Sister’s By Heart care package</a>". This is a care package specifically for babies newly diagnosed with HLHS created by a recently formed organization called “Sisters By Heart.” Each item is placed with a friendly and informative note explaining why its included. A care package like this helps the mother become familiarized and perhaps even a tiny bit more comfortable with the reality of open-heart surgery on a newborn. It is a care package I wish I could have received.<br />
<br />
Several months down the line Heather and I learned unbeknownst to each other, of another local CHD Warrior and his family. I read about the family in the newspaper. It was a feature story about the March of Dimes up-coming walk. Heather on the other-hand, met the family through her husband, his building company having built their house. It was a family that recently moved to Harrisonburg from Tennessee. Christie and her husband was blessed with twins in 2007, Lauren and <a href="http://www.caringbridge.org/visit/christiehuggins/mystory">Blake</a>. Blake is an HLHS "CHD Warrior" and has recovered from more than five surgeries. In May, 2010 Christie sadly lost a baby boy, Tristan to HLHS. He was born at 25 weeks. This week, at a special CHD gathering by my fellow church ladies, Christie was able to join us and share a little about her journey in CHD land.<br />
<br />
Heather and I talked about how strange it is to go from never hearing about something to hearing about CHD so close to home and all in a short period of time. It is in once sense, helpful - feeling isolated is never a good thing. However, you also don’t want to believe it is so common.<br />
<br />
In the last year I also learned about another sweet baby girl, diagnosed in-utero with HLHS. Her mother is commutes and hour here to work as doula here at the Brookhaven Birth center. She was on the Sisters By Heart recipient list, a care bag was being prepped to mail. Her little baby girl, <a href="http://ginaclowes.blogspot.com/2011/04/phoebe-leilani-clowes.html">Pheobe Leilani</a> was born at 30 weeks, on April 11th, 2011. Phoebe was loved and snuggled by her parents for two and a half hours before she joined God's kingdom.<br />
<br />
<br />
Looking back, down this one small path in my CHD journey, I see now, as the memories are recounted and the connections are mapped out - each personal story weaves together into a whole and it creates a fairly complete cross-section of CHD - a “sample” of what complex CHD looks like. I could create several tapestries like this, there are so <i>many stories</i> I know about and so many CHD warriors and family’s I’ve met. <a href="http://pinterest.com/ruth_h/the-faces-of-chd-congenital-heart-awareness-week-f/">CHDs are everywhere</a>. I could recount stories nationwide. Gwen introduced me to countless little ones, some I follow closer than others because simply - it would be a full-time job to keep up with all of the CHD's kiddos that have touched my heart. This account just happens to be my more local, “home-town” story.<br />
<br />
Of course a true cross-section of CHD would include stories about children who were born with a CHD that may not have needed surgery at the get-go. And that takes but a moment to fill in that statistic with personal, close-to-home stories. Starting again, with my small church family, there a six year old girl, <a href="http://blog.the-chaos.com/2012/02/08/congenital-heart-defect-awareness-week-how-far-weve-come/">Jade</a> who was diagnosed with a hole in her heart as an infant. Her's was "wait and see" approach that turned out well in a surprising turn of events. Step out a little further and there is the story of the daughter of someone I know via a close mutual friend. <a href="http://www.lovingthisjourney.blogspot.com/">Madison</a>, nine years old, was born with a hole in her atrium. Last summer after the problem did not correct itself at they hoped, she under-went open-heart surgery. A close friend from childhood, her little boy has pulmonary stenosis, something that requires watching and may never post an issue, but is none-the-less, a CHD.<br />
<br />
There you go, complete picture. CHD's from severe, to problematic, to minor, are indeed the number 1 birth defect in the country.<br />
<br />
I compiled all these stories onto a dedicated <a href="http://pinterest.com/lauriecarpenter/chd-close-to-home-families-in-harrisonburg-area/">Pintrest Board</a>, if you'd like to spend a moment to read about each child in more detail.<br />
<br />
So where does leave us, why am I paying homage to hindsight? Awareness. Simply put, it matters. It helps. It's useful - because if it's not you, it's someone close by - it's a little baby full of life, just needing some help with their heart, so they can stay here a little longer. It's their parents' hearts needing support from family, friends and strangers as they learn about strength and go to the end of "all it takes" to care for the little life, the tiny child, loaned to them. And the most important thing to me about awareness is that there are wonderful and simple ways to lend a hand of support to those living in CHD land. I can attest to the impact of at least two organizations. And please know even $5 is something. Please, consider supporting CHD causes during CHD Awareness week/Heart month and throughout the year. Thank you!Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-306107524532533616.post-34100325474024641972011-10-15T02:05:00.006-04:002011-10-15T03:35:34.961-04:00We miss our baby, so much.<div style="text-align: center;"><br />
</div><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2Dvr-nq057V9w_wdo1ZBYM1BMCbv4kmiXldIPBkLGo0mqVQwoZruyvhzdGzaRA50qttmO6b9wCJhJeQe9jLvMyfvq304hQA-4-SoXz5dRbcARpqlB0CxCkOrWwiQxaEm2LSpI3ijYqlcE/s1600/2010-05-04.jpg"><img alt="" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2Dvr-nq057V9w_wdo1ZBYM1BMCbv4kmiXldIPBkLGo0mqVQwoZruyvhzdGzaRA50qttmO6b9wCJhJeQe9jLvMyfvq304hQA-4-SoXz5dRbcARpqlB0CxCkOrWwiQxaEm2LSpI3ijYqlcE/s400/2010-05-04.jpg" /></a></div><div style="text-align: center;"><br />
</div><div style="text-align: center;">We miss our Gwen so much - everyday. I think more everyday. </div><div style="text-align: center;"><br />
</div><div style="text-align: center;">We were just getting to know you… to be with you… and we loved you since the moment we were expecting you… from that moment we laid eyes on you (how I remember that moment…). It's so hard to see you always not-here. Hard to love you this much, yet not be able to see you grow up. Hard to only have a handful of memories. Hard to wrestle down the memories of... the day you left. </div><div style="text-align: center;"><br />
</div><div style="text-align: center;">Sometime this summer something reminded your daddy about how I sang to you...he recalled how I sang to you while I held you.... that day.... after it all happened. I don't remember that, but he does. I just wish you could have heard me singing.</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">And I just want to fix it all...have you back... and it's hard.</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">I will just walk forever, I my gardens then...because if we had a flower, for every-time we think of you... </div><div style="text-align: center;"><br />
</div><div style="text-align: center;">-----------</div><div style="text-align: center;">I took this picture of her tree today. It is the "background" of the collage above. Her tree is still green while all around many other trees are at peak. I enjoyed the contrast. The whole arboretum sparkled with Autumn today while the weather struck the perfect chord of warmth and chill. The wind blew enough to carry the leaves up and around the sky. They fluttered in the sunlight and seemed to be alive, enjoying their new-found freedom. The clouds were pure white and large, lumpy and confident even billowing yet never blocking the sun for too long.<br />
<br />
I'm so glad we planted her tree there...it is so perfect. </div><div style="text-align: center;"><br />
</div><div style="text-align: center;">However, I find myself so often facing the ultimate end of what it means to be conflicted. I mean, let's be honest. I kinda hate this tree. For what it stands for, in place of, instead of, the reason Why it grows there in this spot. It sickens me to go see her tree.<br />
<br />
I love this little tree we planted. It's Gwen tree. But... it's Gwen tree.<br />
<br />
sigh. <br />
<br />
----<br />
<br />
</div><div style="text-align: center;">Today is October 15th and that is significant - as Gwen is not alone. I am thinking of so many other parents today... <br />
<br />
God bless, to all those whom we walk along side with. <br />
<br />
<h1><span style="font-size: large;">The Open Window</span></h1>by Henry Wadsworth Longfellow<br />
<br />
The old house by the lindens<br />
Stood silent in the shade,<br />
And on the gravelled pathway<br />
The light and shadow played.<br />
<br />
I saw the nursery windows<br />
Wide open to the air;<br />
But the faces of the children,<br />
They were no longer there...<br />
<br />
They walked not under the lindens,<br />
They played not in the hall;<br />
But shadow, and silence, and sadness<br />
Were hanging over all.<br />
<br />
The birds sang in the branches,<br />
With sweet, familiar tone;<br />
But the voices of the children<br />
Will be heard in dreams alone!<br />
<br />
And the boy that walked beside me,<br />
He could not understand<br />
Why closer in mine, ah! closer,<br />
I pressed his warm, soft hand!<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8paRya4QIxbbCTvF2I_ybC75fQLazZEhIzN4JuJAubHZLBJo_zOUNDbHwFQPhJfT1vbe1AQflVjZifwaVgGznM-TDEADWzRGceCEfaj8E66QOQ2_gStOqeLCeEdFehiwKla9qKkN3LCZ6/s1600/ribbon+%25281%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8paRya4QIxbbCTvF2I_ybC75fQLazZEhIzN4JuJAubHZLBJo_zOUNDbHwFQPhJfT1vbe1AQflVjZifwaVgGznM-TDEADWzRGceCEfaj8E66QOQ2_gStOqeLCeEdFehiwKla9qKkN3LCZ6/s320/ribbon+%25281%2529.jpg" width="177" /></a></div><br />
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</div>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-306107524532533616.post-59742815278201171172011-07-23T23:21:00.002-04:002011-07-23T23:25:18.264-04:00To Honor MiaToday, I'm thinking of <a href="http://miagracesheartjourney.blogspot.com/">Mia Grace Marrone</a>.<br />
<br />
To share her with you, to honor this little baby's life - I am debuting the "Sisters By Heart video" for the first time on Gwen's blog and posting a link to a story titled "An Arranged Friendship." It is about Mia and her CHD-warrior friend Zoe. <br />
<br />
My heart aches for Mia's family as they face a time or remembrance of the events of one year ago, how their little girl was so suddenly taken. Their three year old son couldn't understand why his little baby sister was not with them anymore. Mia's twin brother was left without his twin sis. And another mother and father were facing pain beyond pain. <br />
<br />
Mia's mother wrote;<br />
<br />
"I can still hear her cry, see her laugh. It is just hard. It seems that every time I see a baby girl around her age it tugs my heart. I know they say it is not supposed to be easy but there is no words to even begin to explain.<br />
<br />
For the 87 days she was here she was my everything. My hope, My dreams, my inspiration and strength to go on. I would continue going every night on no sleep if I had to. She taught me so many things about life. Life is so short for fighting and selfishness. It is hard to imagine in that moment that God already had a plan from the time she was conceived. I hate that plan but maybe in time I will See why. I just think about who she could have become and who she really looked like. It is all just gone in the blink of an eye.<br />
<br />
I am very proud of the things I have done and the awareness that has been raised for congenital heart defects. She came into this world with me and left with me. As the priest said during her service, 'Ray and Jennifer are not angel makers, they are Saint makers. Mia Grace touched more lives in 87 days than many touch in 87 years. For in my eyes she is a Saint. She brought together a community and taught many about hypoplastic left heart syndrome and the importance of congenital heart defects. In my eyes she is a saint.' "<br />
----<br />
<br />
I remember being so excited - I remember seeing the twins on facebook after they were born at CHOP and wondering how this mother was going to take care of a heart-healthy newborn and a HLHS newborn who had to stay in the hospital while also caring for a toddler. It made our then-recent time at CHOP seem like a walk in the park. <br />
<br />
That little Mia and her twin brother Madden, I remember being so happy for Jennifer and her husband Ray. I am saddened for them now as it will be one year for them on the 25th of this month. <br />
<br />
So, in honor of Mia - here now, the Sisters By Heart video: <br />
<br />
<iframe allowfullscreen="" frameborder="0" height="349" src="http://www.youtube.com/embed/AQjtpIGvwIg" width="425"></iframe><br />
<br />
And,<br />
<br />
<span style="font-size: large;"><a href="http://thelihns.blogspot.com/2011/01/arranged-friendship_07.html">An Arranged Friendship by Stacey Lihn</a></span><br />
"Can you imagine your best friend dying? It's heart-breaking to even think about. Someday, I'll have to break the news to Zoe that her friend, Mia, died, just shy of her 3 month birthday."<br />
<br />
Read the full story here: <a href="http://thelihns.blogspot.com/2011/01/arranged-friendship_07.html">Arranged Friendship</a><br />
<br />
----<br />
My love, care and prayers to the Marrone family.Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-306107524532533616.post-43026244100632933672011-06-11T10:01:00.003-04:002011-06-15T19:05:58.918-04:00Happy Birthday MarieGwen would have been one year old, back in March. You would have been 21 today. You both shared your "0" year - it would have been fun to always know you were the same "ten". So many things would have been fun if you were still here. I'd see you today, on your birthday, when we get into Chatt - it would have been fun! <br />
<br />
Lil made up a memory, or maybe it is real - I just don't know - but she said one day, "rmember how Aunt Marie used to say, (and she spoke in sweet, happy voice that I could really hear you saying) "Whooooo ate the cupacke?" So, my plan is to always have cupcakes on your birthday :)<br />
<br />
Here's us remembering you and Gwen on May 14th, 2011.<br />
<br />
<iframe width="425" height="349" src="http://www.youtube.com/embed/v_rnV-6hSlY" frameborder="0" allowfullscreen></iframe>Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-306107524532533616.post-19025565933335493512011-06-06T10:17:00.004-04:002011-06-06T20:19:36.512-04:00"“There’s no cure. If this works, I have 4 years, if not, 6 months.”On my side and my husbands side of the family we have several cousins on our hearts who are fighting cancer (one, on my side recently lost his battle). They are all around my parents age. I know too many friends who's parents battle/have battled cancer. I know of children too... Cancer is so <i>devastating</i> and everywhere it seems-<br />
<br />
I have two friends who are cancer survivors - both mothers (one who wasn't given hope that she'd live to have a child the other unsure if she'd be able to stay with hers). Both faced unbelievable odds. To-date they are both cancer-free.<br />
<br />
This sweet, sad, story written by my cancer-warrior, cancer-survivor, friend - a mother of three, -well, it just is sad and sweet and real...and I wanted to share it...<br />
<br />
<a href="http://www.springofjoy.org/the_library/its-not-about-age">It's Not About Age: http://www.springofjoy.org/the_library/its-not-about-age</a><br />
<br />
Keep funding cancer research, keep praying for the cure and be aware of the blessing of good health when you are so blessed... don't miss that... and even better, while you are healthy - take up a cause to support - causes like this shouldn't just be left to those who are personally affected. Take up more than one!<br />
<br />
"Life is a tragedy, confront it...Life is too precious, do not destroy it.<i> Life is life, fight for it.</i> -Mother Teresa (thanks to CHD warrior Zoe's mama - I found this quote on her bog and it's kinda my mantra now).<br />
<br />
And while I'm here - I want to share one way you can help that I know of personally- below is a link to Jason Williams' story - he is a friend of Becca and Patrick and baby Connor (my sister and brother-in-law and new nephew). He is battling Pancreatic Cancer:<br />
<br />
<a href="http://www.jasonhenrywilliams.com/p/my-cancer-story.html%20">http://www.jasonhenrywilliams.com/p/my-cancer-story.html </a><br />
<br />
Here is a short summary written by Jason: <br />
<br />
"<i>The doctors at Johns Hopkins have decided that the vaccine trial might not be the safest or best way to treat my cancer. They believe that my many episodes of pancreatitis, irritated an already present cyst and lead to my cancer. I will be making trips up to Baltimore/Johns Hopkins for Pancreatitis clinics and to see specialists who can hopefully cure or manage my pancreatitis. If this is possible, they believe that my cancer will more than likely not return....</i><br />
<br />
<i> I am accepting donations to help pay for my Pancreatic Cancer treatments. You can donate safely and securely, using your debit/credit card via PayPal.</i><br />
<br />
<i>Thank you all for your continued support through this journey - it means a lot!</i>"<br />
<br />
My sister-in-law, Becca shared Jason's story with me a while back. She is the one who was there to help us when Gwen was born - who posted for us on this blog many times...goodness, she is the one who announced for us here, the loss of precious Gwen, she is whom we have to thank for the enormous amount of great photos we have of sweet Gwen <i>(and</i> of Lillian too) and in this small way, I want to pay-it-forward and use this blog to help support her friend - I can vouch for the legitimacy of this story and website, so I wanted to do so - so there you go - if you are so inclined to donate, there is one little thing you can do to support someone struck by cancer.Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-306107524532533616.post-22285837996954392682011-05-24T01:08:00.001-04:002011-06-03T11:59:28.937-04:00A Moment for CHD AwarenessCall me crazy, but a "no brainier," completely painless, dirt cheap, and super-fast test that could reveal serous heart problems is the <i>LEAST</i> we can do for tiny persons just beginning their life... <i>however</i> few and far between babies with CHD may be (ahem, the # 1 birth defect). If one life is saved, that is enough for me.<br />
<br />
In Missouri it's called <a href="http://fitbottomedmamas.com/2010/11/raising-awareness-congenital-heart-defects/">Chloe's Law</a> - here, for me, writing from Virgina - I'm going to call it "Gabe's Law" for now. What do these two children have in common? They were both born with undiagnosed CHD's that could have taken their life rapidly. They both had doctors, who at first, actually downplayed the symptoms the parents raised (keep this in mind by the way, this idea of doctors missing symptoms of serious heart defects, just remember that...you'll enjoy the irony later). <br />
<br />
I don't know Chloe, but I found her story online and was impressed by her mother's work on the "pulse ox issue." I do know Gabe. He lives nearby. Gabe was born with Truncus Aterious, like Gwen. At some point - I'd like to share more about Gabe and his family - but I have to stay on point -however his mother has been an integral part of support on my journey. For now, let it be known that Gabe is a thriving, smiling, 9 year old red-headed little boy. But he is one of many examples that, yes, CHDs can be easily missed.<br />
<br />
I have to say, I appreciate this news article (which I will link to momentarily). <i>Finally</i> a journalist did some real leg work regarding pulse ox and dragged some meaty information out into the light. I've had questions - I couldn't understand why this was a decision a governor might have to ponder. Babies life? What's to think on? Move the pen. Right? I read this article and I now feel more fully "versed" on the issue, more "balanced" if you will. And my "stand" on the issue remains the same. Move the pen.<br />
<br />
This article offers some insight into well, the "issues" raised <i>against</i> mandating this test as <a href="http://newborncoalition.com/newborn-coalition-applauds-federal-advisory-committee-recommendation">recommended by the department of health and human services</a>. And while I'm glad to have some points to address as I try to help spread awareness for this issue - I have to say, I had to pick myself up off the floor first, after reading this article. <br />
<br />
Before I go any further - I want to address the "issue" of bias - that I sound like a crazy "baby-loss" mama who is a giant alarmist who needs attention or perhaps is hyper-vigilant and over-sensitive and ya know, have lost my perspective. You know, the argument being that I am too close and all I see is CHD everywhere and I'm trying to make every one afraid. <br />
<br />
Let me offer this, and take it or leave it, but I'll toss this other thought out there. I desperately want every baby that is born to have the best chance possible - and this (helping promote mandatory pulse ox tests into law) is ONE SMALL, tiny, minuscule thing I can do based on the "experience" and "knowledge" I bring as part of the CHD word and part of the "baby-loss" world.<br />
<br />
I think of all my friends and family their children and beg God to keep this type of pain local - here - and never touch anyone I know with this kind of loss... I simply want to do what I can with what I know. And believe me, I know about CHD. Should I just sit on it?<br />
<br />
In particular let's talk about this "kind of loss" (a baby dying from an undiagnosed CHD) and what I know about it from the "underground" world where "baby-loss moms" and "heart moms" meet up and share their stories and support each other: A baby, undiagnosed with CHD can die in a mothers arms while nursing. It doesn't happen often. Yes, it is rare. It is also preventable. Preventable trumps rare any day. <br />
<br />
<a href="http://www.corasstory.org/2009/12/coras-story.html">Read about Cora here</a> if you think I'm being a dramatist. <br />
<br />
I'm an advocate for all moms, moms who don't know about this- until -well, you get the diagnosis for your baby....). Believe me, YOU DON'T want your baby to die if you can help it, you don't want your friends baby to die, you don't want your neighbors baby to die - and yes, it "may not happen much" <i>but if we can save even 1 life this year</i>...isn't it worth the few minutes it takes to strap a tiny strip to a baby's toe and get an oxygen reading 24 hours after the baby is born? <br />
<br />
I honestly can't believe there is any "argument' here...but read this article and see - there are people who are shooting down this proposal:<br />
<br />
<a href="http://www.northjersey.com/news/122406383_Test_to_detect_heart_disease_in_newborns_may_be_mandatory_in_all_hospitals_.html"><b>Test to detect heart disease in newborns may be mandatory in all hospitals.</b></a><br />
<b> </b><br />
And seriously - one argument proposed is that this test might give parents a false sense of security. Apparently there is concern that if parents are told their baby passed the pulse ox test they, "wouldn't seek medical care for symptoms that may develop later" - Um, excuse me - there is a remedy to that - it's called the written and spoken language. And pardon me as I get up off the floor...<br />
<br />
Hopefully, doctors, you are giving plenty of information to new parents regarding ALL the tests and procedures preformed. Perhaps you even hand out information regarding other helpful areas relating to newborns (nursing, bathing, car seats, shaken baby syndrome, symptoms of potential medical issues, just to name a few). <i>Please</i>, tell me you are handing out information about symptoms of the number 1 birth defect. And you can say it and write it, <i>that CHD's can be missed by pulse oximetry screening</i>, and stress that parents need to know the symptoms.<br />
<br />
Really. There is a "remedy"...to that "fear"... <br />
<br />
Also -let us take a moment to address CHD symptoms here on this blog and help keep "awarenss" up and I'll even set a ground-breaking example. I'll include a "disclaimer." <br />
<br />
<i>Although helpful in screening for heart problems present at birth, a "pulse ox test" only screens for certain defects</i>. Not all CHD's can be found by a pulse ox test, even severe ones can be missed. Here is more information regarding CHD's to keep in mind as you care for your newborn:<br />
<br />
"Some congenital heart defects have few or no signs or symptoms. A doctor may not even detect signs of a heart defect during a physical exam. <br />
<br />
Many heart defects do have signs and symptoms. They depend on the number, type, and severity of the defects. Severe defects can cause signs and symptoms, usually in newborns. These signs and symptoms may include:<br />
<br />
<ul><li>Rapid breathing </li>
<li>Cyanosis (a bluish tint to the skin, lips, and fingernails) </li>
<li>Fatigue (tiredness) </li>
<li>Sweating while feeding</li>
<li>Not gaining weight (failure to thrive) </li>
<li>Poor blood circulation" </li>
</ul><a href="http://chdbabies.blogspot.com/2009/08/chds.html">(source CHD Babies)</a><br />
-----<br />
<br />
All said, I can't believe for a moment this won't pass in NJ and every other state. So I'm gonna go chill-out now.<br />
<br />
But take a moment and read this article please, so I can know I'm helping to spread awareness. Spreading awareness really takes two here - I can't spread squat if you don't actually take in some of what I'm ranting about.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-306107524532533616.post-4979613394279509252011-05-16T02:43:00.000-04:002011-05-16T02:43:24.095-04:00It was a perfect day...<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><span style="font-size: large;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu7fdydmFZerWrllcxsRzws6VTSG8l6wkIqBrKtU2FoI_Zyj8XQJmtCIc81Ls0hssrazb_9w4eGtNYDSYQh1ihWXvAVGAwkVxoZd43qXjnJu74zFgauxFr0eVP7zJ6nXHAsbyRMM8em-C5/s1600/IMG_4977.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="333" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu7fdydmFZerWrllcxsRzws6VTSG8l6wkIqBrKtU2FoI_Zyj8XQJmtCIc81Ls0hssrazb_9w4eGtNYDSYQh1ihWXvAVGAwkVxoZd43qXjnJu74zFgauxFr0eVP7zJ6nXHAsbyRMM8em-C5/s400/IMG_4977.JPG" width="400" /></a></span><br />
<i><b>...except, they were not here. </b></i><br />
<br />
<div style="text-align: center;"><i><span style="font-size: small;"></span><b>May 14th, 2011 </b></i></div><div style="text-align: center;"><i><b> Remembering our baby girl and our little sister.</b></i></div><br />
----<br />
<br />
Thank you to so many who prayed for peace and sent their love our way this weekend - we found peace we felt the love and care. Thank you. It helped.<br />
<br />
More pictures and a video to follow... I couldn't get enough photos - it was so beautiful up on Skyline drive Saturday...and Lil's sweetness takes the cake in our little video.<br />
<br />
----<br />
<h1><span style="font-size: large;">The Open Window</span></h1>by Henry Wadsworth Longfellow<br />
<br />
The old house by the lindens<br />
Stood silent in the shade,<br />
And on the gravelled pathway<br />
The light and shadow played.<br />
<br />
I saw the nursery windows<br />
Wide open to the air;<br />
But the faces of the children,<br />
They were no longer there.<br />
<br />
The large Newfoundland house-dog<br />
Was standing by the door;<br />
He looked for his little playmates,<br />
Who would return no more.<br />
<br />
They walked not under the lindens,<br />
They played not in the hall;<br />
But shadow, and silence, and sadness<br />
Were hanging over all.<br />
<br />
The birds sang in the branches,<br />
With sweet, familiar tone;<br />
But the voices of the children<br />
Will be heard in dreams alone!<br />
<br />
And the boy that walked beside me,<br />
He could not understand<br />
Why closer in mine, ah! closer,<br />
I pressed his warm, soft hand!<br />
<br />
---- <br />
<h1><span style="font-size: large;">The Reaper And The Flowers</span></h1>by Henry Wadsworth Longfellow<br />
<br />
There is a Reaper, whose name is Death,<br />
And, with his sickle keen,<br />
He reaps the bearded grain at a breath,<br />
And the flowers that grow between.<br />
<br />
<q>Shall I have nought that is fair?</q> saith he;<br />
<q>Have nought but the bearded grain?<br />
Though the breath of these flowers is sweet to me,<br />
I will give them all back again.</q><br />
<br />
He gazed at the flowers with tearful eyes,<br />
He kissed their drooping leaves;<br />
It was for the Lord of Paradise<br />
He bound them in his sheaves.<br />
<br />
<q>My Lord has need of these flowerets gay,</q><br />
The Reaper said, and smiled;<br />
"Dear tokens of the earth are they,<br />
Where he was once a child."<br />
<br />
<q>They shall all bloom in fields of light,<br />
Transplanted by my care,<br />
And saints, upon their garments white,<br />
These sacred blossoms wear.</q><br />
<br />
And the mother gave, in tears and pain,<br />
The flowers she most did love;<br />
She knew she should find them all again<br />
In the fields of light above.<br />
<br />
O, not in cruelty, not in wrath,<br />
The Reaper came that day;<br />
'Twas an angel visited the green earth,<br />
And took the flowers away.<br />
<br />
----Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-306107524532533616.post-3848488613931153572011-05-13T16:03:00.006-04:002011-05-13T16:20:50.912-04:00"Life is a tragedy, confront it.""<i>Ever has it been that love knows not its own depth until the hour of separation.</i>" <span style="font-size: x-small;">-Kahlil Gibran</span><br />
<br />
Friday, May 14th. 3:30 & 5:30. Gwen. Marie. The hours of separation. It was <i>this</i> Friday in May -it was a Friday - and it hurts as though it was yesterday.<br />
<br />
I find, myself, that Love for children is outside of time...and this type of wound - well it kinda stays... You get <i>stronger</i> in carrying it but only as any muscle forced to work will grow in accordance - the "Grief" muscle grows, the weight never changes. My baby-loss companion, Michelle writes, "The weight of the grief? Is always the same. Maybe some days, it's easier to pick up - but the size never changes. It's always heavy."<br />
<br />
“<i>Strength is born in the deep silence of long-suffering hearts; not amid joy.</i>”<span style="font-size: x-small; font-weight: normal;"> - Arthur Helps</span><br />
<br />
Yep.<br />
<br />
And Friday morning, the same day in May - is here...and I see it all...I know, this time I know now how today will pan out...<br />
<br />
<span style="font-size: small;">" <i>Little I knew that morning, God was going to call your name, > in life we loved you dearly, in death we do the same.</i> " (repeat twice when you read this.)</span><br />
<br />
And I can conjure up in a split second ache, tears, and longing and devastation that is no different from the moment "it happened" - I saw my child die - I held her helplessly in a hospital room next to my husband a child whom hours earlier we cooed and awed at. You don't just "move on" - not from a day like that. You change entirely. And in conjunction, you slowly grow your "sadness muscle" so you can carry it all with you - because you don't get a choice. Strength does not come from joy.<br />
<br />
I remember that little smile that morning. I lament we didn't get more - that was the first. I remain grateful for that smile...but to love is to want... I wish I had more smiles to "lean on" as I do Marie's laughter.<br />
--<br />
<br />
Twice in one day the phone would bring us news of horrible things, a heart stopping in our baby girl and our sweet sister's life being lost in a fall from a high place in the woods. This spring, this May, I watched it again - even as I know it is over - but this is the first time I marked the days and "watched" it play out.<br />
<br />
On the other side, after this anniversary of death - perhaps I'll have changed, perhaps some bit of release and relief will come between the first and this second time it all happened. But in truth, I'll be walking on the very same path and with many cruel moments still to come, as Gwen and Marie are not here and this time I don't have shock to "protect me."<br />
<br />
I am at once always devastated, always so sad - and I've lost before - but there is something about those younger than you - the "love roots" are entwined differently, they rooted into the bottom of my heart - whereas those older than me, I was rooted in theirs. They left "late enough" that I had completely established my own depth of roots, separate, mostly from them. Their loss tore merely from the top of my heart - I still think on them, still wish them to be here, I still love them and treasure their memory... but those rooted deep at the bottom of our hearts, those we watch grow up - they are ripped from the deepest place in hearts and pulled through, entwined with your roots all the while being torn <i>mercilessly</i>.<br />
<br />
And three times in one year. We are worn out. I just feel worn out. And I just want them back. I'm not strong...<br />
<br />
I loved those we lost. "<i>To love is to want</i>" - I'll accept there will be no peace to be found regarding their sudden absence and the trauma of how each left...and I'll keep loving them and wanting them back in our lives. And as your gain no strength from joy, I'll keep getting "stronger" in a way no one ever wants to. I wouldn't trade this for a thing, I know, I know - this is the cost of having had them in our lives - and they are worth it - I wouldn't have wanted to not know them... but even so, their losses are what they are - <b><i>tragedies</i></b> - and always will be.<br />
<br />
It is over, and yet, it is never over - it is always open-ended, always heavy.<br />
<span style="font-size: x-small;"><span style="font-size: small;"><br />
</span> <div style="text-align: left;"><span style="font-size: small;">"<i>There is no more ridiculous custom than the one that makes you express sympathy once and for all on a given day to a person whose sorrow will endure as long as his life. Such grief, felt in such a way, is always "present," it is never too late to talk about it, never repetitious to mention it again.</i>"</span><br />
<br />
<div style="text-align: left;"><span style="font-size: xx-small;"><i>-Marcel Proust</i></span><br />
<br />
---<br />
<span style="font-size: small;"><i>There you were, and it was like spring </i></span><br />
<span style="font-size: small;"><i>like the first fair water with the light on it,</i></span><br />
<span style="font-size: small;"><i>hitting the eyes.</i></span><br />
<span style="font-size: small;"><i>Why are we made the way we are made, that to love</i></span><br />
<span style="font-size: small;"><i>is to want?</i></span><br />
<span style="font-size: small;"><i>Well you are gone now, and this morning I have walked out</i></span><br />
<span style="font-size: small;"><i>to the back shore,</i></span><br />
<span style="font-size: small;"><i>to the ocean which, even if we think we have measured it,</i></span><br />
<span style="font-size: small;"><i>no final measure.</i></span><br />
<span style="font-size: small;"><i>Sometimes you can see the great whales there,</i></span><br />
<span style="font-size: small;"><i>breaching and playing.</i></span><br />
<span style="font-size: small;"><i>Sometimes the swans linger just long enough</i></span><br />
<span style="font-size: small;"><i>for us to be astonished.</i></span><br />
<span style="font-size: small;"><i>Then they lift their wings, they become again</i></span><br />
<span style="font-size: small;"><i>a part of the untouchable clouds.</i></span><br />
<br />
<span style="font-size: 85%;">- Mary Oliver</span><br />
<br />
<span style="font-size: 85%;">---</span><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGA2VYtjBh_GlYzFWl3_Zc6jqvIKqOTINtfJP_6EmMhautpCXIN3WhvGC8BR-85P-UC4oxmT4cbQGxktLhBoo66wpqkvawZG53JcOlizeCLVn-OE0X4jUDcho8XBH2yfzpKg_sstB89Ycc/s1600/best+carpenter+family+photo.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGA2VYtjBh_GlYzFWl3_Zc6jqvIKqOTINtfJP_6EmMhautpCXIN3WhvGC8BR-85P-UC4oxmT4cbQGxktLhBoo66wpqkvawZG53JcOlizeCLVn-OE0X4jUDcho8XBH2yfzpKg_sstB89Ycc/s400/best+carpenter+family+photo.jpg" width="400" /></a></div><div style="text-align: center;"><span style="font-size: 85%;"> The last photo taken of the Carpenter kids. It was at their Grandmothers funeral. I was 21 weeks with Gwen. </span></div><div style="text-align: center;"><span style="font-size: 85%;">Marie and Gwen are right next to each other. Missing is Aunt Liz and little cousins </span></div><div style="text-align: center;"><span style="font-size: 85%;">Lily Kate and Charlotte...so sadly, it's not everyone. But it's lovely we have this.</span></div><div style="text-align: center;"><span style="font-size: 85%;"><br />
</span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlzP_PhrwM1d4zeLd4i905ndmnf9XoAXIDf3KkIhLN0XOhjxJOhPo03BCin7wE8jW1mGot3mAp9Wq1iQkGYNryqnoBccOrEWQCmRMRK9ibUJLxJ1gXdfuv6FJk9oKKrxhNbtgJQdXzaVPg/s1600/2010-04-20.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="250" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlzP_PhrwM1d4zeLd4i905ndmnf9XoAXIDf3KkIhLN0XOhjxJOhPo03BCin7wE8jW1mGot3mAp9Wq1iQkGYNryqnoBccOrEWQCmRMRK9ibUJLxJ1gXdfuv6FJk9oKKrxhNbtgJQdXzaVPg/s400/2010-04-20.jpg" width="400" /></a></div><div style="text-align: center;"><span style="font-size: 85%;">The last photos I took. Last ones of Gwen. </span></div><div style="text-align: center;"><span style="font-size: 85%;">Last one of daddy and Gwen, mommy and Gwen and big-sis and Gwen. </span></div><div style="text-align: center;"><span style="font-size: 85%;">Taken in the end of April and May.</span><span style="font-size: small;"><b> </b></span><br />
<br />
<div style="text-align: left;"><br />
</div><div style="text-align: left;"><span style="font-size: small;"><b>The Broken Chain</b></span></div><div style="text-align: left;"><span style="font-size: small;"><br />
</span></div><div style="text-align: left;"><span style="font-size: small;">Little I knew that morning, God was going to call your name,</span></div><div style="text-align: left;"><span style="font-size: small;">in life we loved you dearly, in death we do the same.</span></div><div style="text-align: left;"></div><div style="text-align: left;"><span style="font-size: small;">It broke our hearts to lose you, you did not go alone,</span></div><div style="text-align: left;"><span style="font-size: small;">for part of me went with you, the day God called you home.</span></div><div style="text-align: left;"><br />
</div><div style="text-align: left;"><span style="font-size: small;">You left us beautiful memories, your love is still our guide, </span></div><div style="text-align: left;"><span style="font-size: small;">and though we cannot see you, you are always by our side</span></div><div style="text-align: left;"><span style="font-size: small;">. </span></div><div style="text-align: left;"><span style="font-size: small;">Our family chain is broken, and nothing seems the same,</span></div><div style="text-align: left;"><span style="font-size: small;">but as God calls us one by one, the chain will link again.</span></div><div style="text-align: left;"><span style="font-size: small;"><br />
</span></div><div style="text-align: left;"><span style="font-size: small;">-Author Unkown</span></div><div style="text-align: left;"><br />
</div><div style="text-align: left;">-------</div><div style="text-align: left;"><br />
</div><div style="text-align: left;"><b><i><span style="font-size: small;">Life is an opportunity, benefit from it.</span></i></b></div><span class="Apple-style-span" style="border-collapse: separate; color: black; font-family: Times; font-size: small; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; orphans: 2; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;"><span class="Apple-style-span" style="color: #333333; font-family: Georgia,Times,serif; font-size: 13px; text-align: left;"><div class="post-body entry-content" style="line-height: 1.6em; margin: 0px 0px 0.75em;"><div style="color: black;"><b><i><span style="font-size: x-small;">Life is beauty, admire it.</span></i></b></div><div style="color: black;"><b><i><span style="font-size: x-small;">Life is a dream, realize it.</span></i></b></div><b><i><span style="font-size: x-small;"><span style="color: black;">Life is a challenge, </span>meet it.</span></i></b><br />
<b><i><span style="font-size: x-small;">Life is a duty, complete it.</span></i></b><br />
<b><i><span style="font-size: x-small;">Life is a game, play it.</span></i></b><br />
<b><i><span style="font-size: x-small;">Life is a promise, fulfill it.</span></i></b><br />
<b><i><span style="font-size: x-small;">Life is sorrow, overcome it.</span></i></b><br />
<b><i><span style="font-size: x-small;">Life is a song, sing it.</span></i></b><br />
<b><i><span style="font-size: x-small;">Life is a struggle, accept it.</span></i></b><br />
<b><i><span style="font-size: x-small;">Life is a tragedy, confront it.</span></i></b><br />
<b><i><span style="font-size: x-small;">Life is an adventure, dare it.</span></i></b><br />
<b><i><span style="font-size: x-small;">Life is luck, make it.</span></i></b><br />
<b><i><span style="font-size: x-small;">Life is too precious, do not destroy it.</span></i></b><br />
<b><i><span style="font-size: x-small;">Life is life, fight for it.</span></i></b><br />
<br />
<span style="font-size: x-small;">-<i>Mother Teresa </i></span><br />
<br />
<i>"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day." <span class="redheading"> 2 Corinthians 4 </span></i><br />
<br />
</div></span></span></div></div></div></span>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-306107524532533616.post-67261595603769473442011-05-12T15:00:00.004-04:002011-05-13T16:23:38.191-04:00"Thursday before..."A song for today, <a href="http://www.youtube.com/watch?v=gBYrRPSG-Rs">listen here</a><br />
<br />
A video that someone made - that speaks perfectly how this year has been, how I am now...and my thankfulness always to the care extended towards us - as the narrator says:<br />
<br />
"I'm so thankful to those who without you my tragedy would have been unbearable. To those who were around me to hold my hand and catch my tears...thank you"<br />
Watch it here: <a href="http://www.youtube.com/watch?v=btHzZFUMPDY">When A Baby Dies</a><br />
<br />
And so many thoughts.<br />
<br />
Notes on Grief- as I try to step out and observe it - it has gotta be the strangest human "thing." Are we that egotistical or is it that we do love that deeply and our love reflects its s Divine Source... when I think on that I do feel better. It's <i>only</i> Love and it <i>can</i> nearly kill you.<br />
<br />
Sometimes I judge myself, but then I recall that a West Point grad/a five-star general/American President found himself undone by child-loss: "That was and still is the great disaster of my life - that lovely, lovely little boy... There's no tragedy in life like the death of a child. Things never get back to the way they were," explained Dwight D. Eisenhower.<br />
<br />
Recently I met a little girl and yet, never met her in person as I had hoped - I instead went to her funeral service. It was a Catholic service. The last Catholic service I attended was my dear Grandfathers, years ago, and I never forgot how surrounded by God's Grace I felt - I remember being glad to know that was where my Grandfather went every week - that that was who his Priest was - he had a good church.<br />
<br />
This tiny little baby's service moved me as much. The Priest spoke with complete confidence - saying something along the lines of, either we are all duped by some big hoax, either it is true or not (God) and she is either with God and now a Saint watching over or not, and then if not, at least she is not subject to being fooled like all the rest of us still here.<br />
<br />
At another point in the service he exclaimed calmly what he believed with assurance,<br />
<br />
"she is with God now - who loves her more than her parents were willing to love."<br />
<br />
I could feel that one. Wow. Now, <i>there</i> is a way to speak of heaven on no small wishy, washy terms - and it got me thinking, the whole message of the Bible, is how all of this is not even about us - but about God not wanting to loose us and about God existing for his own Glory - for His sake. He didn't want to loose Gwen far more than me - according to scripture. So the promise I am given in this painful place of longing - is that has been taken care of... and not even for my sake.<br />
<br />
In the meantime - to be honest, I'm borrowing all the Faith I can - as it's all too good to be true, I need it so badly that I don't believe a word of what I say to myself. It's all too convenient - to talk about a happy ending. I believe it more if you think of it on a level far beyond us, as I mentioned above - but for now - I just know that despite all the pain, there still is much beauty and I know the "darkness" is the smallest measure of man - and yet it is what human nature excels out, finding ways to feel and stay down. So I can "get through" this even while I'm in it and be okay... and if you have Faith then I'll borrow yours, I'll believe you for now and in the mean time, the only thing I know for sure is you gotta try to "make hay while sun shines."<br />
<br />
And back to humanity and my narrow little world -back to observing my "grief"- what has surprised me there is so little control in it and much of its power dwells in your sub-conscience (I'm sad now simply in response to the weather - my senses recall a baby in the spring - and all "shock" has worn off - I <i>feel</i> her not here more than ever before). I can't talk myself out of it - and I also don't believe I should - I need to somehow, live it again but for the first time with foreknowledge - it's part of facing reality.<br />
<br />
And it is like I'm loosing her again. And today, this Thursday is the hardest I believe. This week...all the "last days" of her life, and today, the last full day we had together - last days of peace and no trauma... and knowing it this time around, that a year ago this Thursday would be my last day and night with tiny, little, Gwenyth Graham. That, also, we would get a call about Marie the next day... a confusing message from Myers' grandmother that ended with, "I think she's dead..."<br />
<br />
I recall Lil in her bed -the "Thursday before" - waking up from her nap. I told her we were all going out to a plant nursery. Somehow the subject came up of leaving Gwen behind - I explained to Lil that Gwen would be sad if we did that and that no I wasn't going to leave Gwen, she was coming with us.<br />
<br />
We were living normal life - Lillian was learning about having a sibling and I was busy with two kids and a house- and hoping to get some plants in the empty places in our garden beds, I picked Myers up from work and off we all went...and Gwen was dying all the while - she was sick and I didn't clue in.<br />
<br />
A tree now stands in Gwen's memory here at our arboretum. The plaque is there with her name on it (I've not seen it yet). It's a tree I stood at, at the nursery, looking at and admiring while holding Gwen in my baby carrier, while Lil played in the puddles around the nursery. It is a Butterfly Japanese Maple and I stood beside it holding Gwen the day before she died.<br />
<br />
Yes, she died on the 14th, but she died on a Friday and today is the hardest day, I think. I remember the Thursday before...<br />
------Unknownnoreply@blogger.com2