Monday, January 31, 2011

Smiling for CHD Awreness

Well.

This is a big month. It is Congenital Heart Defect Awareness month. I ask, that if you will, please loan me an audience here so I can help spread awareness in my own little way...it's how I love her actively now. It's how I still care for Gwen. So please, indulge me and spend a little time here and hopefully you will be amazed at what you learn. There's a lot to share. It's not all doom and gloom. Not at all. My goal is to have several posts up this month... so we'll see... but thank you in advance, for spending a moment on CHD awareness.

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Currently, I'm working on a special project for Gwen, for her fellow CHD Angels and Warriors. It's a little 10x 10 shadow box to be displayed at our local Children's museum. As I mentioned, I hope to get to this blog as well, but I have a deadline for the box that trumps my time here for now... My plan, if I can pull it off, is to add depth to whatever I manage to squeeze into the museum display- fleshed out and more complete here.

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This project required research. I spent hours chasing down details and seeking answers to questions and checking facts.

I think what struck me the most, in the last few days where I pretty much haven't stop working on my research for the tiny presentation - is how much I didn't know - or at least, how much there is to know about CHD. And well, ironically, how little scientific research there is for CHD.

It is not okay. It will change...as God as my witness...it will, and to be honest, I do believe something is already starting to happen - I think funding and research are starting to pick up, I'm just hoping and praying it will snowball and FAST.

So tonight, as I came here to this blog to post, I thought about how I would have never had this kind of time to research CHD as deeply, if...well, if things were they way I wish they were, and she was here with me. It is hard being a CHD parent.

When you are a CHD parent -you are thrown into a new world without much time to get your bearings before your child is born (and this is only if you are fortunate enough that whomever preformed your 20 week ultrasound picked up the defect, this does not always happen....not by a long shot - some babies even go home without their serious heart defects being detected...).

Either way, there you are with a child in need of care and time (which you give without thought) and you don't have the luxury of spending hours and hours researching. I used to try. I did. I was determined to be ready and geared up for Gwen's next surgery.

I wanted to know what it really meant for her to have a "double valve replacement" and everything I could about valve replacements. I wish I had spent more time learning the signs of illness in a baby... I wish I knew that they can have hardly any symptoms and be deathly ill without a fever (sigh)...

Anyway, the bottom line here is that my heart goes out to all the CHD parents and the "CHD Warriors" out there, children and adults alike. For every breath God gave Gwen I want her name to bless and bring awareness 10,000 fold and more, to those still fighting on - who need funding for their cause and support for the families.

I love the quote that states, "You never know how strong you are until strong is the only choice you have" - that about says it for the parents of children with heart defect and any life threatening illness or situation. And it is the most draining, life-altering, demanding "strength" that you'll lean on and draw from willingly, unquestionably, and as long as it takes...

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However, the whole reason I wandered over here was not to ramble on...but to share this photo, as my first "item" for CHD Awareness month. What struck me is - well, we are smiling in this photo while next to us, a four-day-old baby lays hooked up to, well, some awful looking stuff - and this child, she is our child, little sister, sweet newborn baby. Why are we smiling? How could we be smiling?


I'll tell you why. It's not strength. We were not "making the best of it." It wasn't an attempt to gloss things over.

We were smiling because at that time, we didn't know if that would be one of our only family photos.

We smiled because we wanted to show her years later, how amazing she was in her recovery.

We smiled because we were all together, the four of us, the Myers and Laura Carpenter family of four - with two little girls...

And I'd give anything to have that moment back... to stand next to her again, probably somewhat in shock and totally helpless, but there with her... with her... to reach my hand out and hold her little arm and hand... to be with her...
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She is not the first child to lay here next to her smiling mommy and daddy and siblings. She will not be the last. What can you do? Give blood. Donate to the CHD organizations. Give to Ronald McDonald Houses. Find out how to support your local Children's hospital and do it. Get your children involved too. And when you do, know that Gwen is smiling and says ~thank you~

God Bless.

12 comments:

  1. Laura, this is absolutely beautiful. Thank you for sharing this. Much love to you this month...

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  2. Beautiful Laura. I love this family picture. I love you, your family and will always have a special place in my heart for Gwen.

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  3. Beautiful. Thank you for sharing, Laura.

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  4. You're an inspiration, Laura. Thank you so much for being such an advocate, not only for Gwyneth, but for all CHD babies.

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  5. Thank you, Laura. I think of you, Myers, Lil and Gwenyth all of the time. Thank you for taking the time and energy to help fight CHDs. If we can help just one more heart from breaking, our efforts are well worth it. Let's keep up the good fight my dear friend. I love you.

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  6. Great post Laura. I know that awareness has definitely grown because of Gwen and your efforts to honor her. Thanks for sharing sweet friend.

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  7. Thank you Laura. That was really beautifully put. And as you well know, that is my absolute favorite quote to describe what we and many other families have been through. I so vividly remember spending those few weeks next to you guys in pod 4 and how loving and caring you all were. Those memories will never escape my head. I remember thinking how strong you all were while I seemed to be a mess 24/7...well you still are the strongest person I know and such an inspiration to us. We love you guys!

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  8. Erica. I can't accept that from you, but thank you. I never thought of you as a mess. Not once. You all pretty much never left Lukes side - you were there when we left and there when we arrived. Both of you. And you all had another little girl just like us...so you, like us were torn in two that way...

    I also appreciate you guys and Katy - making me laugh. I remember that a lot. I needed that so much. It helped. It was hell. It felt so much like we'd never join the real world again (and to some extent, well, we won't...)

    And we went home with one med. and an NG tube that she didn't need two days later. Our post discharge care for Gwen, well, comparatively, it was a cake walk (sometimes I wonder if I would have been better tuned-in and picked up that something was wrong had she been on more meds, how crazy is that?).

    There by Lukes side early morning and half the night, sleeping in the closets with the weird echos from the emergency room down below, and going home after months of serious and scary ups and downs with a care regimen that highly skilled nurses are trained for - that's not my picture of a mess.

    But, I know, it's not like you had a choice- heck you guys didn't even know until he was born there was anything wrong. So yea, that quote is perfect. I first heard that quote from Kathy Baker on facebook, I think, - and yea - she nailed it finding that one.

    Also, to everyone who commented...thanks for sharing this memory with me! :)

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  9. Laura,

    Gwen continues to make an impact on our thoughts and hopes (and hopefully actions) through the stories and information you share with us here.

    I will continue to donate my "baby blood" whenever I can; thanks for reminding me to stay motivated to do so! I hope my blood makes it to the babies who need it!

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  10. Your life is an inspiration. I praise God that I know your family. I cannot wait to see your pain and sadness reversed, and your joy made full in Heaven. How sweet it is that God has reversed the finality of death for us, and given you such a mission to "rescue the perishing" and comfort those who mourn (because you know their pain) while you wait to be reunited with your precious ones.

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  11. What a beautiful picture of a precious, loving family! Thank you for sharing this post and allowing all of us to witness your amazing love and strength! - Jessa Berry

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