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.
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.
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...
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...
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~
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