Did any of you watch Boston Med Thursday night? If not, you can check it out right below, and I highly recommend that you do. The show follows several different patients, but the reason we watched it was because it featured baby Sam, born with HLHS (which is pretty much what Derrick has, but D has some added issues that make his heart not 'technically' HLHS).
If you haven't experienced the birth of a heart baby, or the emotions that sending your baby off to surgery bring, this can give you a tiny glimpse of what it's like. I have to admit that I sat there and cried through the whole show (the CHD part at least). Not that you really saw much, but watching Sam's parents discuss surgery before his birth, hearing the relief in his mother's voice as she said, "He's ok, he's ok," when she heard Sam cry for the first time, being in the operating room as the surgeons worked away on Sam's walnut-sized heart...it made me realize just how close to the surface my emotions of Derrick's birth still are. Days go by without me wallowing in the fear of Derrick's heart, but watching that brought up those emotions and memories that I thought were tucked away a little deeper. Obviously they're not. They're still very, very fresh.
I was looking at pictures my mom had on her camera a few months ago, and I came across these pictures of Derrick...
This was the very first time I was able to lay my eyes on him. Justin had taken pictures of him for me to see, but this is the first time I saw him myself. I asked the nurse if I could touch is hand, and she told me yes. I stuck my hand through that first window, touched his little hand, and then he was wheeled away.
I couldn't hold him, couldn't nurse him, couldn't even keep him in the room.
It shouldn't have to be like that.
But, because there has been an amazing amount of research done in the last 25-30 years, seeing Derrick wheeled out of my room didn't leave me completely devastated. Because of the sacrifices of many parents and children before D, I had an incredible amount of HOPE that he could be ok.
CHD research is still grossly underfunded. There have been great strides made in the last twenty five years, but they're not big enough. There are still children and adults fighting the CHD monster and losing everyday. There are still too many parents hearing that dreaded phrase, "There's something wrong with your baby's heart." They still haven't figured out what causes CHDs and how to really fix them. Permanently. Most of the surgeries done are merely band-aids in hopes that by the time another surgery is necessary, there's more research for a more permanent or better fix.
So...until CHDs are a no longer part of the world as we know it, we will fight.
We're finally doing it.
Together with some great heart friends who are also passionate about raising awareness and money for CHD research, Hope for BraveHEARTS has been born! And we couldn't be more excited!!
HBH will focus on raising money for CHD research and supporting our BraveHEART Baskets. Please, browse around the site www.hopeforbravehearts.org and let us know what you think. Get familiar with it because we have a LOT planned to get this baby going! Please join us in prayer that it is successful in it's mission and can help bring HOPE to many families!
There's a page on the site called "Our BraveHEARTS" where we would love to have TONS of CHD kids AND adults featured. If you would like your child (or yourself) on the BraveHEARTS page, send a picture, diagnosis, and link to your blog/carepage/caringbridge site if you have one. You don't have to have a site to be on the BH page, and you DON'T have to be in South Carolina either! This world wide web connects us deeply, and no matter where you are, your family, your story can bring someone hope. Even if the story doesn't have quite the ending you would have planned. We would love to have a page filled with the faces of CHD. If you're interested, email the info to firstname.lastname@example.org.
We have our first official fundraiser coming up too...a golf tournament! We have been blessed to be chosen as the recipient charity for the 2nd Annual Big Ears Classic at Mid Carolina Country Club on Saturday, September 25!! Pull out your golf clubs and come join us! You can print the form here or email me (email@example.com) and I'll send it to you. We would LOVE to have a full course with lots of hole sponsors and great prizes to raffle away! If you're interested in helping in any way, we'd LOVE, love, LOVE to have your help!
I'll keep you posted, don't worry! :)
Until next time, have a safe and happy July 4!
Don't worry...Biggie made plans!