In a normal life it's another month, no biggie. It's trying to remember to write a '2' instead of a '1' when you write the date. It's beginning the countdown to spring...and spring break! It's thinking about romantic plans with candle light, chocolate, wine and roses (do people still do that?! :). It's February. It's Valentine's Day. It's just another month.
But once you've entered into this exclusive club that no one wants an invitation to, the month of hearts takes on a whole new meaning. The "Heart Family" club changes all of that.
February is no longer about chocolate, fine wine and fancy restaurants. Now, February = AWARENESS time!
February is CHD Awareness Month, and in case you didn't know:
Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
Congenital heart defects are the leading cause of all infant deaths in the United States.
In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.
Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood. (Facts via CHF)
Until I became a "heart mom" I had no idea how everywhere CHDs are and how many birthdays they steal. Other than following the journey of sweet Emily Mae when I was in college, I had no idea babies even had heart surgery. I guess there was some foreshadowing there. Emily Mae didn't even make it to her first surgery, much less her first birthday. At least I had heard of heart defects before we were told "There's something wrong with your baby's heart," but many people who hear those words have no idea that babies are born with heart problems. Those are for old people!
If you're reading this obviously you're aware that Derrick was born with multiple heart defects. What you may not know is how many kids there are walking around with long silver scars hidden under their shirts. As you know, they don't look sick. They look like normal kids, not sick at all. They may be on the smaller side, or sometimes if you look closely you may see a tinge of blue around their lips or under their fingernails. But if you didn't see that scar you would have no idea of the complexity that beats in their chest.
Our kids looking normal is a blessing and a curse. If they looked sicker then more people would know about them. They would know about their struggles to simply walk up a flight of stairs without having to stop to catch their breath. They would know that getting them to grow is what feels like an impossible struggle because their hearts work so hard to keep their bodies alive that they're too tired to eat. They would know that nights before yearly, monthly, sometimes weekly visits to the cardiologist are sleepless and filled with "what ifs". And the paranoia of the child getting sick....unexplainable. I literally cringe when I hear people causally chatting about their child recently being ill yet playing with or near my child. A simple illness could land Derrick in the hospital and it could be awful before we even had a clue what hit us. I know it's not that people don't care, it's that people don't know. And that needs to change NOW.
I will never forget sitting in the parking lot before going in to meet the pediatric cardiologist for the very first time. We had been told the day before that there was something wrong with our precious unborn son's heart. As we sat there, both of us terrified to get out of the car, we prayed. We prayed...begged...that there be something that could done so we could bring our baby home and watch him grow up.
If I had control of the world no babies would ever be born with broken hearts. The words "congenital heart defect" would come up with nothing in all of the search engines. Sadly, yet thankfully, I do not have all control. I do know The One who does though. From the time Derrick was diagnosed at 24 weeks gestation we have always prayed that he doesn't suffer in vain, but that his fragile little heart and life be used for God's purpose and to bring Him glory.
The way we feel we've been led to do that is through Hope for BraveHEARTS. We, along with several other families, started HBH to raise awareness and money for CHDs. To date we've donated over $49,000 to MUSC's pediatric cardiology research department. Of course that's a drop in the bucket of billions of dollars needed, but it's something. CHD prognosis has come a long way over the last thirty or so years. There are very few adults who have hearts like Derrick's. It's very likely that had he been born 30 years ago he would have been sent home to die. Instead, we were filled with hopeful options when we found out about his heart.
Someday they'll figure out a cause and a cure for CHDs, but until then, we have to do our part. Please, tell someone about congenital heart defects. You can share the facts, you can share Derrick's story, you can tell a pregnant mama to make sure she doesn't leave the hospital with her new baby before they do a pulse ox check on him. You can get involved with Hope for BraveHEARTS and help us raise money for CHD research (and BraveHEART Baskets!!).
It just so happens that Saturday, February 8th is our annual pancake breakfast! It's a super easy way to help us raise money. If you're local, grab your friends and family and come eat pancakes for a great cause.
(And meet X-Factor's Carlos Guevara!!)
If you're not local but want to donate, you can visit www.hopeforbravehearts.org and donate through paypal or mail a check to HBH PO Box 2924, Irmo, SC 29063. If you want to do a fundraiser somewhere else, or collect items for the baskets or help us with the next fundraiser....WE WANT YOUR HELP! We'll beg for it. Email me!
It still makes me weak in the knees to think about my baby like this:
CHDs stink. They stink for everyone involved. Jenny Kate just saw these pictures and said, "Is dat Bubba? I don't like my Bubba like dat. Get dat off him." They affect everyone, even the little people who you think don't have a clue.
A minute (or a meal :) is all it takes to share a story, to raise awareness. It could save a life. I can bet you anything you don't have to look far to find someone with a special heart. And if you can't find anyone right now give it some time...because you will. These sweet heart babies are everywhere and they need your voice. We all do!!
Happy heart month!