Holy moly, is it already January?!? Yikes, where did the time go? Maybe it doesn't seem like January to me because we here in Minnesota have been experiencing more than a few unseasonably warm days. We're talking fifty-ish degrees-that's practically shorts weather!
And since it's almost mid-January, that means that ready or not, February is right around the corner. Why is February so important? Well, February 7th through the 14th is CHD (Congenital Heart Defect) Awareness Week. As many of you know, both of my daughters have had to battle the beast that is Dilated Cardiomyopathy. I have been launched full force into the heart world, and for awhile it was quite the struggle. I felt so overwhelmed, it was like I was being suffocated and couldn't find any relief.
All that has changed in the past year or so. I have found a group of wonderful and supportive heart friends. Not all of them are transplant parents. Not all of them are even Cardiomyopathy parents. Some of their children are no longer here on Earth. What bonds us all is the fact that we all have kids with hearts that are sick in some way. I don't know what I would do or where I would be without them. I like to say that being a part of this support group is the silver lining in the cloud that is living with heart defects. These men and women are the best group of friends I never wanted. And I say that with the most love my heart can hold.
So here I am, TWO children in, and what have I become? A no-holds-barred, not-easily-silenced, ruthless crusader for CHD awareness. It's my goal to help the world become as aware of CHDs as they are of breast cancer. I want the average Joe to be able to look at a blue and red awareness ribbon and say "Oh, yeah, that's for Congenital Heart Defects." I want to motivate people to look into their own hearts and decide to make a difference for a CHDer by donating money to pediatric research. I want people to be excited about giving blood. I want every child who has to have heart surgery to know that they are not alone, that it's ok to be afraid, and that they have SO many people out there to love and support them. I want every parent to have their babies get a pulse-ox test before they leave the hospital as a part of their newborn exam, and to have resources on hand and readily available to parents with a new diagnosis of a CHD.
Are these lofty goals? You bet. But does that mean I am going to stand on the sidelines and wait for someone else to do it for me? Not a chance.
I plan on shouting my message to the rooftops every single chance I get. And why shouldn't I? These ugly monsters called CHDs have taken far too many children already. Children I care about. Children I have held, loved, kissed, touched. Children of parents that mean the world to me. It almost took my Madi. Several times. Enough is enough!
So what's the plan? Well, besides being a big mouth about it (which I may be a bit too good at... oops..) there are several things in the works. Currently, a group of friends and I are trying to get our local TV stations, radio stations, and newspapers to feature stories about families that have dealt with CHD during awareness week. We are bombarding their emails and Facebook pages with the cold, hard facts about CHDs. (Like that they strike 1 in every 100 children born. That they are the number one cause of infant death. And so on and so on..) We will be assembling goody bags for the children in the CICU (Cardiac ICU) at Children's Hospital, and delivering them-along with a handmade blanket for each child-to the hospital during CHD week. We are holding our second blood drive in Madi's honor. We are putting together informational packets to pass out at schools.
I plan on featuring the stories of CHD warriors that are children of friends of mine every day during CHD week, so I hope you will remember to check back here during the month of February and get to know these miracles and angels. With education, we gain awareness. With awareness, we hope to gain funding for research. And with that, we hope to save more lives.
The thing is, our army can never be too big. Won't you join us in our fight? Every single person can make a difference. All you have to do is take that first step.
Donate blood. (Memorial Blood Centers) Donate money.( Lasting Imprint, The Children's Heart Foundation, Children's Cardiomyopathy Foundation, Congenital Heart Information Network, Children's Hospitals and Clinics of Minnesota) Donate time. Sign your organ donor card. Read up on CHDs and then pass along what you know. Knowledge is power. We CAN win this fight. We CAN and we WILL make the world know who we are. Who our children are.
For to know our children is to know the meaning of the word miracle.