Dear CHD, I Hate You.

"I hate you CHD."  There, I said it.    

CHD has taken more from me than I cared to give.  Naturally, I think you can understand.

Three letters, when I see them I can't help but feel resentment and digsust.  It's been 5 years and yes, I'm still bitter.  CHD is the reason my little girl is no longer here.  It's the reason that we as a family have Sunday cemetery visits, family photos that include a framed picture of a missing little girl and an annual Birthday party without a guest of honor.  I may always be a pissed off mom when it comes to CHD.  The highs and lows that the past 5 years have brought have been nothing short of unpredictable, trying and yet at moments filled with pure and utter JOY.  I know the joy part might throw you off but I have to explain so you don't think that I've absolutely lost it.

CHD has taken one of THE most important things from me that could ever be taken.  My child.  When you have to bury your child what follows is a total living nightmare.  I really can't explain it to you but if you've ever had the unfortunate experience yourself then you understand.  It's like time stands still, Heaven and Hell collide and you're stuck in this place where Faith and Fury completely fight for control of your heart and soul.  You're sad, looking for answers, angry, desperate for relief from the ache in your heart and confused as to why God could do this to you.  You question your Faith, your reason to live and then in the midst of it all it's like you go completely numb because your mind and body can't continue handling the waves of grief it has been receiving. 

5 years in, I can tell you you will always miss your child and sometimes all of those feelings from the day they left, they come rushing back.  Let them.  You will be able to breathe again, you will be able to smile again even if through tears.  Our children aren't meant to leave us first.  Time passes no matter how hard we will it not to and the feelings start to change and in my case, I had to funnel that anger and grief into something tangible that made me feel like I hadn't lost my little girl entirely.  I had to hang on to her.  (I promise, the JOY part is coming.)  And so I advocated.

As much as I hate CHD though (the JOY part comes in here) I owe my healing to it.  For 5 years I have prayed, cheered, cried, grieved, championed and advocated for some of the most brave, determined and courageous children I've ever known.  The heart community, truly saved me.  The one thing that nearly tore me and my family apart, brought me back to life.  While I am bitter that my baby isn't here, I am overjoyed when YOURS does well.  My heart is truly full to know these kiddos and to see the extraordinary things they are capable of.  I have been blessed to witness the true fight of a champion, of a WARRIOR!  I've cried when you've cried, I've been blessed enough to be in that waiting room and I have THE BEST friends I could ever have asked for.  These are the GIFTS that CHD has given to me.  While I'd trade them for one more minute with my daughter, I cherish these gifts because that trade, isn't possible.  I think my daughter knew I'd need it.  I see how tired all of you mom's are.  I know that you would all trade CHD away if you could, I know you would take your child's pain, endless procedures, pokes and prods.  I know the hospital stays are so hard on you and your family and I know that sometimes you feel completely alone, discouraged, frustrated and downright angry.  Don't give up.  CHD gets its butt kicked from mom's like you, like us and from kids like OURS.

Each year, February 7th - 14th we emphasize CHD Awareness.  Ok, the whole month of February.  We post fervently including facts, statistics, personal stories and our family struggles in the hopes that others will see the challenges CHD has presented for our children, for our family.  We hope that it moves them to be more "CHD aware" to know what to look for when they or someone they love is expecting or to donate towards research.  What people don't see because other than a scar it isn't visible to the eye is the HOPE heart mom's carry and the FIGHT these kids have inside them.  Rock That Scar.  Post.  Advocate.  Tell your child's story.  CHD has a group of determined heart mama's with some crazy strong kids in tow, so look out.  I won't stop raising awareness and not just during this special heart week.  I won't stop because my daughter deserves an advocate, she deserves her mom and CHD doesn't get to take that from me.