Sweet Little Cora

I am honored to be have Kristine as my guest blogger today. I met this mama on twitter, in the midst of her tragedy. I was drawn to her because we share a story and because of her desire to help other families never experience a similar tragedy. Kristine has inspired myself and countless others to speak up (more) about Congenital Heart Defects (Disease) and spread awareness. Even though our stories aren't the same and we have never met, we share a loss. Meet Cora and her amazing mama.




I don’t want congenital heart disease awareness week to end. Cora’s Story.

The official Congenital Heart Disease Awareness Week ended yesterday. But, for me, every week is congenital heart disease awareness week.

My daughter Cora died of an undiagnosed and as of right now, unspecified, CHD at five days old.

Every day is Cora’s Day.

I work for her constantly.

Every week is a time to spread awareness.

Every month, I want to tell as many people as possible.

I didn’t know about congenital heart disease until after Cora was already dead. Since, I learned it’s the most common birth affect. Kills the most babies. Kills more babies than all forms of childhood cancer combined. So, I keep working for Cora and for all the little ones who lost their fight with congenital heart disease.

Cora and I hope to educate all mothers and fathers so less of these little one’s lose their fight. Valerie here at MamaLovelock has been working so hard for much longer than us to spread CHD awareness. We’re new to this battle, but lucky to have connected to so many mothers and fathers just as passionate as we are.

My biggest hope is one day there won’t be a need for a CHD Awareness week. But, for now the need is great.

No cure for congenital heart diseases currently exists. All that can be done are fixes to help as much as possible.

As Cora’s Story proves, not all congenital heart diseases are detected until it’s too late. More research is needed to find a way to pick up most, or all of these defects. Awareness helps fund research by gathering public support.

Until a sure fire test or screening method comes into place, arm new moms and dads should read the warning signs that their baby might be one of the one in 100 with a CHD and ask for a pulse oximetry test to pick up serious defects at between 24 to 48 hours. And, above all else, spend time reading about these heartbreaking conditions.

Kristine Brite McCormick writes about Cora (almost) daily on her blog, http://www.corasstory.org. If not on her blog, she can be found on Twitter, @kristinebrite or Cora’s Facebook Fan page telling Cora’s Story. Follow Kristine for more information about congenital heart disease or to learn more about the acts of compassion and kindness Cora has inspired.

{Today's post is in pink, for Cora}

"Chicken and Mac-e Cheese"

I am not sure of what to write today, so you all are getting a post off the cuff. This is it, as it rolls out of my brain.

This week is Congenital Heart Disease Awareness Week. Statistics say that 81 babies everyday in the United States are born with CHD. Some parents, like my Hubs and I, know in advance at least some of the problems before the baby is born and other parents are not as fortunate and are completely caught off guard. CHD, if undiagnosed can cause heart failure suddenly and is one of the leading causes in juvenile sporting event deaths. My precious Nathaniel is a CHD statistic. He is the reason I walk in the Heart Walk. He is the reason I spend all of February focusing on heart month. He is the reason I take candy up to the nurses on the heart floor at Children's Hospital once a year. This year I made broaches for myself, my mom and a twitter friend. I am also making pins for the people that will be walking with me in the heart walk. Awareness of CHD WILL save lives.

I guess, because I have been doing a lot of talking about Nathaniel in the last few days my emotions are just a little exposed, more so than usual. Yesterday in church they sang a beautiful song. I love the song, but it was one of the songs they sang at Nathaniel's funeral. I bawled and bawled. It took me straight back to his funeral, it was as if I was there, all over again. Don't get me wrong I have relived his death and funeral many times, but last night as I sat there listening and crying I did what I normally do~I recall the last thing he ever said to me. Remembering, hearing his little voice in my head always brought me comfort. His voice is fading. It's getting harder to remember what he sounded like. It was hard for me to recall last night, it took longer to remember (which probably accounted for a lot of those tears). I don't like that. I don't want to forget what he sounded like. In the first few weeks after his death I would wake up startled because I thought I heard him calling for me and now I am having a hard time remembering his voice. Last night was the first time in awhile I tried to recall his voice and it upset me when I had a hard time remembering.

So when I went to bed last night I prayed. I prayed for peace. I was really struggling. I told God that I didn't want to forget. I went to sleep and I dreamed of Nathaniel. Sweet happy dreams. I could hear him singing, playing, laughing and saying mama. I needed that.

I miss my baby boy. I will always miss him. I will have a few days now and again where my grief is raw and real. But the days that I think of him and smile now far outnumber painful days. Though grief is real and hard and overwhelming at times, eventually it gets better and you find yourself surviving, just surviving, your loss. Then over time you realize that you aren't just surviving, you are thriving despite the loss and moving forward.

Today's heart tip is simply to hug someone, an extra long I am so glad you are in my life and what would I do without you, hug. Its amazing what a hug will do for you and the one you are hugging.


*Chicken and Mac-e cheese was the last thing Nathaniel ever said to me, besides calling for mama.