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February 10, 2014

Give a Little Love for Congenital Heart Defects (CHDs)

While for many people Feb. 10 marks a few days left to plan a special romantic surprise, an intimate dinner date or even make plans for a child's classroom Valentine's Day party. For me it means it's Congenital Heart Defect Awareness Week. 

I couldn't believe I had almost forgotten a special week that for the last five years had meant so much to me, the mother of a child with a Congenital Heart Defect.

It was only a few years ago that I was in the hospital for my coiling my son's shunt. 

It was only a few years ago I was a new mom who needed to talk to others about CHD and began a blog

It was only a few years ago I was "living" at the hospital waiting for every moment I could have a chance to see my son take a breath and wonder if it was his last one.

It was only a few years ago I was a pregnant first-time mom who had no idea what would soon change my life (and my soon-to-be-born son's life) forever. 

The difference a few year will make. 

As I've documented our journey throughout the years, I often get asked from friends and followers, "Jackson is ok now, right?" 

And for the most part he is - for now.

Thankfully, his body and his incredible heart team have kept him a mostly healthy five-year-old boy. While I have little to restrict him from or to keep my eye out for at this time, I do have reminders that he's special like the 1 out of 8 children that are born with CHD every year. 

For instance: 

When we go to the dentist, he can't just have a cavity filled without approval from his pediatric cardiologist and a special antibiotic. 

When his friends sign up for football or soccer, he can be a participant now, but he'll have to be restricted due to the impact it can cause his heart. 

When I think in only 10 years, he'll once again face another procedure to keep his heart workingand he can continue to touch lives the way he continues to touch mine every day. 

Unfortunately, this is not always the case with children affected by CHDs. As parents of children with CHDs, it is our responsibility to share our childrens' stories in hopes that it will touch someone's life - either to give them hope, to give them strength or most of all, to give them awareness to a condition that affects 40,000 births a year.

So this year while we sit on the heels of Jackson's annual appointment; at the same hospital I learned of his CHD, I ask not that you feel pity or sadness, but that you realize that the best way to help Jackson is to make yourself and the others around you aware of what is a congenital heart defect. 

To check out the #RockYourScar Contest with photos of other CHD kiddos showing their "battle scars," check it out here.

To learn more about Jackson's Journey, view his photos here.

To see Jackson's story on Fox Good Day, watch it here.

To learn more about CHD Awareness, visit:

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