Home of the Four Trans

When I first started this blog, I could not find enough updated blogs out there that allowed me insight into the everyday lives of families that had children with congenital heart disease (CHD). This was 2007.

Part of the reason, I think, was because I did not search for “congenital heart disease blogs”, but for the particular condition that my son had, heterotaxy. I found only two blogs, Oliva’s and Riley’s. Both of these children have almost the same diagnosis at Justin’s. (Since then, I’ve found several more listed under the blogroll “Heterotaxy”.

Through these blogs, I found hope and fear. I found that yes, there was hope for Justin to live. I also found fear in seeing all that my child would have to suffer. These blogs updated little on the every day life, and I wanted to know more. I wanted to know how these children lived their lives, the worries their parents had, and how they coped with it.

The few other blogs I came across where just painstakingly sad. Many passed away. The websites/blogs went something like this: surgery was successful. no updates because he/she has been doing great. he/she passed away unexpectedly.

I left these sites wanting more. Yes, the child passed away, and this was sad. But, how was his or her life when she was alive? What greatness did he or she experience? How much did he or she love life? Did they play sports? And, how come these parents were able to feel so…at peace in spite of losing their child? How did they cope?

So, when Loi started this blog for me, I decided that I would show every face of our journey…uninhibited. I’d be truthful in my experience, and what I saw. I’d record my child’s happiness and his struggles. I hope that maybe I’d be able to help others (who do not have children with CHD) understand what it is like to.

Along the way, I lost momentum. Suddenly, I wanted our privacy back. I became afraid my voice, and what harm it could bring. (I’ve mentioned my fear of saying good things in fear of bad things happening).

As I fell off the face of the blogosphere, I started getting questions about Justin, and people telling me they check in every day to see how he’s doing.

Then, I realized, there are people rooting for Justin! And, I needed to keep this spirit alive. Reason #1 for keeping this blog alive.

It was not until after Justin’s first surgery did I start to search for “congenital heart defects blogs”. Finding one, Jillian Sommer’s, led me to a world of others. It is in this world that I find the inspiration to be a more dedicated person to not only my children and husband, but to the blogosphere and the cause.

There are days when I don’t want to try anything beyond the basics of living day to day. Then, I read about how Andrea is able to manage 2 children, one, Drew, with heart defects and immune issues, while co-heading the Sacramento’s Chapter of Hearts of Hope, visiting heart families in the hospital, and training for a marathon, among countless other things.

Or, about Megan, and how she’s able to balance work and caring for her Elijah with heart defects and respiratory issues.

Or, about Shannon, and her endless ideas of advocating for her Wren, and entertaining him at the same time with a different adventure or project every day.

Or, about Kim, and how she balances a freelance career, 2 girls, one, Sadie, who has heart defects, a Monstessori school on her residential property, and a recent bout of the H flu that landed her husband disillusioned in the hospital.

Check these blogs out. These people are…Well, I don’t know how they do it.

Striving to give back to the world what these women have given me: Reason #2 for keeping this blog alive.

Here’s to a new year with a new leaf. I hope you all enjoy. Thank you for checking in.