New Year, New Leaf
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.
February 6th, 2009 at 10:15 am
I find that I have a similar ambivalence about wanting privacy and wanting to be honest and open in the “blogosphere”. There are some boundaries I won’t cross in blogging, but I share pretty openly otherwise. I do this mainly because that openness and honesty are what I appreciate in other people, which is why I am so glad you share your triumphs and struggles. Even if you decide to quit blogging at some point, all that you have written here remains a story, a testimony, to someone else who may stumble across your words in a search for other families who live with and grow through challenges that seem too daunting to think about at first. I think that’s a wonderful gift, and aside from caring about your welfare as people I have the privilege to know, I think that this blog is a gift you give the world at large… and who better to honor in the process, than the family who inspire it?
February 6th, 2009 at 9:50 pm
I hadn’t checked in on Justin in awhile and was pleasantly surprised when I checked and saw you had updated. I’m glad my blog helped you to see that these kids are growing, laughing, loving and families adapt - as your family has. I have told you before how much I love your writing - so I do hope you keep writing. As you mentioned, new families starting out on this journey want the day to day details - there’s enough heartbreak to go around - it helps when there are blogs that give the other mundane details of life moving forward.
Hope to see another post when I check back in
Dina
February 8th, 2009 at 12:47 pm
Your blog was one I found while searching for more information after a prenatal heterotaxy diagnosis. I read the whole thing from beginning to end in a day.
I wanted to thank you for putting yourself, your family, and your experience out there. Your blog absolutely did fill something that was missing in what I found online — what day to day life was like. And it gave me a great deal of hope that there would still be joy and good days despite the medical issues, possible complications, and fears and concern for a sick child.
I honestly can’t thank you enough for how your blog helped me cope and prepare mentally (Still not due until April). I’m seriously considering starting my own blog, on the chance that maybe I could help someone too.