So much to do!!! I have been feverishly trying to get my "ducks in a row" now for weeks, even months.... It seems like every day there are phone calls, appointments, activities, etc, and never a dull moment to top it off!
I am anxiously anticipating what the future holds, but have made some new friends along the way. I attended my first support group meeting this week for parents of CHD kids. Mended Little Hearts is the group. I think it will be a tremendous support for me and my family. I met several other mothers who have already gone down the road of surgery....set backs....progress....and all the various roller coaster of emotions that come with having a "heart child".
It is interesting to me....all the parents I have met are just like me. Normal, hard-working, every-day average citizens. You wouldn't look at us and think we have children that have such serious issues with their hearts. We are parents that want the best for their child(ren). We are moms who did all the right things while we were pregnant. We didn't choose this. But we are fighters and will do whatever it takes to give our kids the best treatment and advocate to make their lives better. I have a renewed spirit and am going to try to raise awareness and do my part to help other families who have a child with a Congenital Heart Defect.
My first opportunity to raise awareness is coming up this weekend. I have been so-so training to run a half-marathon for some time now, and will be completing my first one on Sunday. I am going to wear the shirt from Mended Little Hearts so other runners will see it. This is going to be my new "cause". Every running event I take part in, I am going to wear something relating to CHD. My boy didn't choose to have a bad heart; I can make my heart healthier each time I exercise, so I am dedicating this first long run to my Nicholas.
Did you know that 1 in 100 babies in the U.S. are born with a congenital heart defect? CHD's are the leading cause of infant death, and the #1 birth defect of live infants. The cause of most congenital heart defects are unknown, yet funding for research vastly lags behind childhood cancer and other genetic diseases.
Has your child been diagnosed with l-tga? I would love to talk with you. Please enjoy my blog and email me if you would like to join a network of parents of children with l-tga and other CHD's.
Has your child been diagnosed with l-tga? I would love to talk with you. Please enjoy my blog and email me if you would like to join a network of parents of children with l-tga and other CHD's.
It was great to meet you at our meeting Brenna! Good luck with your run this weekend, I know you'll do great. And it's great that you'll be wearing your MLH t-shirt. :)
ReplyDeleteAs you get closer to surgery, remember we are only a phone call or email away.
Andrea Himmelberger
MLH of Sacramento