(a poster and write up about Sofia and other CHD kiddos were on display at the Clinic this week. so awesome )
As a mom, I also can admit that I feel little sad and a little fearful at this time of year. Sad for parents who have lost their babies, and sad knowing I am all too close to it and I could put myself in that place, yet at the same time couldn't even imagine the grief. I think you cannot be a mom of a child with CHD and not feel at least a little bit of those emotions too. We don't know what the future brings and for planners like me, that can be scary. I have decided though that I am mostly happy during CHD week this year. In my mind, Sofia is a CHD success story. She is one of the lucky ones and we do not take that lightly. Sofia may have been born with a broken heart, but she is not broken. It hasn't broken us. She is happy, energetic, and so full of life. I once read that as a parent, you are only as happy as your sickest child. So I won't hesitate to happy and enjoy my girls!
Four years ago, I was just learning what congenital heart defects were, having a new 6 week old baby who had just had surgery 3 days before Christmas and had only been home for a few weeks. It was a surreal whirlwind, and that I am glad time has erased some of the details. We have come a long way in four years, and now are active in meeting and supporting other families with children with heart defects. At the time, I didn't think I would ever to get this point in my life. There is much to be celebrated in that.
CHD awareness to me is about sharing the stories of remarkable children (and adults!) who are literally modern miracles, and hoping that with increased awareness, that legislation will be passed (especially in Ohio where it's lacking) for newborn pulse oximetry screening. This would help diagnosis many children, including those with Sofia's type of defect, early.
In honor of CHD week and Valentine's Day tomorrow, here is my special sweetheart on her very first Valentine's Day.
And here are just a few more because I can't resist cute pictures
first tea party at friend's birthday party
love, love this one
