Our lives as of late - well really since Miss Olivia made her debut have been turned topsy turvy, but I wouldn't have it any other way. Yes, we have had our share of scares and worries, but Olivia is doing well even though she continues to battle post-Glenn headaches. I am convinced that she has probably reached an all time decibel record in the last week, but I don't mind. Brian and I have had disappointments when there are friends and family that just don't quite understand what our new normal entails, but it's so trivial.
The link that I have here is from another heart mom whose son lost his battle with HLHS shortly after the Norwood. Both her and her husband have been so eloquent and open with their sadness and joy in the fact that their son has peace, but very clearly acknowlege that there is something missing from their everday life here on earth now that Luke is no longer physically with them.
When I read these posts from parents who have lost their little ones or of parents who children are truly suffering it always reminds me to count my blessings. We have so much family and friends (who are close enough to be considered family) and a whole other family that we've found within the heart community. No matter how our parents and siblings may try to understand what we're saying - these heart families get it without an additional explanation needed. We give each other suggestions and encouragement in times of need and marvel at all the strides that our heart babies/kids make.
One of Olivia's newest heart buddies,Jonah, is getting ready to go to the 2nd floor today and they're talking discharge tomorrow! That is less than 3 weeks after his Norwood which is just fanstastic. We actually met his parents the day of Olivia's Glenn while we were in the waiting room and lo & behold they knew who we were from this very blog. I had a very emotional moment with Stacie as she said that reading our blog helped them look foward to the impending birth of Jonah. That moment will be forever imprinted in my mind and heart. My love for Olivia that I try to channel into my entries was able to help bring comfort to another couple about to face the same challenges as we have been facing and those families before us. Not only was that such a blessing for me but even moreso as a family that we were able to making a positive lasting imprint on another.
So as my sweet baby may wail away at home today while I'm at the office and stress Brian out...I am blessed to have a wonderful husband, a healthy baby girl and lots of love to and from them both.