Happy New Year

Last day of 2013 and I want to remind myself of everything we have lived through this year, everything we have endured and more importantly all our amazing triumphs. It has been an incredible year. Living through interstage with Macsen so fragile - his mortality a constant newsfeed flickering across every moment in the first few months of the year. I can't think of that time without also thinking of how amazing our girls were - even when I felt I was falling apart, failing them,  barely hanging on to anything resembling "normal" with the weekly appointments to Dothan and Pensacola, the video appointments, constant record keeping - how much was he taking in, how often, how did his breathing look, how many grams did he gain today, how many lost?- and all they missed - birthday parties, kindergarten, playdates, friends- they never lost their love for me, or for him - our tiny little dictator.
In 2013 we made it through Macsen's second surgery which was so much harder for me then his first. It was easier to hand him over because after months of just trying to get him to his stage 2 surgery I was ready for him to be out of this perilous interstage period. But it was so much harder because I could see his pain, feel his unspoken questions, and for the first time I could see the fear he felt in anticipation of procedures, blood draws, xrays and just letting drs listen to his heart. And I had to help them. But he made it. An incredible moment and we were able to start a new normal - less appointments, more contact with the outside world. The girls started school and love it. We have gone camping. We have gone on a few fun filled family trips to a children's museum and the beach. I have started playing roller derby which has been an unexpected, yet sorely needed, place of respite for me and joy and awesome cardio. The children are all growing - every day an amazing gift with their quirky senses of humour, creativity, kindness and even their rage, indignation, normal selfish moments - I'll take them all. One thing I have learned from 2013 is the good moments are so much sweeter, so much better, so much more precious because of the bad ones we have lived through. Happy New Years everyone. May 2014 exceed all your hopes and dreams.