Patrick
Our son Patrick Praj Mullarky was born on March 6, 2009, and died on March 19, 2009. We only had him 13 days, and barely had any opportunity to hold him or get to know him. Like you, we were away when he coded: more than 20 hours had passed since his Norwood, he appeared to be recovering fine, and we needed to sleep in a real bed if we were going to be there for him as he woke up. They managed to get him onto an ECMO machine after an hour of CPR, but he never woke up again - the damage was just too great. After a few days we were able to hold him one last time as we asked the doctors to turn off the life support.
It was the hardest day of our lives.
But one thing made a huge difference. My wife and I made a promise to each other that we would dwell on the good that came from our time with Pat. There was a lot to feel bad, cheated, and angry about - but if we spent all our time thinking about that, it would come to color how we remembered our little boy. How we remember things is a choice, and we chose to focus on the best parts of Pat's time with us. When we started thinking of how unfair it was we had so little time with him, we would start to think about how lucky we were to have met him at all. When we started to feel jealous of other HLHS parents who still had their children, we would think about how much difficulty, fear, and heartache they faced every day - and while we would have gladly faced that, it was a decision we weren't allowed to make. Pat came, said hello, gave the surgery thing a try and decided it wasn't for him, and left for a better place.
Before he was conceived, my sister-in-law had a dream that her dead father was walking down a beach hand-in-hand with a little boy. Now we like to think that he has gone back to visit his grandfather and tell him of his adventures down here with us.
It has been only 3 1/2 months since our son died. At first it seemed like all the color had been sucked out of the world. But little by little over time it has started to come back. We remember him every day, and as time goes by we remember more of the good and less of the bad. We had a beautiful boy and we loved him with all our hearts while he was here. We learned so much about ourselves, those who care for us, those who care period, and all the amazing people who did everything they could to help us before, during, and after Pat's short visit. While our hearts still ache with loss we can feel that ache beginning to fade, to be replaced with a feeling of peace.
It was a difficult time - it still is - but we would not trade it away for anything. We were blessed with a beautiful baby boy, and we cherish the memory of every minute we had with him.
Rob Mullarky