Can't sleep

I'm laying here listening to my son sleeping knowing how beru lucky we are he is here alive and well. If we had him say thirty years earlier would he have survived his first year? I'm not sure. If the ultrasound technician hadn't second guessed the twenty week ultrasound I'm not sure I can say we would be in the good position that we were in. His story had the potential to end much differently.

Four heart babies have died this week. I... It kills me to think about this. They never made it to the first birthday most of their short lives was spent in the hospital. It just isn't fair. But who said life was fair? Because it's not. This year has shown me over and over that life simply is not fair and it is not always easy.

I mean let's look at this way Ausen is alive partially due to the Loss of another family. During his open heart surgery his heart was stopped and a piece of his tiny aorta was removed and replaced with the  tissue of a donor. Somewhere out there is a family who I owe a debt to one that I feel can never fully be repaid. I know I  am rambling  right now it's late and a just ache for the families who have dealt with a lose I can not fathom. My boys are my life and all I can say is thank you, thank you for donating. I will do the only thing I can think if to pay it forward be a donor myself.

I wish more people saw how the world I have been thrown into can be. I am and always shall be a heart mom it has changed me in ways I did not know where possible i and my husband find ourselves when talking about heart kids as just saying our kids. How frustrated we have been in the lack of funds for research . People have asked me what caused Aiden's heart defects simply put we have no idea most of the families who have children with heart defects do not know . It just happens and without proper funding and research we may never fully understand.