It is hard to believe that Addison has almost been gone for 6 weeks. I keep thinking about what my life would be like if things had turned out differently, and I actually was holding one of God's miracles. I know that everything happens for a reason and that I am special to have been given such a gift. I just wish that I was able to keep it for longer than 22 days. I know that I have never really lost her; she is with me all the time, and I see her in every beautiful flower and every child's laugh. She opened up a world of joy that I never knew was available. I miss her every moment of every day but know that she is in a better place, and one day I will get to hold her for eternity.
I would never change the fact that Addison had CDH. My life has changed for the better because of it. I now know who my true friends are and my family has grown exponentially. I have found out things about myself and Jason that I may have never had a reason to explore. God has shown himself to me in a way that I had never known was possible.
I am not mad or angry at God for taking my little girl back to heaven. I just want to make sure that her memory lives on through my actions and the actions of the other lives that she touched. I want to make sure that I let everyone know about her defect and how it affected my life and is continuing to affect 1 out of every 2500 pregnant women's lives. I want to protect other families from losing children to this defect. It seems like in the last 100 years the doctors would have at least pinpointed what causes this defect or a better treatment regimen to save the lives of these little innocent children. I think that we all need to unify for the one common cause of raising awareness for CDH and raising enough money to really make a difference in research. Every family that has been touched by this defect feels the same pain whether from the loss of a child or the long and ever extending road to wellness for the survivors.
Cardiologist... what is normal?
1 week ago