It one of those nights that I realize I need to step away from the heart community becasue many of the things I am reading is making my heart ache. Ache for the families and little warriors dealing with CHD. I feel myself so lucky with how well Aiden is doing and that his CHD wasn't nearly as bad as some others!
I wasn't given the option of comfort care. I recently read one mom chose this her baby's CHD was so bad that she would not live through her surgery so they opted not to have in and instead took her home to care for her and love her for her short time on this Earth.
Then there is little Matthew and Kylie. It seems, don't know the details that Matthew isn't doing well. he is been in the hospital for over a hundred days and his only hope to survive is a new heart, one that has not come. I can't imagine waiting for something like, waiting for another person's child to die in order for yours to live. Its..... unimaginable.
Don't mind me guys I just feel sad and yet a little ... guilty? That my Aiden is doing so well.
I'm a mom to two boys one of which was born with coarctation of the aorta a congenital heart defect. This is our story and trails in life.
2 comments:
I know exactly what you mean! I feel like I always have "survivor's guilt" because I am meeting all of these other families with children who's CHD's are so much more severe than Tanner's. It makes me feel guilty that I am happy that we didn't have to go through all that they are.
They have told me not to feel guilt, but that I am lucky.
I agree, but still feel guilty. lol
Love you sweet lady!
I agree the heart board is very (stressfull) right now.There is so much giong on but then there are also heart warriors that are celebrating years after surgery.I think sometimes I feel I have to just be a good support and just listen to all the moms talk.I know we have lost a few recently too and that is very sad too.I too understand you guilt feeling.You are a great mom.I think in big or small ways we have all been through out struggles others just have different struggles to what we have.
Post a Comment