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Read e-book MY HEART WARRIOR: Living With HLHS Through A Fathers Eyes
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With an official diagnosis in hand, the shock sets in. This is when the dreams start to crumble. What kind of life will he have?
Even as I type this, tears are in my eyes just remembering what it was like. It seems silly, but for me that was almost harder. Maybe it has something to do with saying it out loud that makes it feel more real. There are other jokes too. We have to rebuild our hopes and dreams. We have to find our way back to being able to imagine a life for them that is not very different from that of our other kids. We need to recognize that the trauma is real and a valid part of our stories.
There will be lasting effects from the surgeries and there will come a day when they realize that they are different, but why start them out with it? Why share your trauma with them too? Yes, they will have trauma, it will come in stages as they realize what their CHD diagnosis will mean at different points throughout their life.
Yes, they do have to be more careful with some things, like sibling rough housing. They have more doctor appointments. They have to be more cautious about germs. They have to learn to stop and rest more often. They will get cold in water due to bad circulation. It is only one part of their self definition.
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