Finding understanding

Since the beginning of this journey my husband and I have been struggling to find understanding in this whole thing. Questions dance in our heads daily, and even still now. 

Did I do something to make this happen?
Why us?
How will we make it through this?
Will we have to bury our son?And at what age?

The world has seemed to be against us from the beginning. With ugly statistics and stories of heart ache from other families we've grown close to. 

I have seen first hand the heartache of those I have let in when a child was taken to early. And as a heart mom my heart has broken too. It hits to close to home. One day they are fine, your loving on them and they are smiling and the world seems right. Then the next day rock bottom smacks you in the face. They can fade so quickly. It leaves a permanent hole in the lives affected, and not a hole made from a heart defect. This hole will never be mended like the trials of "fixing" our lil heart warriors. But like them we have to learn to keep going and re-route our lives with what heart we have. 

True understanding of a CHD will never be there. We can find statistics, find surgical temporary remedies. But to truly understand CHD and how a mother or father of a child copes with CHD will never be there. There is no book on how things can pan out. There is no "What to expect when..." we just have to go with what we are handed, and let me tell you its a crappy hand! And for others to add in their input on how "they" are feeling through this and how much its affecting "them" adds insult to injury to us. We love our families, all heart families do. But no one can fathom the ache your body feels for your lil one. You can sympathize, have empathy etc. You can try and place yourself in our shoes, but our shoes are to big to fill. Our fears will never get to subside. We dont get to feel bad then go on with our daily "normal" lives like others. We don't get to chose to step away from this. We are forever in this whirlwind of our "normal" that only those in our community, the heart community or heartland as we call it, will understand. I know for some families that hurts. You use to be the one that we went to to talk to about our daily struggles. But when we got the diagnosis of "your child will have a hard life and need much care" changed our lives. And because you don't understand it's sometimes hard for us to talk about our struggle. I will say that you should be happy for us though, because through all of the struggle we endure, there are others out there who have been there, who can offer advice, a shoulder and they all understand what we have went through because they have been there too. Its not that we love you less because you haven't lived this life or fully understand it, hell we don't even understand it all. We love you the same as always its just harder for us to speak out to you about our struggles now. And honestly you never will. That's one reason for this blog. To help others who aren't living this life can better understand what CHD families go through on a daily basis. 

We know that you feel for us, that you to hurt because of what your neice,nephew, grandchild is going through. And you feel for your child who is a parent of a CHD child. 

I read a book recently written by a mother of a child with HRHS, the opposite of HLHS, were the right side doesnt form. It's one of the only books from a parents perspective on life wtih CHD. I read one of the last pages that I and many other heart families agree greatly with. 
There is a section for family members or friends reading the book that states how you should approach a heart family and their struggle, how you can help in their time of need and things NOT to say. It reads as this:

The only big no-no that cannot be excused is a foot in mouth, or misplaced concern is this:

Unless she is the mother of your child, or your own mother, never, ever,ever tell a mother of a child who is near to death how hard this is emotionally on you. You don't get to do that, I forbid it. No matter how hard it is for you to see a child like that, unless it's your child, zip it, lock it, and put it in your pocket. We'll forgive you for just about anything else.  

From amanda rose adams book heart warriors - a family faces congenital heart disease.

This is not to hurt peoples feelings, but to shed light on how we feel on this matter. We appreciate that you care, many people don't and we have lost people along the way on this journey because of it. We don't want to seem mean or hateful, but we don't have the time to feel bad for others because of them feeling bad for our situation. I know sounds horrible. But we are, and it seems this way, selfishly consumed in our own feelings through this. Feelings of fear, doubt, heart ache, anger. We are having a hard enough time keeping our selves together through this so we can raise a child with a life threatening defect. So we unfortunately don't have the time or means to feel badly for others feeling badly. All of our energy is spent holding our heads up and keeping strength in the face of CHD, in the face of our child and what their life may hold. In the end of the day we don't have energy for anything else. So we ask that you just be there for us, love us, love our children. Help us in this fight so other families don't have to face this. I know its hard to ask that after telling you how selfish we are. But out of everything this is ALL we ask for.