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From: dsarno on 22 Oct 2007 19:10
I am a parent of a heart patient. My daughter was diagnosed with a
VSD and a Hemi-truncus and was operated on at 6 days old. Her first
surgery was open heart surgery and at 6 month's old she had
cathederization to open her artery using stents. My daughter is very
lucky. She survived, is healthy and is completely normal. We are
very lucky to have her.

I know that not all cases turn out this way. I know people leave the
hospital without their son or daughter. I know that life is not the
same after loosing a child. I can say this because my parents lost a
child to heart defects. I was the replacement child. I know that
people grieve and are never the same. Yet, they go on. They have
more children, and are happy. They never stop missing the child they
lost and they never forget them. But they go on and do their best.

When I was in the hospital with my daughter, a part of me felt like
she did die. I prepared myself for her death because I knew first
hand that children die. I am living proof. I was surrounded by other
parents whose children were definitely worse off. From the outside,
they looked stronger than I felt. I had bad days and good days and
numb days. It was by far the hardest two weeks of my life. The
following six months were by far the hardest six months of my life.

I don't know how you are feeling. I know everyone feels differently.
I know some people are stronger and some are weaker. When I went to
train to be a supportive parent, the psychologists said, "don't assume
you know how people are feeling. Just listen, and talk about what you
went through."

But I feel as though I can speak to almost anyone whose child has a
heart defect. I say this because I have an unusual circumstance. I
lived with two people who lost a child as a result of a heart defect.
They had my brother for 4 years before he died. I know how my older
sister was affected. I know how I was affected, even having never
known him. I know what it is like to get shocking news about a
child. I know what it is like to have to wait to see the results of
surgery. I know what it is like to have a scare after being told
everything is resolved. I know what it is like to have a strain on a
good marriage that is so severe, you aren't sure the two of you are
going to make it. I know what it is like to feel fear for your
spouse's physical and mental health. I know what it feels like to
worry for your own health.

But I also know what it is to be thankful. I know what it is to
realize that good things can result from very bad events. I know that
life goes on after having a really sick child. I know what it is like
for things to be going so well that you forget how lucky you are. And
I know what it is like to have something, a dream or a smell, remind
you of what you almost lost. I know what it is like to watch your two
children play together and realize that the older child is as lucky as
you are. And of course, I know what it is like to worry that you'll
treat your children differently because of what happened.

What I want to say to you is this. You are a person. That is all you
are. You can't do any more or any less than what you can do given
what is being thrown at you. You'll make mistakes. You'll say things
you don't mean. You'll hate yourself, and others, and the world.
You'll feel hopeless and you'll keep moving forward. You'll feel
helpless and out of control.

I think the most important thing is that you keep connecting to people
who care about you. If you don't have people like that, you find
someone that will hold you up or keep their distance. You find
exactly what you need and you get a little selfish. You are
definitely going through a terrible thing. The kind of think that
breaks the strongest people in two.

I won't lie and say you're going to be yourself again. There is just
no way. Even if you had a perfectly healthy child, you wouldn't be
the person you were, anyway. I just want you to take some comfort in
the fact that people do go on. They loose children and they go on.
They keep children, and they go on. And sometimes, they break. And
their lives break. I won't lie to you. Sometimes it happens, but it
really isn't your fault. The reality is, when this sort of thing hits
you, you just can't control it. And that is probably the greatest
lesson I ever learned. You cannot control everything in your life,
and you need to accept it. You just keep doing your best and maybe
you'll be happy again. Whatever makes you happy, even for a moment;
maybe that is all you can strive for. But it is something, and you
should know that life goes on.

And don't forget that if you win the lottery of life - and you get to
take home a child - you are the luckiest person on the face of this
earth. Even when my brother was sick, my parents always loved him
with everything they had. They were lucky to have had him even for
the short time they did. I know this because they showed me how much
they loved him through how they treated me. They did everything they
could to make him happy and comfort him. When they lost him, they
picked themselves up and started again. So take some comfort in
knowing that you can win, even if you lose. Just don't give up and be
the best you can every day.

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