Coming to terms

I hate to be all over the place with this blog but I’m trying to play catch-up to May 2, 2011.  I still have a good three months or so of history to go through before I get there.

That being said – It came time for my wife and I to come to terms with Jacob’s condition and all of the possible outcomes.  This was the first rough patch for me.  I didn’t know how to feel.  We had the joy of knowing we were having twins, a boy and a girl, offset by the disastrous news of the hypoplastic left heart.  All of my emotions were mixed about and I did not know how I was supposed to feel.  How is one “supposed” to feel when something like this happens?  I still don’t know.  I don’t think the experts know either.  I was torn by a mixture of pity and guilt.  Was it something I did?  Was it preventable?  How would the other children treat him because he would be weaker and smaller than normal?  How am I going to cope with raising a special needs child?  Am I special enough to raise such a child?  Would he be born with brain damage from the lack of oxygen?  Will my marriage survive?

To further complicate my emotional state, I found myself thinking dark thoughts.  What if he died shortly after birth?  Would it be so bad?  Wouldn’t it be better to lose him soon after birth than to lose him after I got to know him and see him develop?  Do I try to get to know him or do I keep my distance after he is born?  Am I just being selfish and thinking about myself?  These questions may seem easy to answer but they are not.  Not when the outcome affects you this personally.

I watch my older son and wonder:

He is almost 5 years old.  This is the age when Jacob is due to have his third major surgery – the Fontan procedure.  It is an extensive open-heart procedure to help palliate the hypoplastic left heart.  How will I fare seeing my son at this age in such pain after the surgery or even deal with his death if something goes horribly wrong?  Will I be strong enough to deal with the pain of losing a child?  Is anyone really strong enough?

I don’t know if it was the constant exposure to the problems of HLHS or divine intervention but Christina and I have coped rather well with all of the possibilities we have foreseen and some we hadn’t.  I guess we all find a way to cope.