The 2nd Hardest Thing

Everyday, at some point in the day, I go through all the questions and scenarios and "what if's" that we had the last two weeks of Edison's hospital stay.  I replay the discussions we had with the doctors and pleadings with God to help us know the right thing to do - to make it clear to us.  The answers did become clear, but I still go over it everyday.  It sucks to relive those things in my memory everyday; to requestion every detail everyday.

Do you know what the 2nd hardest thing is about bringing your baby home knowing he is going to die and there is absolutely nothing you or anyone else can do about it?  It is people questioning you as if we didn't think about or exhaust every realistic possibility.

Really people?  The hardest things I've ever done is accepting Edison is going to die and you are me questioning about it?

Sure, they are trying to help.  Sure, they are trying to solve the problem.  You know how you can help?

Kind words.

Support.

Prayers.

A freezer meal.



Support groups absolutely suck at this by the way.  They all have the answers...but won't answer the one question you actually ask.  Everyone's answer is "Call Boston!", "Call Stafford!", "Call CHOP!", and my personal favorite "Did you get a 2nd opinion?"

Please, by all means, if your child has a real chance of surviving, then do those things.  But sometimes it's not about the biggest and the best hospital.  Sometimes it comes down to the quality of life for a child.  I (and our doctors) haven't found a single successful case for a child with HLHS and BA.  And that doesn't even include a child, like Edison, who has severe heterotaxy and a very complicated vascular system.  Sometimes it's not about doing the risky surgery that only has a 10% chance of working.  Sometimes it's about letting your child pass away in loving arms and giving them some dignity.  Sometimes it's about not making them suffer anymore.  Sometimes it's about not letting their little bodies go through more trauma than it has already endured.  Sometimes it's about giving your child the best and most loving life that is possible even when it means that you will walk around for the rest of your life with a broken heart.

It's not easy.  Don't question it.  They thought about everything.  Please, just don't.