When a child has a life threatening problem:

1. Never tell us that we are doing *it* wrong.  *It* is unbearable and we are doing the best there is to do.  Honest.  If you would do things differently that is fine.  But don't tell us.  This is not your job or burden to bear and we DO have to do it and you don't.


2. Let us cry.  We are so sorry that it makes you uncomfortable, but it is a fact of our life now.  It does not mean we have given up hope.  It means that this is scary and hard and we are facing the possibility or probability of death.


3. Help us.  We are in over our heads and need help with basic life.  Cook a meal or do our laundry.  


4.Please be sensitive to the fact that we have a lot of stress to deal with.  We may not be cheerful all the time.  We may eat too much or not enough.   We might not feel social all the time. 


5. Please don't ask us to not face the facts of the situation.  It is not wrong for us to grieve the life that didn't happen or the loss of our dreams.


6. Sit with us.  Just sit sometimes.  Be here when we need someone to talk to.


7. We know that this is not a short term problem.  If you want to be a friend then dig in with us and stick around.  Don't get bored when it seems to go on and on.  This is our life now and we have been abandoned by a lot of people already. 


8. Remember that while miracles can happen and we do believe that, it is not a reflection of our faith if God chooses not to heal this particular child.


9. Please recognize that this whole situation makes you scared and uncomfortable and don't let it cause you to avoid us.


10. Please remember our families too.  This is really hard.


Thanks.