If it has been asked once it has been asked a hundred times.

We have watched and sometimes feel we are watching our baby slowly die before our eyes. How can I explain how we feel or what we need. I cannot and hope you never will have that understanding. Call it inspiration or ranting of a madman but there are these times I write to help myself more than to inform you, this is one of those times I need to inform you to help us.

• We do not want to be cheered up. Nothing you can do can fill that void right now.
• We appreciate a visit of support to help raise us up. Not everyone is capable of this as I’ve said before living the ICU experience is a nightmare very few have had and can fully relate to. We cannot relate to normal right now it is so far out of sight.
• I don’t know what we need. If you see it needs to be done, do it. An amazing group of friends near home cleaned our house for us the other day and did some laundry. We have been fiercely independent people all our lives and have only recently been able and willing to ask for help. So don’t expect the request just again if you see the need fill it.
• We cannot coordinate anything outside our immediate day-to-day needs. We have already been prompted by hospital staff to remember that self-care is as important as the care we can provide for Faith.
• We are going to be financially devastated however this turns out. Sue will not see another paycheck until September 2012. We have no reserves. So far people have been very kind, if you cannot help and I fully understand why people cannot. Do you know someone who can? Spread the word.
• Please don’t call just to find out if something is new.  We keep this blog for that purpose.  Every time the phone rings and we are away from Faith’s bed it could be the ICU calling to get us back for the worse.  Our hearts skip a beat with each phone call.  Not only that but it takes allot emotionally to retell the story over and over again.
• Anything else I didn’t think of.

If you know or work with our other wonderful children please do all you can to lift them up and support them as they need it. They are all such unique individuals who are each dealing with this in their own way. You need to remember that our “normal” is very different that what you might think when things are well. Help them as you can and ask over and over again what they need, it may be a lot less than you think. It’s just as hard not being there for them as it is being here for Faith.

And finally live by our motto “Plan for the worst and hope for the best” be ready to be there when we can’t pick ourselves up.