posted on Jul, 25 2017 @ 03:29 PM
a reply to: Cymru
It is amazing to hang out in children's hospital units. We parents have "that look" - sleep deprived, somewhat disheveled and a hint of deer-eyed
trauma about the eyes, and a grim set of determination to the mouth. It's either that or overt relief (good days) or devastation (the worst days).
It's all about endurance.
You did a good thing talking to that poor Mom. It does give hope to hear how other's can make it through. I've done that myself, and it feels
My boy is on the list but holding steady on meds for now. It will be a while before they call him, so we are concentrating on living life as fully as
he is able to right now. We've been trapped at home, or within a 2 hour radius of the hospital, for a year and a half, and his most recent test
showed a bit of stability I wasn't expecting, and the Docs said he was able to travel some. We're going to go visit his grandad in another state.
I'm very excited about that. My dad is too old to travel now, so we never know how much time we'll have with him.
So we are in a temporary "good spot" with the inevitable hanging like a shadow in the background. I would give anything to have some kind of true
universal health care. If we lose insurance, he will no longer be able to be on the transplant list. There will be no call when he needs it. It
will also be extremely difficult to just do the meds he needs, as well as general care. I am wondering if some other kind and generous country might
take us in if it comes to that, but its a lot to ask, no?
I'm so sad about even having to think in those terms.
Blessings to you, and to your girl. Sending thoughts and prayers across the sea...
edit on 25-7-2017 by AboveBoard because: (no reason given)