There is a charity called Beads of Courage that helped our family in a very interesting way:
We were told about it as we settled into hospital life.
For every poke, suck, and therapy there is a bead. At the end of our
first hospital visit (5 1/2 weeks, but who is counting) the nurses helped my son
and I look back over the treatment and fill in his Bead Card. It was a time to
reflect on just how far we'd come in a chronologically short time. During the
stay there was no time to look at the big picture; it was day-after-day of
just trying to keep up. Filling out the card helped us understand the long
view.
If you are in the middle of your first stay and the world
won't resolve itself; if you feel like sleep happened long ago in a distant memory, know
this: there is a long view. Even if you feel like you're walking in circles you
are in fact getting somewhere. Even inching forward is still movement. The
Beads of Courage are a small reminder that things are changing and progress is
being made.
-PG Somerset

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