we met with a social worker and a nurse from hospice today. they
asked us what we needed and talked over possible grief counseling for
us and the kids. it was kind of weird having this conversation while
my mom rocked pink little jedi.
we discussed what jedi's last moments may look like. with the
existance of the congenital heart defect- truncus arteriosis- the
likelihood of congestive heart failure is high.
it's just so hard. he's beaten such odds! short of planning a trip
to vegas dare we dream he will continue to beat the odds?
in a perfectly healthy child, truncus arteriosis, unchecked by
surgery, will claim it's victim in 2 weeks to 2 months. here comes
more uncertainties, grim prognosises, and windows of time. but i have
learned that God provides- to trust in Him. because "He saves the
best for those who leave the choice to Him".