3

bruise, any minor scrape or cut could be fatal. If Ryan's
mother had not been vigilante and skilled at administering
the blood factor Ryan's blood lacked and needed for clotting,
he could have bled to death many times -- from injuries for
which most children would not even need a band-aid.

Double binds are everywhere. Jeanne, although she must
encourage Ryan toward safe and careful behavior (and be
prepared to administer immediate first aid should he err.)
must also try to somehow provide this child with a normal
life. As a good mother, she must allow him to experience
activities and make increasingly independent decisions,
knowing his risks only too well. Now factor into these
opposing pressures another child, a healthy, younger daughter
with her own needs for being mothered.

Aside from these complex family dynamics (in which Jeanne
White was the sole adult) remember this: hemophilia is an
hereditary disease passed from a mother (who carries the
gene, but is healthy) to her son -- who will have the disease.
Guilt.

Guilt. Her experience with guilt did not make Jeanne White a
beaten or bitter women. Instead, she learned compassion and
acceptance -- and she learned to direct her anger at things