978-1572305441

Sophie 187
thusiasm in the report she sent home to Sophie’s parents. Marianne and
Greg were delighted for days and made a special point of telling me.
* * *
If this were a fairy tale, the story should have a “happy” ending.
The act of bravery, courage, and compassion should be rewarded with
the emergence of a normal child who plays with the other children on
the street, who goes to her local school and to fast food outlets to eat
hamburgers and french fries. But no, instead she draws pictures with
feathers, drags a branch along the ground, and is silent. But this is a
happy ending. Sophie is no disappointment to her parents. They do not
for one moment regret the fateful decision to adopt her. That one choice
was made in an instant, in full knowledge of its consequences for them,
if not for her.
Each family of a child with autism has its own defining moment,
and in point of fact there are many such moments in a family’s lifetime.
Moments when a decision is made, when a realization happens, when
the past with its naive hopes and dreams is let go and a future is chosen,
accepted with equanimity, repose, and resolve. Sometimes that moment
first occurs when a diagnosis is given, sometimes it first occurs after
many years when the expected cure or recovery does not materialize.
That defining moment is an acceptance of the weight of biological fate
but not a surrender to its limits. Each family eventually realizes what
life has in store for them and can accept that but will never give up the
struggle to improve the lot of their child and to advocate for more and
better services for all children. The act of rescue performed by Greg and
Marianne was such a defining act, made very early on by two people in
the silence of their own hearts, over the telephone thousands of miles
apart. They had the courage to choose this misfortune, they took it in,
nourished it, then challenged and celebrated it. In the process, they
themselves were transformed. By taking small steps every day and
learning Sophie’s secret language, they learned the value of seeing with
new perspectives, of imagining the mind of their child, so dark and
mysterious, and of seeing the gifts within the disability. Sophie gave
them the courage to achieve a state of compassion, which is as close to
grace as possible nowadays. Courage does indeed lie in small acts performed
every day by ordinary people who find themselves in unexpected
circumstances. Others might say such acts are foolish, but then
foolishness is often the prerogative of the brave.