Darleen is adopted, so I would never tell you that I know how it feels
to wait nine months for the joy of your life to arrive, then watch her grow
and develop until suddenly it all goes wrong. Darleen was eight when I first
met her, and eleven when she joined our family. She was very disabled, but we did
not know anything about Rett syndrome in 1972. So, we sort of knew a bit of
what we were getting in to.
During those early years with Darleen, I was also an Early Intervention Specialist. I saw, supported, trained and counseled
many parents as they learned their little ones were diagnosed with one
disabling condition or another. I have seen every reaction imaginable from "I can't
do this" ( and the child went into foster care) to "What do we do now?"
to the few who just said, "Ok, let's get on with loving and caring for this
baby." I could never see a predictor that would indicate how a parent, or
a sibling would react, or cope over the years to come. All I know is that
almost all families, given time to grieve at their own pace, and given the support
they needed and wanted over time, were able to reach a level of acceptance,
and learn the skills and coping mechanisms needed to move onto a new
direction for their lives.
I am comfortable with using the word "devastated" to describe the
effect the diagnosis has on the family. I am comfortable using the word"devastating" to describe the effects Rett syndrome has on the child. But
a family does not have to continue in the devastated mode forever. Just how they
come to terms with what life has handed them, and how they cope with the burden
will be different for each. I only wish our society could see that our families
must be supported and the child's needs met without undue burden on the
finances or family unit.
Darleen is heading for her 48th birthday. We have almost lost her many
times. I still stand by her bedside and watch her breathe. I am still sad
that she has not been able to do the things a non-disabled woman would be
doing. I am sad that her life has been so hard. But I am not devastated
any longer, though her health may be. She is not devastated either. She has
lived a full life of fun, learning, travel, and the wonderful companionship of
countless numbers of people. My wish for every parent is that they will
learn to cherish each moment of every day, and help their child grow through the
years by nurturing every aspect of their being.
Priscilla Sherman
