TO YOU, MY SISTERS
By Maureen K. Higgins
Many of you I have never even met face to face, but I've searched you out every
day. I've looked for you on the internet, on playgrounds and in grocery stores.
I've become an expert at identifying you. You are well worn. You are stronger
than you ever wanted to be. Your words
ring experience, experience you culled with your very heart and soul. You are
compassionate beyond the expectations of this world. You are my
"sisters."
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We
are special. Just like any other sorority, we were chosen to be members. Some
of us were invited to join immediately, some not for months or even years. Some
of us even tried to refuse membership, but to no avail. We were initiated in
neurologist's offices and NICU units, in obstetrician's offices, in emergency
rooms, and during ultrasounds. We were initiated with somber telephone calls,
consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant,
or we had just given birth, or we were nursing our newborn, or we were playing
with our toddler. Yes, one minute everything was fine. Then, whether it
happened in an instant, as it often does, or over the course of a few weeks or
months, our entire lives changed. Something wasn't quite right. Then we found
ourselves mothers of children with special needs. We are united, we sisters,
regardless of the diversity of our children's special needs. Some of our
children undergo chemotherapy. Some need respirators and ventilators. Some are unable
to talk, some are unable to walk. Some eat through feeding tubes. Some live in
a different world. We do not discriminate against those mothers whose
children's needs are not as "special" as our child's. We have mutual
respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials we
could find. We know "the" specialists in the field. We know
"the" neurologists, "the" hospitals, "the" wonder
drugs, "the" treatments. We know "the" tests that need to
be done, we know "the" degenerative and progressive diseases and we
hold our breath while our children are tested for them. Without formal education,
we could become board certified in neurology, endocrinology, and physiatry.
We have taken on our insurance companies and school boards to get what our
children need to survive, and to flourish. We have prevailed upon the State to
include augmentative communication devices in special education classes and
mainstream schools for our children with cerebral palsy. We have labored to prove
to insurance companies the medical necessity of gait trainers and other
adaptive equipment for our children with spinal cord defects. We have sued
municipalities to have our children properly classified so they could receive
education
and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking
away from it. We have tolerated scorn in supermarkets during "tantrums"
and gritted our teeth while discipline was advocated by the person behind us on
line. We have tolerated inane suggestions and home remedies from well-meaning
strangers. We have tolerated mothers of children without special needs complaining
about chicken pox and ear infections. We have learned that many of our closest
friends can't understand what it's like to be in our sorority, and don't even
want to try.
We have our own personal copies of Emily Perl Kingsley's "Welcome to Holland"
and Erma Bombeck's "The Special Mother." We keep them by our bedside
and read and reread them during our toughest hours. We have coped with
holidays. We have found ways to get our physically handicapped children to the
neighbors' front doors on Halloween, and we have found ways to help our deaf
children form the words, "trick or treat." We have accepted that our
children with sensory dysfunction will never wear velvet or lace on Christmas.
We have painted a canvas of lights and a blazing yule log with our words for
our blind children. We have pureed turkey on Thanksgiving. We have bought white
chocolate bunnies for Easter. And all the while, we have tried to create a
festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make
it through another day, and gone to bed every evening not sure how we did it.
We've mourned the fact that we never got to relax and sip red wine in Italy.
We've mourned the fact that our trip to Holland has required much more baggage
than we ever imagined when we first visited the travel agent. And we've mourned
because we left for the airport without most of the things we needed for the
trip.
But we, sisters, we keep the faith always. We never stop believing. Our love
for our special children and our belief in all that they will achieve in life
knows no bounds. We dream of them scoring touchdowns and extra points and home
runs. We visualize them running sprints and
marathons. We dream of them planting vegetable seeds, riding horses and
chopping down trees. We hear their angelic voices singing Christmas carols. We
see their palettes smeared with watercolors, and their fingers flying over
ivory keys in a concert hall. We are amazed
at the grace of their pirouettes. We never stop believing in all they will
accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight
to their little hands as together, we special mothers and our special children,
reach for the stars.