To You, My Sisters
by Maureen K. Higgins - submitted
by Tricia Luker
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 pschylogy.
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 "A Trip 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, 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.
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