Karin, Mommy to Niel

karins@goba.co.za

Durban

Maryland

Donna, Mommy to Jake

donnaarmacost@hotmail.com

North Carolina

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, and "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, nephrology, 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, 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.