Going Greek
I was never in a sorority. In fact, my University didn’t even have a Greek life. For real. It was is a very small Southern Baptist University located in the ghetto. Anyway, no alcohol on campus, no dancing (heaven forbid), no co-mingling in dorms except for open dorm night (once a week for 2 hours where “all 4 on the floor” was the rule). However, that’s not the point. The point is that my friend (whose daughter also has SOD) sent me this story. It rings so true for me. I hope you enjoy it.
Thoughts of a Mom
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
psychiatry.
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 heir 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 forthe 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.
