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 with 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 psychology.
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 in
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.
Happy Mother's Day
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