For everyone (especially the newbies)

amajane · April 2010

I've posted this before but this is one of my favorite essays about being a mom of a special needs child.

Some of you sound like you could use a big hug right now.

So here is my big hug for all of you:

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 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 Peri 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.