Thoughts from a Special Needs Mom
Many of you I have never even met face to face, but I've searched you
out
everyday.
I've looked for you on the Internet, on playgrounds and in grocery
stores.
I've become an expert in 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 if us were invited to join immediately, some not for months of
even
years.
Some if us even tried to refuse membership, but to no avail.
We were initiated in neurologists 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 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 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
neighbor's 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 at 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.