Thursday, December 4, 2008

To All The Moms of Special Needs Children

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 their

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 for the trip.

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