SISTERS
Many of you I have never even met face to face, but I've searched youout every day. I've looked for you on the internet, on playgroundsand in grocery stores. I've become an expert at identifying you. Youare well worn. You are stronger than you ever wanted to be. Yourwords ring experience, experience you culled with your very heart andsoul. You are compassionate beyond the expectations of this world.You are my "sisters."
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Yes, you and I, my friend, are sisters in a sorority. A very elitesorority. We are special. Just like any other sorority, we werechosen to be members. Some of us were invited to join immediately,some not for months or even years. Some of us even tried to refusemembership, but to no avail
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We were initiated in neurologist's offices and NICU units, inobstetrician'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.
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All of us have one thing in common. One day things were fine. We werepregnant, or we had just given birth, or we were nursing our newborn,or we were playing with our toddler. Yes, one minute everything wasfine. Then, whether it happened in an instant, as it often does, orover the course of a few weeks or months, our entire lives changed.Something wasn't quite right. Then we found ourselves mothers ofchildren with special needs.
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We are united, we sisters, regardless of the diversity of ourchildren's special needs. Some of our children undergo chemotherapy.Some need respirators and ventilators. Some are unable to talk, someare unable to walk. Some eat through feeding tubes. Some live in adifferent world. We do not discriminate against those mothers whosechildren's needs are not as "special" as our child's. We have mutualrespect and empathy for all the women who walk in our shoes.
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We are knowledgeable. We have educated ourselves with whatevermaterials we could find. We know "the" specialists in the field.We know "the" neurologists, "the" hospitals, "the" wonderdrugs, "the" treatments. We know "the" tests that need to be done, weknow "the" degenerative and progressive diseases and we hold ourbreath while our children are tested for them. Without formaleducation, we could become board certified in neurology,endocrinology, and physiatry.
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We have taken on our insurance companies and school boards to getwhat our children need to survive, and to flourish. We have prevailedupon the State to include augmentative communication devices inspecial education classes and mainstream schools for our childrenwith cerebral palsy. We have labored to prove to insurance companiesthe medial necessity of gait trainers and other adaptive equipmentfor our children with spinal cord defects. We have suedmunicipalities to have our children properly classified so they couldreceive education and evaluation commensurate with their diagnosis.
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We have learned to deal with the rest of the world, even if thatmeans walking away from it. We have tolerated scorn in supermarketsduring "tantrums" and gritted our teeth while discipline wasadvocated by the person behind us on line. We have tolerated inanesuggestions and home remedies from well-meaning strangers. We havetolerated mothers of children without special needs complaining aboutchicken pox and ear infections. We have learned that many of ourclosest friends can't understand what it's like to be in oursorority, and don't even want to try.
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We have our own personal copies of Emily Perl Kingsley's "A Trip ToHolland" and Erma Bombeck's "The Special Mother." We keep them by ourbedside and read and reread them during our toughest hours.
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We have coped with holidays. We have found ways to get our physicallyhandicapped children to the neighbors' front doors on Halloween, andwe have found ways to help our deaf children form the words, "trickor treat." We have accepted that our children with sensorydysfunction will never wear velvet or lace on Christmas. We havepainted a canvas of lights and a blazing yule log with our words forour blind children. We have pureed turkey on Thanksgiving. We havebought white chocolate bunnies for Easter. And all the while, we havetried to create a festive atmosphere for the rest of our family.
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We've gotten up every morning since our journey began wondering howwe'd make it through another day, and gone to bed every evening notsure how we did it.
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We've mourned the fact that we never got to relax and sip red wine inItaly. We've mourned the fact that our trip to Holland has requiredmuch more baggage than we ever imagined when we first visited thetravel agent. And we've mourned because we left for the airportwithout most of the things we needed for the trip.
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But we, sisters, we keep the faith always. We never stop believing.Our love for our special children and our belief in all that theywill achieve in life knows no bounds. We dream of them scoringtouchdowns and extra points and home runs. We visualize them runningsprints and marathons. We dream of them planting vegetable seeds,riding horses and chopping down trees. We hear their angelic voicessinging Christmas carols. We see their palettes smeared withwatercolors, and their fingers flying over ivory keys in a concerthall. We are amazed at the grace of their pirouettes. We never, neverstop believing in all they will accomplish as they pass through thisworld.
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But in the meantime, my sisters, the most important thing we do, ishold tight to their little hands as together, we special mothers andour special children, reach for the stars.
By Maureen K. Higgins
