Thoughts of a Mom
Many of you, I have never 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 or wished to be. Your words ring experience. Experiences you can recall with your very hearts 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 to no avail. We were initiated in neurologist's offices, NICU units, obstetrician's offices, in emergency rooms and even during ultrasounds. We were initiated with just a somber telephone call, a consultation, routine blood tests, x-rays or during heart surgeries.
All of us have one thing in common. There was one day things were fine. We were pregnant, had just given birth or even playing with our toddlers. Yes, for 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, us sisters, regardless of the diversity of our children's
special needs. Some of our children undergo chemo. Some need respirators and ventilators. Some are unable to talk or walk. Some eat through a feeding tube. Some live in a different world.
We do not discriminate against those mothers who have children that are not as "special" as our own child. We have mutual respect and empathy for all of 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 best neurologists in the field. We know the best cardiologists. We know the Children's Hospital phone number by heart.
We all know the wonder drugs and the best treatments. We know all of the secondary tests by heart and hold our breath while our children are tested for them. Without formal education, we could become Board Certified in Neurology, Endocrinology, Cardiology, and Psychiatry.
We have taken on our insurance companies and school boards to get what our children need to survive and flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with Autism, Cerebral Palsy and Down Syndrome. We have labored to prove to insurance companies the medical necessity in treatments and Gait Trainers; we have sued municipalities to have our children properly classified so they could receive education and evaluation to 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 insane 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 nearest and dearest friends can't understand what it is like to be in our "sorority" and don't even want to try.
We have our own personal copies of Emily Pearl Kingsley's "A Trip to Holland" and Erma Bombeck's "The Special Mother". We keep them by our bedside and read and re-read them during our toughest hours.
We have coped with the holidays. We have found ways to get our physically handicapped children to the neighbor's front door on Halloween and we have found ways to help our deaf children say "Trick or Treat". We have accepted that our children with sensory issues will never wear velvet or lace on Christmas. We have pureed turkey on Thanksgiving and we have bought white chocolate bunnies for Easter. All the while, we have tried to create a festive atmosphere for the rest of our family.
We have gotten up every morning since our journey began and wondered how we would make it through another day and gone to bed every night not quite sure how we did it. We have mourned the fact that we never got to relax and sip red wine. We have mourned the fact that our trip to anywhere has required much more baggage than we ever imagined when we first visited the travel agent. We have mourned because we left for the airport without most of the things we needed most for the trip.
But at last sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all they will achieve in life knows no bounds. We dream of our kids scoring touchdowns, extra points and hitting 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, ever stop believing in all they will accomplish as they pass through this world.
So in the meantime, my sisters, the most important thing we do is hold tight to their little hands and together, we special mothers with our special children and those who's children have received their angel wings,
REACH FOR THE STARS...