Thoughts of a Mom

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, in pediatricians offices, in emergency rooms and during ultrasounds.  We were initiated with somber telephone calls, consultations,  evaluations, blood tests, x-rays, MRI films and 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 autistic children.

We are united, regardless of the diversity of our children's needs.  Some of our children undergo chelation,  some are unable to talk, 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.  We have labored to prove to insurance companies the medical necessity of treatment and therapies for our children.  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 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 coped with holidays.  We have found ways to get our children to the neighbors' front doors on Halloween and we have attempted to help them 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 selected GFCF foods on Thanksgiving.  We have found ways to deal with 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.

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  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 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.

 
 
 


TAAP   |   Casi's Quest