Thursday, September 4, 2008

Interesting reading

http://cochlearimplantonline.com/blog/?p=270#comment-5808

Very good reading!!

To You, My Sistersby Maureen K. Higgins -

Many of you I have never even met face to face, butI've searched you out every day. I've looked for youon the Internet, on playgrounds and in grocery stores.I've become an expert at identifying you. You are wellworn. You are stronger than you ever wanted to be.Your words ring experience, experience you culled withyour very heart and soul. You are compassionate beyondthe 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 anyother sorority, we were chosen to be members. Some ofus were invited to join immediately, some not formonths or even years. Some of us even tried to refusemembership, but to no avail.We were initiated in neurologist' s offices and NICUs, in obstetrician' s offices, in emergency rooms,and during ultrasounds. We were initiated with sombertelephone calls, consultations, evaluations, bloodtests, x-rays, MRI films, and heart surgeries.All of us have one thing in common. One day thingswere fine. We were pregnant, or we had just givenbirth, or we were nursing our newborn, or we wereplaying with our toddler. Yes, one minute everythingwas fine. Then, whether it happened in an instant, asit often does, or over the course of a few weeks ormonths, our entire lives changed. Something wasn'tquite right. Then we found ourselves mothers ofchildren with special needs.We are united, we sisters, regardless of the diversityof our children's special needs. Some of our childrenundergo chemotherapy. Some need respirators andventilators. Some are unable to talk, some are unableto walk. Some eat through feeding tubes. Some live ina different world. We do not discriminate againstthose mothers whose children's needs are not as"special" as our child's. We have mutual respect andempathy for all the women who walk in our shoes.We are knowledgeable. We have educated ourselves withwhatever 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 wehold our breath while our children are tested forthem. Without formal education, we could become boardcertified in neurology, endocrinology, and psychology.We have taken on our insurance companies and schoolboards to get what our children need to survive, andto flourish. We have prevailed upon the State toinclude augmentative communication devices in specialeducation classes and mainstream schools for ourchildren with cerebral palsy. We have labored to proveto insurance companies the medical necessity of gaittrainers and other adaptive equipment for our childrenwith spinal cord defects. We have sued municipalitiesto have our children properly classified so they couldreceive education and evaluation commensurate withtheir diagnosis. We have learned to deal with the restof the world, even if that means walking away from it.We have tolerated scorn in supermarkets during"tantrums" and gritted our teeth while discipline wasadvocated by the person behind us on line. We havetolerated inane suggestions and home remedies fromwell-meaning strangers. We have tolerated mothers ofchildren without special needs complaining aboutchicken pox and ear infections. We have learned thatmany of our closest friends can't understand what it'slike to be in our sorority, and don't even want totry.We have our own personal copies of Emily PerlKingsley's "A Trip To Holland " and Erma Bombeck's "TheSpecial Mother". We keep them by our bedside and readand reread them during our toughest hours. We havecoped with holidays. We have found ways to get ourphysically handicapped children to the neighbors'front doors on Halloween, and we have found ways tohelp our deaf children form the words, "trick ortreat." We have accepted that our children withsensory dysfunction will never wear velvet or lace onChristmas. We have painted a canvas of lights and ablazing Yule log with our words for our blindchildren. We have pureed turkey on Thanksgiving. Wehave bought white chocolate bunnies for Easter. Andall the while, we have tried to create a festiveatmosphere for the rest of our family. We've gotten upevery morning since our journey began wondering howwe'd make it through another day, and gone to bedevery evening not sure how we did it.We've mourned the fact that we never got to relax andsip red wine in Italy . We've mourned the fact that ourtrip to Holland has required much more baggage than weever imagined when we first visited the travel agent.And we've mourned because we left for the airportwithout most of the things we needed for the trip.But we, sisters, we keep the faith always. We neverstop believing. Our love for our special children andour belief in all that they will achieve in life knowsno bounds. We dream of them scoring touchdowns andextra points and home runs.We visualize them running sprints and marathons. Wedream of them planting vegetable seeds, riding horsesand chopping down trees. We hear their angelic voicessinging Christmas carols. We see their palettessmeared with watercolors, and their fingers flyingover ivory keys in a concert hall. We are amazed atthe grace of their pirouettes. We never, never stopbelieving in all they will accomplish as they passthrough this world.But in the meantime, my sisters, the most importantthing we do, is hold tight to their little hands astogether, we special mothers and our special children,reach for the stars.

I found it on Learn2hear@yahoogroups.com and thought I needed to share it with others too.

1 comment:

  1. Hi Ruchi:

    Thanks a lot for this post. It was very good article and forwarded this to my wife immediately. But I believe I we had already read it as someone else also had send us that in a email. Reading this , I could recollect our earlier days with my daughter. She is going to be 6 years old on November and we had the same journey room NICU to recovery nursing home, visits etc etc. My daughter is a special need child. She needs some help in social environment and finds little difficult to play with her friends of her age. Some say she might be labeled as 'Pervasive development delay'. But she has undergone a lot at her birth and is called a 'Miracle Child' from her Houston hospital where she was born.
    Your daughter 'Prisha' looks very pretty. She is angel.
    Ruchi, also please check out the website http://www.difflearn.com/. I found some interesting toys/teaching aid for our kids. Let me know for any help or information. My email id rvenkkataram@hotmail.com

    With Greetings and Prayers,
    Rajesh

    ReplyDelete