Guest guest Posted August 27, 2005 Report Share Posted August 27, 2005 i love that its so cool > > > > > > I found this on an autism site and I have to tell you,it totally floored > me. I'm still crying right now. > Enjoy. > > To You, My Sisters > 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 pschylogy. > > 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 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 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 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. > > 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 > extra points 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 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, 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. > > > > ~~~~~Care Today ~ {\o/} ~ CURE Tomorrow~~~~~ > ***** www.RettSyndrome.org <http://www.RettSyndrome.org> ***** > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2005 Report Share Posted August 27, 2005 Thanks Tricia. Barbara > > > > > I found this on an autism site and I have to tell you,it totally floored > me. I'm still crying right now. > Enjoy. > > To You, My Sisters > 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 pschylogy. > > 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 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 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 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. > > 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 > extra points 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 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, 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. > > > > ~~~~~Care Today ~ {\o/} ~ CURE Tomorrow~~~~~ > ***** www.RettSyndrome.org ***** > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2005 Report Share Posted August 27, 2005 That was wonderful. Thanks for sharing. That'll be a new one in my training handouts! Michele W Aubrie's mom > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2005 Report Share Posted August 28, 2005 I have quite simply never been so moved by anything in 's 21 years. I have printed it to share but suddenly cannot think of anyone here who would understand. I do not cry easily. I've fought battles long and hard, as we all have. Tonight, I cry because someone has tapped something that I frankly thought was dead. Oh, are my feelings ever still here! Martha, with many, many thanks for sharing and letting me remember to...feel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2005 Report Share Posted August 28, 2005 if ur feelings r gone so could many others be ellen > > I have quite simply never been so moved by anything in 's 21 years. > I have printed it to share but suddenly cannot think of anyone here who > would understand. I do not cry easily. I've fought battles long and hard, > as > we all have. Tonight, I cry because someone has tapped something that I > frankly thought was dead. Oh, are my feelings ever still here! Martha, > with > many, many thanks for sharing and letting me remember to...feel. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2005 Report Share Posted August 28, 2005 Again the timing of the posts are profound in my life. I just went for my physical and almost begged for the doctor to prescribe counseling for me. She knows Patty and asked if I were depressed, I said no. She asked me if I thought I needed medication, again a NO. she asked if I were anxious, I laughed. She asked if I had trouble sleeping, Ha. Then she asked me why I wanted counseling. All I could say is, It's not Patty, but all the stuff that goes with being her mother. It is the fighting of the long hard battles. The fight doesn't ever seem to end. It just changes. I have a hard time with forgiveness. And then we spend so much time sucking it up, putting a smile on our faces and moving on that we forget to let ourselves feel, or at least putting validity on our feelings. But if we really did, we wouldn't get anything done. Boy am I printing this out and bringing it with me to the appointment. Thanks! Bonnie, mom to a 22, Patty CHARGE 20, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2005 Report Share Posted August 28, 2005 Martha- Isn't it something how we have to learn to manage the emotional side of things?? Denial or " stuffing " seems to be necessary to get thru the day, but we also need to express and " have " those feelings. How to balance it all??? I would guess that all this current stuff with is adding to your emotional baggage and the poem came at the perfect time to let some of it out. We can't just wallow in our grief and frustrations, but we also can't get rid of them. With a long term thing like CHARGE, those emotions can't be " resolved " and ever put completely to rest. I find this very challenging. Michele W ellen howe wrote: > if ur feelings r gone so could many others be ellen > > > > > > I have quite simply never been so moved by anything in 's 21 years. > > I have printed it to share but suddenly cannot think of anyone here who > > would understand. I do not cry easily. I've fought battles long and > hard, > > as > > we all have. Tonight, I cry because someone has tapped something that I > > frankly thought was dead. Oh, are my feelings ever still here! Martha, > > with > > many, many thanks for sharing and letting me remember to...feel. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2005 Report Share Posted August 28, 2005 Bonnie- I don't have time for a good post, but I wanted to let you know you've been heard. We need to talk. Michele Turk22082@... wrote: > Again the timing of the posts are profound in my life. > > I just went for my physical and almost begged for the doctor to prescribe > counseling for me. She knows Patty and asked if I were depressed, I > said no. She > asked me if I thought I needed medication, again a NO. she asked if I > were > anxious, I laughed. She asked if I had trouble sleeping, Ha. Then > she asked me > why I wanted counseling. > > All I could say is, It's not Patty, but all the stuff that goes with > being > her mother. It is the fighting of the long hard battles. The fight > doesn't > ever seem to end. It just changes. > > I have a hard time with forgiveness. And then we spend so much time > sucking > it up, putting a smile on our faces and moving on that we forget to let > ourselves feel, or at least putting validity on our feelings. But if > we really did, > we wouldn't get anything done. > > Boy am I printing this out and bringing it with me to the appointment. > > Thanks! > > > Bonnie, mom to a 22, Patty CHARGE 20, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2005 Report Share Posted August 30, 2005 Wow is that dead on! tx for sharing Kim Re: To you, my Sisters Thanks Tricia. Barbara > > > > > I found this on an autism site and I have to tell you,it totally floored > me. I'm still crying right now. > Enjoy. > > To You, My Sisters > 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 pschylogy. > > 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 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 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 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. > > 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 > extra points 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 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, 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. > > > > ~~~~~Care Today ~ {\o/} ~ CURE Tomorrow~~~~~ > ***** www.RettSyndrome.org ***** > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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