Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 Thanks , It really made me cry, it is so incredibly true and I don't think anyone would really understand it unless they had experienced what it is like to have a " special " child. Thank you, it was beautiful. ('s mom in Australia) > > Hello everyone, > > I can tell by a lot of the posts lately, that it is time for me to post this once again, for the benifit of all our new Mom's. I LOVED it the very first time I heard it and it makes me cry each time I reread it. It rings so true. Hope you 'my special sisters' enjoy it. > > Smiles from, > Baker - Mom to Jeff Baker (22 yr. old CHARGEr) > http://www.caringbridge.org/me/jeffbaker > > > > To You, My Sisters > > 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 physiatry. > > 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 in 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. > > By Maureen K. Higgins > > -- Re: Charge > > Les, > > I think it is amazing that though we don't know each > other, we all share the same story and such similar > exepriences. > > Nearly a year ago, as I was sitting in the NICU with > my sister, both of us staring at Vinny in disbelief > and sadness, and she said to me something along these > lines: " You know how we go through our lives > connecting with others and joining all kinds of clubs > and groups? Well, now you are in a new club. > Whenever you meet parents who have a child with > special needs, you will have a connection with them. > That connection will be deeper than anything I or the > majority of parents will ever understand. " > > Never did I think I would feel so connected to people > across the world who I have yet to meet, but share the > same story. Though I never knew this would be part of > my life, I feel honored to be in this " club " filled > with such amazing individuals. > > ina, mom to Luca (3) & Vinny (14 months w/ cHARgE) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 I absolutely love and appreciate this post. Thank you so much, sisters. It's funny and so wonderful how I can go to my email address and find just what I need. chrystal mom to arleigh (almost 4) and chrystine (almost 10 months CHaRGE+chronic kidney disease+diabetes) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 Hi , I forwarded this letter about " my special sisters " onto Marie from our CHARGE syndrome association in Australia and she loved it so much that she wants to find out how she can get permission to reprint it for our upcomming Australian CHARGE conference next month. Please could you let me know... thanks. ('s mom) you can always email me privately if you prefer, angelabegas@... > > Hello everyone, > > I can tell by a lot of the posts lately, that it is time for me to post this once again, for the benifit of all our new Mom's. I LOVED it the very first time I heard it and it makes me cry each time I reread it. It rings so true. Hope you 'my special sisters' enjoy it. > > Smiles from, > Baker - Mom to Jeff Baker (22 yr. old CHARGEr) > http://www.caringbridge.org/me/jeffbaker > > > > To You, My Sisters > > 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 physiatry. > > 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 in 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. > > By Maureen K. Higgins > > -- Re: Charge > > Les, > > I think it is amazing that though we don't know each > other, we all share the same story and such similar > exepriences. > > Nearly a year ago, as I was sitting in the NICU with > my sister, both of us staring at Vinny in disbelief > and sadness, and she said to me something along these > lines: " You know how we go through our lives > connecting with others and joining all kinds of clubs > and groups? Well, now you are in a new club. > Whenever you meet parents who have a child with > special needs, you will have a connection with them. > That connection will be deeper than anything I or the > majority of parents will ever understand. " > > Never did I think I would feel so connected to people > across the world who I have yet to meet, but share the > same story. Though I never knew this would be part of > my life, I feel honored to be in this " club " filled > with such amazing individuals. > > ina, mom to Luca (3) & Vinny (14 months w/ cHARgE) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 WOw that is really powerful!!! Thanks for sharing it!! Hugs, Crystal mom to (10), (3), and Eva (16 month CHARGEr) wife to Dan > > Hello everyone, > > I can tell by a lot of the posts lately, that it is time for me to post this once again, for the benifit of all our new Mom's. I LOVED it the very first time I heard it and it makes me cry each time I reread it. It rings so true. Hope you 'my special sisters' enjoy it. > > Smiles from, > Baker - Mom to Jeff Baker (22 yr. old CHARGEr) > http://www.caringbridge.org/me/jeffbaker > > > > To You, My Sisters > > 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 physiatry. > > 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 in 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. > > By Maureen K. Higgins > > -- Re: Charge > > Les, > > I think it is amazing that though we don't know each > other, we all share the same story and such similar > exepriences. > > Nearly a year ago, as I was sitting in the NICU with > my sister, both of us staring at Vinny in disbelief > and sadness, and she said to me something along these > lines: " You know how we go through our lives > connecting with others and joining all kinds of clubs > and groups? Well, now you are in a new club. > Whenever you meet parents who have a child with > special needs, you will have a connection with them. > That connection will be deeper than anything I or the > majority of parents will ever understand. " > > Never did I think I would feel so connected to people > across the world who I have yet to meet, but share the > same story. Though I never knew this would be part of > my life, I feel honored to be in this " club " filled > with such amazing individuals. > > ina, mom to Luca (3) & Vinny (14 months w/ cHARgE) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2006 Report Share Posted August 21, 2006 Hi , It is a well know piece and has been printed many times. As long as credit is given to the author I don't think there should be a problem. I just did a google search of Maureen K. Higgins and her piece comes up under different sites. If it is used there, I would think you could use it also. Smiles from, Baker - Mom to Jeff Baker (22 yr. old CHARGEr) http://www.caringbridge.org/me/jeffbaker Re: Charge > > Les, > > I think it is amazing that though we don't know each > other, we all share the same story and such similar > exepriences. > > Nearly a year ago, as I was sitting in the NICU with > my sister, both of us staring at Vinny in disbelief > and sadness, and she said to me something along these > lines: " You know how we go through our lives > connecting with others and joining all kinds of clubs > and groups? Well, now you are in a new club. > Whenever you meet parents who have a child with > special needs, you will have a connection with them. > That connection will be deeper than anything I or the > majority of parents will ever understand. " > > Never did I think I would feel so connected to people > across the world who I have yet to meet, but share the > same story. Though I never knew this would be part of > my life, I feel honored to be in this " club " filled > with such amazing individuals. > > ina, mom to Luca (3) & Vinny (14 months w/ cHARgE) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2006 Report Share Posted August 21, 2006 Thanks . -- In CHARGE , " Baker " wrote: > > Hi , > It is a well know piece and has been printed many times. As long as credit is given to the author I don't think there should be a problem. I just did a google search of Maureen K. Higgins and her piece comes up under different sites. If it is used there, I would think you could use it also. > Smiles from, > Baker - Mom to Jeff Baker (22 yr. old CHARGEr) > http://www.caringbridge.org/me/jeffbaker > > Re: Charge > > > > Les, > > > > I think it is amazing that though we don't know each > > other, we all share the same story and such similar > > exepriences. > > > > Nearly a year ago, as I was sitting in the NICU with > > my sister, both of us staring at Vinny in disbelief > > and sadness, and she said to me something along these > > lines: " You know how we go through our lives > > connecting with others and joining all kinds of clubs > > and groups? Well, now you are in a new club. > > Whenever you meet parents who have a child with > > special needs, you will have a connection with them. > > That connection will be deeper than anything I or the > > majority of parents will ever understand. " > > > > Never did I think I would feel so connected to people > > across the world who I have yet to meet, but share the > > same story. Though I never knew this would be part of > > my life, I feel honored to be in this " club " filled > > with such amazing individuals. > > > > ina, mom to Luca (3) & Vinny (14 months w/ cHARgE) > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2006 Report Share Posted August 22, 2006 That was so..so....I can't even finfs words to describe it, but it rings true.....Thank you .... Lia ina Multhaupt wrote: Thank you, ! That was so beautiful... and true. ina, mom to Luca (30 & Vinny (14 months w/ cHARgE) --- Baker wrote: > Hello everyone, > > I can tell by a lot of the posts lately, that > it is time for me to post this once again, for the > benifit of all our new Mom's. I LOVED it the very > first time I heard it and it makes me cry each time > I reread it. It rings so true. Hope you 'my > special sisters' enjoy it. > > Smiles from, > Baker - Mom to Jeff Baker (22 yr. old CHARGEr) > http://www.caringbridge.org/me/jeffbaker > > > > To You, My Sisters > > 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 physiatry. > > 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 in 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. > > By Maureen K. Higgins > > -- Re: Charge > > Les, > > I think it is amazing that though we don't know each > other, we all share the same story and such similar > exepriences. > > Nearly a year ago, as I was sitting in the NICU with > my sister, both of us staring at Vinny in disbelief > and sadness, and she said to me something along > these > lines: " You know how we go through our lives > connecting with others and joining all kinds of > clubs > and groups? Well, now you are in a new club. > Whenever you meet parents who have a child with > special needs, you will have a connection with them. > That connection will be deeper than anything I or > the > majority of parents will ever understand. " > > Never did I think I would feel so connected to > people > across the world who I have yet to meet, but share > the > same story. Though I never knew this would be part > of > my life, I feel honored to be in this " club " filled > with such amazing individuals. > > ina, mom to Luca (3) & Vinny (14 months w/ > cHARgE) > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 Wow!! Thank you for sharing. Judy Baker wrote: Hello everyone, I can tell by a lot of the posts lately, that it is time for me to post this once again, for the benifit of all our new Mom's. I LOVED it the very first time I heard it and it makes me cry each time I reread it. It rings so true. Hope you 'my special sisters' enjoy it. Smiles from, Baker - Mom to Jeff Baker (22 yr. old CHARGEr) http://www.caringbridge.org/me/jeffbaker To You, My Sisters 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 physiatry. 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 in 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. By Maureen K. Higgins -- Re: Charge Les, I think it is amazing that though we don't know each other, we all share the same story and such similar exepriences. Nearly a year ago, as I was sitting in the NICU with my sister, both of us staring at Vinny in disbelief and sadness, and she said to me something along these lines: " You know how we go through our lives connecting with others and joining all kinds of clubs and groups? Well, now you are in a new club. Whenever you meet parents who have a child with special needs, you will have a connection with them. That connection will be deeper than anything I or the majority of parents will ever understand. " Never did I think I would feel so connected to people across the world who I have yet to meet, but share the same story. Though I never knew this would be part of my life, I feel honored to be in this " club " filled with such amazing individuals. ina, mom to Luca (3) & Vinny (14 months w/ cHARgE) Quote Link to comment Share on other sites More sharing options...
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