Guest guest Posted February 13, 2008 Report Share Posted February 13, 2008 Dear , It is really hard to say this... but our son , who has severe PMG... has never developed the ability to crawl. But what you have to wrap your heart around is this... prayers for the best that she can do... that she will develop to her full God blessed potential. I used to prayer that someday would crawl, walk, talk, eat solid foods,.. but now.. we pray that will be blessed with the best that he can possibly be. NOW..dont be depressed by this... because here is what he can do!! He does not " crawl " but he can roll and wiggle and jiggle and move in seconds flat across any floor!.. He can walk, IN a specially developed walker, he has much improved use of his hands, he laughs and laughs and we have learned over the years to stop worrying about what he CAN NOT do... And be grateful...for what he can do. It is in that positive spirit... that these kids flourish. Just love her, pray for her doctors, pray for her therapists, pray for her little 19 month old body to be strong against adversity... But as you have read on these posts, motor skills are often very developmentally affected. I guess after 10 years.... we have a different perspective, but is getting stronger, and growing, and enjoying life as much as all of us...if not more. Despite all his overwhelming issues... he is an angel.... in how he has adapted to his disabilities. God bless you for reaching out. Look beyond the crawling... bless the heart and hope for the best..whatever God's plan may be. Sincerely, , Mom to , age 10... wrote: Hello everyone! I know I havn't not posted anything or responded to anyones post but I do read what you write and keep tabs on what's going on with everyone's little angle. I am writing this because our family needs as many prayers as possible. My niece has severe PMG. She is 19 months, doesn't walk, crawl, she is legally blind and deaf. She also doesn't have great head contral. She attends therapy three times a week and we have seen a small amount of improvement and she does have some head control now, but very small. Well, yesterday, the therapist told my mom (baby 's grandma) that will never be walk or crawl. Her brain is badly damaged to the point where they believe this is true. I believe in god and I believe that miracles can happen. So I am asking that everyone please pray for our little to one day be able to crawl. Even she never walks, just for her to crawl would be the happiest thing in the world to us. I am not sure if anyone else has a baby that is this seviere but it is very hard on all of us. She is the most beautiful baby and only has love to give. Someone told us once that God tends to make these speacial babys particularly beautiful (so not just our baby, but everyones specail baby) God creates just so perfectly. He doesn't make mistakes and we can't help but wonder how we got so lucky with a baby like her. I know she will require a lot of care esp. since she can't help herself. So I am starting a prayer chain. Please Please pray for our baby to one day crawl. Thank you so much. Auntie to Olivia Anne Petros Severe PMG In the middle of a difficulty lies opportunity. Einstein, Albert Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2008 Report Share Posted February 13, 2008 OUr prayers are with you. Patty To: polymicrogyria@...: meg_nichole02@...: Thu, 14 Feb 2008 01:16:14 +0000Subject: Serious PMG Hello everyone! I know I havn't not posted anything or responded to anyones post but I do read what you write and keep tabs on what's going on with everyone's little angle. I am writing this because our family needs as many prayers as possible. My niece has severe PMG. She is 19 months, doesn't walk, crawl, she is legally blind and deaf. She also doesn't have great head contral. She attends therapy three times a week and we have seen a small amount of improvement and she does have some head control now, but very small. Well, yesterday, the therapist told my mom (baby 's grandma) that will never be walk or crawl. Her brain is badly damaged to the point where they believe this is true. I believe in god and I believe that miracles can happen. So I am asking that everyone please pray for our little to one day be able to crawl. Even she never walks, just for her to crawl would be the happiest thing in the world to us. I am not sure if anyone else has a baby that is this seviere but it is very hard on all of us. She is the most beautiful baby and only has love to give. Someone told us once that God tends to make these speacial babys particularly beautiful (so not just our baby, but everyones specail baby) God creates just so perfectly. He doesn't make mistakes and we can't help but wonder how we got so lucky with a baby like her. I know she will require a lot of care esp. since she can't help herself. So I am starting a prayer chain. Please Please pray for our baby to one day crawl. Thank you so much. Auntie to Olivia Anne Petros Severe PMG _________________________________________________________________ Climb to the top of the charts! Play the word scramble challenge with star power. http://club.live.com/star_shuffle.aspx?icid=starshuffle_wlmailtextlink_jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 , will be in our prayers. It seems she has a wonderful family that loves her very much. Donna Serious PMG Hello everyone! I know I havn't not posted anything or responded to anyones post but I do read what you write and keep tabs on what's going on with everyone's little angle. I am writing this because our family needs as many prayers as possible. My niece has severe PMG. She is 19 months, doesn't walk, crawl, she is legally blind and deaf. She also doesn't have great head contral. She attends therapy three times a week and we have seen a small amount of improvement and she does have some head control now, but very small. Well, yesterday, the therapist told my mom (baby 's grandma) that will never be walk or crawl. Her brain is badly damaged to the point where they believe this is true. I believe in god and I believe that miracles can happen. So I am asking that everyone please pray for our little to one day be able to crawl. Even she never walks, just for her to crawl would be the happiest thing in the world to us. I am not sure if anyone else has a baby that is this seviere but it is very hard on all of us. She is the most beautiful baby and only has love to give. Someone told us once that God tends to make these speacial babys particularly beautiful (so not just our baby, but everyones specail baby) God creates just so perfectly. He doesn't make mistakes and we can't help but wonder how we got so lucky with a baby like her. I know she will require a lot of care esp. since she can't help herself. So I am starting a prayer chain. Please Please pray for our baby to one day crawl. Thank you so much. Auntie to Olivia Anne Petros Severe PMG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 My daughter Chloe who also has severe pmg is even less able than . She can move her limbs about but can not move around herself, or grasp anything, or talk or eat (she swallows but can not chew and so mainly tube fed) She does see and hear well however, but does not respond to say, her name. She may well look over in response to the noise but does not appear to understand what is said. I know this is going to be controversial to say on this group but pray?? If there is a God, why were our kids born like this? Dom, father to Chloe, aged 6 diffuse bilateral pmg, G tube, rotational osteotomy ops on each hip, epilepsy, cannot sit, walk, talk etc, however a happy smiley (most of the time) little girl Re: Serious PMG Dear , It is really hard to say this... but our son , who has severe PMG... has never developed the ability to crawl. But what you have to wrap your heart around is this... prayers for the best that she can do... that she will develop to her full God blessed potential. I used to prayer that someday would crawl, walk, talk, eat solid foods,.. but now.. we pray that will be blessed with the best that he can possibly be. NOW..dont be depressed by this... because here is what he can do!! He does not " crawl " but he can roll and wiggle and jiggle and move in seconds flat across any floor!.. He can walk, IN a specially developed walker, he has much improved use of his hands, he laughs and laughs and we have learned over the years to stop worrying about what he CAN NOT do... And be grateful...for what he can do. It is in that positive spirit... that these kids flourish. Just love her, pray for her doctors, pray for her therapists, pray for her little 19 month old body to be strong against adversity... But as you have read on these posts, motor skills are often very developmentally affected. I guess after 10 years.... we have a different perspective, but is getting stronger, and growing, and enjoying life as much as all of us...if not more. Despite all his overwhelming issues... he is an angel.... in how he has adapted to his disabilities. God bless you for reaching out. Look beyond the crawling... bless the heart and hope for the best..whatever God's plan may be. Sincerely, , Mom to , age 10... wrote: Hello everyone! I know I havn't not posted anything or responded to anyones post but I do read what you write and keep tabs on what's going on with everyone's little angle. I am writing this because our family needs as many prayers as possible. My niece has severe PMG. She is 19 months, doesn't walk, crawl, she is legally blind and deaf. She also doesn't have great head contral. She attends therapy three times a week and we have seen a small amount of improvement and she does have some head control now, but very small. Well, yesterday, the therapist told my mom (baby 's grandma) that will never be walk or crawl. Her brain is badly damaged to the point where they believe this is true. I believe in god and I believe that miracles can happen. So I am asking that everyone please pray for our little to one day be able to crawl. Even she never walks, just for her to crawl would be the happiest thing in the world to us. I am not sure if anyone else has a baby that is this seviere but it is very hard on all of us. She is the most beautiful baby and only has love to give. Someone told us once that God tends to make these speacial babys particularly beautiful (so not just our baby, but everyones specail baby) God creates just so perfectly. He doesn't make mistakes and we can't help but wonder how we got so lucky with a baby like her. I know she will require a lot of care esp. since she can't help herself. So I am starting a prayer chain. Please Please pray for our baby to one day crawl. Thank you so much. Auntie to Olivia Anne Petros Severe PMG In the middle of a difficulty lies opportunity. Einstein, Albert Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 God knew that special kids have to go to special parents that are gonna love them and care for them...I find myself thinking like that but i know people that did meth and drank the whole time they were pregnant and nothing is wrong with there kids and i get so angry at god for not giving that child problems but then i realize that if god would have gave that child problems he prolly wouldnt get the adequate medical care that he needed im just thankful that my son has me for a parent and from what i can tell everyone else in this group their children are lucky to have them as parents..I try to thank god everyday for giving me this wonderful miracle that has changed my life in so many ways for the better.... natasha mom of zach 3 pmg clubfoot, zoey 1 Re: Serious PMG Dear , It is really hard to say this... but our son , who has severe PMG... has never developed the ability to crawl. But what you have to wrap your heart around is this... prayers for the best that she can do... that she will develop to her full God blessed potential. I used to prayer that someday would crawl, walk, talk, eat solid foods,.. but now.. we pray that will be blessed with the best that he can possibly be. NOW..dont be depressed by this... because here is what he can do!! He does not " crawl " but he can roll and wiggle and jiggle and move in seconds flat across any floor!.. He can walk, IN a specially developed walker, he has much improved use of his hands, he laughs and laughs and we have learned over the years to stop worrying about what he CAN NOT do... And be grateful...for what he can do. It is in that positive spirit... that these kids flourish. Just love her, pray for her doctors, pray for her therapists, pray for her little 19 month old body to be strong against adversity... But as you have read on these posts, motor skills are often very developmentally affected. I guess after 10 years.... we have a different perspective, but is getting stronger, and growing, and enjoying life as much as all of us...if not more. Despite all his overwhelming issues... he is an angel.... in how he has adapted to his disabilities. God bless you for reaching out. Look beyond the crawling... bless the heart and hope for the best..whatever God's plan may be. Sincerely, , Mom to , age 10... wrote: Hello everyone! I know I havn't not posted anything or responded to anyones post but I do read what you write and keep tabs on what's going on with everyone's little angle. I am writing this because our family needs as many prayers as possible. My niece has severe PMG. She is 19 months, doesn't walk, crawl, she is legally blind and deaf. She also doesn't have great head contral. She attends therapy three times a week and we have seen a small amount of improvement and she does have some head control now, but very small. Well, yesterday, the therapist told my mom (baby 's grandma) that will never be walk or crawl. Her brain is badly damaged to the point where they believe this is true. I believe in god and I believe that miracles can happen. So I am asking that everyone please pray for our little to one day be able to crawl. Even she never walks, just for her to crawl would be the happiest thing in the world to us. I am not sure if anyone else has a baby that is this seviere but it is very hard on all of us. She is the most beautiful baby and only has love to give. Someone told us once that God tends to make these speacial babys particularly beautiful (so not just our baby, but everyones specail baby) God creates just so perfectly. He doesn't make mistakes and we can't help but wonder how we got so lucky with a baby like her. I know she will require a lot of care esp. since she can't help herself. So I am starting a prayer chain. Please Please pray for our baby to one day crawl. Thank you so much. Auntie to Olivia Anne Petros Severe PMG In the middle of a difficulty lies opportunity. Einstein, Albert Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 Dom, I wish I had some rock solid answers for you. We all ride a pretty scary rollercoaster, though. Somedays I feel just blissed out and others like I'll be lucky to be the gum on the bottom of someone's shoe. Truthfully, I think we each cling to whatever we can in order to make sense of our lives and our kids' lives. For me, the " battle " between good and evil seems to ring truer the longer I live. If you're interested, C.S. ' writings have been healing for me. Brennan Manning (The Wisdom of Tenderness) is also good. When my little brother died at 3 1/2, my parents found a great deal of comfort in Harold Kushner's " When Bad Things Happen to Good People. " I haven't read it yet. Some days I wonder if I'll ever feel like anything other than a walking broken heart. Others I'm okay. Sometimes I'm even doing very, very well. I wish I had something really healing, something permanent and profoundly soothing to offer you and each of us here. If you don't mind, I'll pray for your family -- for peace and continued pleasure in your sweet, smiley girl and for less rough times, more " ordinary " times. Blessings, mom to 5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2008 Report Share Posted February 15, 2008 Hi all. How can you qualify why things happen. My daughter was an olympian and so too is her sister. Field Hockey. A friend said the other day that Torin could not have a better parent than Berth because of the dedication it takes to succeed in sport has allowed her to force people to give the best to Torin. It seems to be fate that they bought a house, years ago, that is within walking distance of the 2 top deaf schools and a special kids kindy and pre school. Beth is like a terrier when it comes to getting thing for him, she only needs to find out about something and she is off like a rocket to learn more. A few months ago Torin lay on the floor and rocked his head from side to side. Then with all the work, suddenly could sit , now to watch his crawling around faster and faster, pulling himself up, Today he pulled up and stood just resting his good hand on my leg and looked around. His right side is improving slowly and the more he uses it the stronger it is getting. With his Cochlear he is even starting to make useful vocalizations. So we are hopeful of speach in years to come. dont't ever give up on these kids they can surprise you. a smile or a giggle, melts your heart. We are lucky, we know why Torin has his problems it was CMV when she was pregnant. But this is a 2 edged sword, she knows it is she fault that he was damaged. She does not talk about it but I know sometimes she crys inside because of this. Then gets on with what needs to be done. Well all of you look after yourselves so you can look after the kids. Grandma Carol, Torin 20 mths, PMG, hemiplagia, Deaf. My little red haired love _____ <http://promos.hotbar.com/promos/promodll.dll?RunPromo & El= & SG= & RAND=2771 & par tner=spamblockerutility> Upgrade Your Email - Click here! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2008 Report Share Posted February 16, 2008 We are at the other end of the spectum. According to Marz' MRI and Dr. Dobyns she should be only mildly impaired. The reality is she's severely mentally disabled and has Lennox Gastaut - a catastrophic epileptic syndrome. I hope my response isn't controversial but here goes. Long before Marz came into my life I'd had the opportunity to face the question; If there is a God why does He let bad things happen to good people? I'd lost my kind, loving, big brother when he was 21 years old, and the loss damn near killed me inside. Fortunately, I met someone who had an answer that worked for me; " God will take you through a multitude of experiences that are not meant for you. They are meant to make you more useful in His hands and so that you are understanding of what you come across in other souls " . What this meant to me was that, for whatever reason, my brother's death was part of God's plan. My choice now was to either have faith that God knew what He was doing and trust Him or be angry at God because He did a bad thing to a good person and had the nerve not to tell me why. I'm not here because I'm some bleeding heart that wanted to be a hero or score points with God by loving an imperfect child. I fell deeply in love with a man that I could not walk away from regardless of the baggage he came with (sorry to put it that way folks but come on who chooses this?). I wanted to run away screaming a million times, but I couldn't. I don't know why God chose this man for me to fall in love with or why he chose his daughter to have this affliction. I am not so self righteous to believe God brought us together because He thinks I'm a " special " person, strong enough to handle it or whatever. I don't feel compelled to come up with an excuse to explain why God does or doesn't do things. We all have speculated, but I have come to believe God doesn't make bad things happen as a punishment or lesson or because He thinks we are " special " people. Bad things happen for reasons that we don't understand and we may never understand in this life. In the great scheme of things I'm not so sure what we perceive as bad even is. I've come to believe that accepting God's will and not questioning it or justifying it, especially when it's unpleasant to us, is what faith really is. Penny - Step Mom to nela - 15 yo, Uniliateral PMG-PNH and LGS Chloe B wrote: My daughter Chloe who also has severe pmg is even less able than . She can move her limbs about but can not move around herself, or grasp anything, or talk or eat (she swallows but can not chew and so mainly tube fed) She does see and hear well however, but does not respond to say, her name. She may well look over in response to the noise but does not appear to understand what is said. I know this is going to be controversial to say on this group but pray?? If there is a God, why were our kids born like this? Dom, father to Chloe, aged 6 diffuse bilateral pmg, G tube, rotational osteotomy ops on each hip, epilepsy, cannot sit, walk, talk etc, however a happy smiley (most of the time) little girl Re: Serious PMG Dear , It is really hard to say this... but our son , who has severe PMG... has never developed the ability to crawl. But what you have to wrap your heart around is this... prayers for the best that she can do... that she will develop to her full God blessed potential. I used to prayer that someday would crawl, walk, talk, eat solid foods,.. but now.. we pray that will be blessed with the best that he can possibly be. NOW..dont be depressed by this... because here is what he can do!! He does not " crawl " but he can roll and wiggle and jiggle and move in seconds flat across any floor!.. He can walk, IN a specially developed walker, he has much improved use of his hands, he laughs and laughs and we have learned over the years to stop worrying about what he CAN NOT do... And be grateful...for what he can do. It is in that positive spirit... that these kids flourish. Just love her, pray for her doctors, pray for her therapists, pray for her little 19 month old body to be strong against adversity... But as you have read on these posts, motor skills are often very developmentally affected. I guess after 10 years.... we have a different perspective, but is getting stronger, and growing, and enjoying life as much as all of us...if not more. Despite all his overwhelming issues... he is an angel.... in how he has adapted to his disabilities. God bless you for reaching out. Look beyond the crawling... bless the heart and hope for the best..whatever God's plan may be. Sincerely, , Mom to , age 10... wrote: Hello everyone! I know I havn't not posted anything or responded to anyones post but I do read what you write and keep tabs on what's going on with everyone's little angle. I am writing this because our family needs as many prayers as possible. My niece has severe PMG. She is 19 months, doesn't walk, crawl, she is legally blind and deaf. She also doesn't have great head contral. She attends therapy three times a week and we have seen a small amount of improvement and she does have some head control now, but very small. Well, yesterday, the therapist told my mom (baby 's grandma) that will never be walk or crawl. Her brain is badly damaged to the point where they believe this is true. I believe in god and I believe that miracles can happen. So I am asking that everyone please pray for our little to one day be able to crawl. Even she never walks, just for her to crawl would be the happiest thing in the world to us. I am not sure if anyone else has a baby that is this seviere but it is very hard on all of us. She is the most beautiful baby and only has love to give. Someone told us once that God tends to make these speacial babys particularly beautiful (so not just our baby, but everyones specail baby) God creates just so perfectly. He doesn't make mistakes and we can't help but wonder how we got so lucky with a baby like her. I know she will require a lot of care esp. since she can't help herself. So I am starting a prayer chain. Please Please pray for our baby to one day crawl. Thank you so much. Auntie to Olivia Anne Petros Severe PMG In the middle of a difficulty lies opportunity. Einstein, Albert Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2008 Report Share Posted February 16, 2008 Grandma Carol, If you don't mind me asking......what tests did your daughter have to determine that she had CMV when she was pregnant? I question myself so many times on the " WHYS " ?? > > Hi all. How can you qualify why things happen. My daughter was an olympian > and so too is her sister. Field Hockey. A friend said the other day that > Torin could not have a better parent than Berth because of the dedication it > takes to succeed in sport has allowed her to force people to give the best > to Torin. It seems to be fate that they bought a house, years ago, that is > within walking distance of the 2 top deaf schools and a special kids kindy > and pre school. Beth is like a terrier when it comes to getting thing for > him, she only needs to find out about something and she is off like a rocket > to learn more. > A few months ago Torin lay on the floor and rocked his head from side to > side. Then with all the work, suddenly could sit , now to watch his crawling > around faster and faster, pulling himself up, Today he pulled up and stood > just resting his good hand on my leg and looked around. His right side is > improving slowly and the more he uses it the stronger it is getting. With > his Cochlear he is even starting to make useful vocalizations. So we are > hopeful of speach in years to come. > dont't ever give up on these kids they can surprise you. a smile or a > giggle, melts your heart. We are lucky, we know why Torin has his problems > it was CMV when she was pregnant. But this is a 2 edged sword, she knows it > is she fault that he was damaged. She does not talk about it but I know > sometimes she crys inside because of this. Then gets on with what needs to > be done. Well all of you look after yourselves so you can look after the > kids. > > Grandma Carol, Torin 20 mths, PMG, hemiplagia, Deaf. My little red haired > love > > _____ > > > <http://promos.hotbar.com/promos/promodll.dll? RunPromo & El= & SG= & RAND=2771 & par > tner=spamblockerutility> Upgrade Your Email - Click here! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2008 Report Share Posted February 16, 2008 What ever our beliefs are, we all have one thing in common. We love our kiddies and want the best for them. And the fact we can share our experiences where ever we are in the world is fantastic. Dom, father to Chloe, aged 6 diffuse bilateral pmg, G tube, rotational osteotomy ops on each hip, epilepsy, cannot sit, walk, talk etc, however a happy smiley (most of the time) little girl Re: Serious PMG Dear , It is really hard to say this... but our son , who has severe PMG... has never developed the ability to crawl. But what you have to wrap your heart around is this... prayers for the best that she can do... that she will develop to her full God blessed potential. I used to prayer that someday would crawl, walk, talk, eat solid foods,.. but now.. we pray that will be blessed with the best that he can possibly be. NOW..dont be depressed by this... because here is what he can do!! He does not " crawl " but he can roll and wiggle and jiggle and move in seconds flat across any floor!.. He can walk, IN a specially developed walker, he has much improved use of his hands, he laughs and laughs and we have learned over the years to stop worrying about what he CAN NOT do... And be grateful...for what he can do. It is in that positive spirit... that these kids flourish. Just love her, pray for her doctors, pray for her therapists, pray for her little 19 month old body to be strong against adversity... But as you have read on these posts, motor skills are often very developmentally affected. I guess after 10 years.... we have a different perspective, but is getting stronger, and growing, and enjoying life as much as all of us...if not more. Despite all his overwhelming issues... he is an angel.... in how he has adapted to his disabilities. God bless you for reaching out. Look beyond the crawling... bless the heart and hope for the best..whatever God's plan may be. Sincerely, , Mom to , age 10... wrote: Hello everyone! I know I havn't not posted anything or responded to anyones post but I do read what you write and keep tabs on what's going on with everyone's little angle. I am writing this because our family needs as many prayers as possible. My niece has severe PMG. She is 19 months, doesn't walk, crawl, she is legally blind and deaf. She also doesn't have great head contral. She attends therapy three times a week and we have seen a small amount of improvement and she does have some head control now, but very small. Well, yesterday, the therapist told my mom (baby 's grandma) that will never be walk or crawl. Her brain is badly damaged to the point where they believe this is true. I believe in god and I believe that miracles can happen. So I am asking that everyone please pray for our little to one day be able to crawl. Even she never walks, just for her to crawl would be the happiest thing in the world to us. I am not sure if anyone else has a baby that is this seviere but it is very hard on all of us. She is the most beautiful baby and only has love to give. Someone told us once that God tends to make these speacial babys particularly beautiful (so not just our baby, but everyones specail baby) God creates just so perfectly. He doesn't make mistakes and we can't help but wonder how we got so lucky with a baby like her. I know she will require a lot of care esp. since she can't help herself. So I am starting a prayer chain. Please Please pray for our baby to one day crawl. Thank you so much. Auntie to Olivia Anne Petros Severe PMG In the middle of a difficulty lies opportunity. Einstein, Albert Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2008 Report Share Posted February 16, 2008 , Not Grandma Carol, but I had a " torch titer " panel to rule out viral causes. The test included parvo, CMV, toxoplasmosis, and I don't remember what else. I don't know how they can tell about these things, but my exposure to whatever it was read as so " old " that they said it could not possibly have caused PMG in Quinn. Have you seen a geneticist? As a result of my visit, parental samples are being tested as part of Dr. Dobyns' study. Apparently we've ruled out all but the most obscure chances of genetic link? Or he's looking for something never seen before. It's been a while so I'm not exactly sure. I know that it's impossible to keep from the " whys " but don't let it wreck things for you. Easier said than done, of course, and most of us don't have more than occasional thoughts about this kind of stuff, but... Sometimes it's difficult, as with anything else, to manage. Sigh. Blessings to you (and hope this helps some -- I know I really appreciate the ongoing " conversation " here.) mom to 5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2008 Report Share Posted February 17, 2008 VERY GOOD EXPLANATION PENNY! I AGREE WITH YOUR FEELINGS 100%. I MYSELF CALL THESE TRAGEDIES " PRUNING BACK EXPERIENCES " . WHEN YOU CUT THE " ROSE " IT STINGS BUT FROM THAT " STING " FLOURISHES AN EVEN BIGGER BETTER STRONGER ROSE. AND SO IT GOES WITH HUMAN EXPERIENCES SUCH AS THE ONES WE HAVE GOING ON IN OUR LIVES WITH OUR SPECIAL KIDS. MY DAUGHTER SUFFERS WITH THE " WHY ME " THING AS WELL. I TELL HER I DON'T BELIEVE THAT GOD JUST PICKS OUT CERTAIN KIDS TO HAVE DISABILITIES ETC. IT JUST HAPPENS AND THEN HE GIVES US THE STRENGTH AND COURAGE TO BE THE BEST PARENTS/GRANDPARENTS WE CAN BE. I TOO HOPE THIS ISN'T TOO CONTROVERSIAL BUT I HAD TO EXPRESS MY FEELINGS IN THIS MATTER. BLESSING TO ALL OF THE WONDERFUL PARENTS OF OUR KIDS. BONNIE, GRANDMOTHER TO LINDSEY 5yo WITH SEVERE BI-LATERAL PMG) P.S. LINDSEY THIS WEEK IS IN DISNEY WORLD COMPLIMENTS OF KIDS WISH! I'M SO HAPPY FOR THEM. HER PICTURE WILL BE POSTED ON THEIR WEB SITE SOON. Penny Rubalcaba wrote: We are at the other end of the spectum. According to Marz' MRI and Dr. Dobyns she should be only mildly impaired. The reality is she's severely mentally disabled and has Lennox Gastaut - a catastrophic epileptic syndrome. I hope my response isn't controversial but here goes. Long before Marz came into my life I'd had the opportunity to face the question; If there is a God why does He let bad things happen to good people? I'd lost my kind, loving, big brother when he was 21 years old, and the loss damn near killed me inside. Fortunately, I met someone who had an answer that worked for me; " God will take you through a multitude of experiences that are not meant for you. They are meant to make you more useful in His hands and so that you are understanding of what you come across in other souls " . What this meant to me was that, for whatever reason, my brother's death was part of God's plan. My choice now was to either have faith that God knew what He was doing and trust Him or be angry at God because He did a bad thing to a good person and had the nerve not to tell me why. I'm not here because I'm some bleeding heart that wanted to be a hero or score points with God by loving an imperfect child. I fell deeply in love with a man that I could not walk away from regardless of the baggage he came with (sorry to put it that way folks but come on who chooses this?). I wanted to run away screaming a million times, but I couldn't. I don't know why God chose this man for me to fall in love with or why he chose his daughter to have this affliction. I am not so self righteous to believe God brought us together because He thinks I'm a " special " person, strong enough to handle it or whatever. I don't feel compelled to come up with an excuse to explain why God does or doesn't do things. We all have speculated, but I have come to believe God doesn't make bad things happen as a punishment or lesson or because He thinks we are " special " people. Bad things happen for reasons that we don't understand and we may never understand in this life. In the great scheme of things I'm not so sure what we perceive as bad even is. I've come to believe that accepting God's will and not questioning it or justifying it, especially when it's unpleasant to us, is what faith really is. Penny - Step Mom to nela - 15 yo, Uniliateral PMG-PNH and LGS Chloe B wrote: My daughter Chloe who also has severe pmg is even less able than . She can move her limbs about but can not move around herself, or grasp anything, or talk or eat (she swallows but can not chew and so mainly tube fed) She does see and hear well however, but does not respond to say, her name. She may well look over in response to the noise but does not appear to understand what is said. I know this is going to be controversial to say on this group but pray?? If there is a God, why were our kids born like this? Dom, father to Chloe, aged 6 diffuse bilateral pmg, G tube, rotational osteotomy ops on each hip, epilepsy, cannot sit, walk, talk etc, however a happy smiley (most of the time) little girl Re: Serious PMG Dear , It is really hard to say this... but our son , who has severe PMG... has never developed the ability to crawl. But what you have to wrap your heart around is this... prayers for the best that she can do... that she will develop to her full God blessed potential. I used to prayer that someday would crawl, walk, talk, eat solid foods,.. but now.. we pray that will be blessed with the best that he can possibly be. NOW..dont be depressed by this... because here is what he can do!! He does not " crawl " but he can roll and wiggle and jiggle and move in seconds flat across any floor!.. He can walk, IN a specially developed walker, he has much improved use of his hands, he laughs and laughs and we have learned over the years to stop worrying about what he CAN NOT do... And be grateful...for what he can do. It is in that positive spirit... that these kids flourish. Just love her, pray for her doctors, pray for her therapists, pray for her little 19 month old body to be strong against adversity... But as you have read on these posts, motor skills are often very developmentally affected. I guess after 10 years.... we have a different perspective, but is getting stronger, and growing, and enjoying life as much as all of us...if not more. Despite all his overwhelming issues... he is an angel.... in how he has adapted to his disabilities. God bless you for reaching out. Look beyond the crawling... bless the heart and hope for the best..whatever God's plan may be. Sincerely, , Mom to , age 10... wrote: Hello everyone! I know I havn't not posted anything or responded to anyones post but I do read what you write and keep tabs on what's going on with everyone's little angle. I am writing this because our family needs as many prayers as possible. My niece has severe PMG. She is 19 months, doesn't walk, crawl, she is legally blind and deaf. She also doesn't have great head contral. She attends therapy three times a week and we have seen a small amount of improvement and she does have some head control now, but very small. Well, yesterday, the therapist told my mom (baby 's grandma) that will never be walk or crawl. Her brain is badly damaged to the point where they believe this is true. I believe in god and I believe that miracles can happen. So I am asking that everyone please pray for our little to one day be able to crawl. Even she never walks, just for her to crawl would be the happiest thing in the world to us. I am not sure if anyone else has a baby that is this seviere but it is very hard on all of us. She is the most beautiful baby and only has love to give. Someone told us once that God tends to make these speacial babys particularly beautiful (so not just our baby, but everyones specail baby) God creates just so perfectly. He doesn't make mistakes and we can't help but wonder how we got so lucky with a baby like her. I know she will require a lot of care esp. since she can't help herself. So I am starting a prayer chain. Please Please pray for our baby to one day crawl. Thank you so much. Auntie to Olivia Anne Petros Severe PMG In the middle of a difficulty lies opportunity. Einstein, Albert Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.