Guest guest Posted May 3, 1998 Report Share Posted May 3, 1998 , I will find the poem as quickly as I can. You take care of yourself and Jonah. Remember the angels have their arms wrapped around you both. Love, My son Jonah >> >> >> >From: shelley_lev@... >> > >> >Hello everyone, I hope you remember me, some of you who I have >>corresponded >>with have really been supportive during a tough time for us.I haven't >>posted >>for a while as Jonah has been quite ill.I am so frustrated and angry I >>don't >>even know what to do anymore.You may remember he was in hospital 2 months >>ago to get established on home parenteral nutrition, well the GI doctor I >>have been having trouble with decided to take him off the tpn and his iv >>carnitine after only 4 weeks.My son's pediatrician and neurometabolic docs >>disagreed but since Jonah was under the GI service at the time he had the >>final say.We all explained to this doc that Jonah has cyclic diarhhea and >>vomiting and goes down very quick.He had gained 4 pounds on the tpn and the >>carnitine had really improved his strength and health.TPN doesn't come >>without it's risks,infection and liver damage being the 2 worst, but the >>alternative for Jonah is starvation and dehydration.So anyway, Jonah came >>home and over the following two weeks he lost more and more weight and >>fluids until finally his metabolic doc said come back, we need to put him >>back on.I was so relieved!This was last friday.On Sunday his vomiting >>increased five fold and he went into a seizure and aspirated the vomit.I >>rushed him to emerg and he was taken care of and was actually doing okay by >>6pm.We waited another 6 hours to go to a room just for overnight >>observation >>and by 1 am he looked odd so the nurse called our pediatrician and he cam >>in >>to start an iv.When he attepted to do it Jonah didn't even respond, he had >>gone into a coma state.They rushed off blood work and it came back his >>electrolytes were very unbalanced and he had a sodium of 174.`176 is >>incompatible with life.They start flushing him with fluids and his rouses >>enough to start seizing and he had a 1.5 hour seizure.He just kept >>convulsing from there.They arranged for transfer to a bigger centre and >>intubated him.I was told he probably wasn't going to make it.I was reeling, >>I couldn't believe it.What had gone wrong?!!!He is now severly >>braindamaged, >>blind, seizing and in a great deal of pain.Just a week ago he was smiling, >>talking sitting up, eating and breaking in his first tooth.I was told that >>he dehydrated and lost a lot of free water from his system causing his >>sodium level to go up,(it eventually went to 198),and that the sodium >>wasn't >>processed through properly because of his mito disorder.If he had stayed on >>tpn this would have not happened, so I am wanting to really hurt that gi >>doc.He will not want to run into me right now.Has anyone else experienced >>or >>heard of severe electrolyte problems in mito children, we need some more >>light shed on this.I have lost my son due to something that could have been >>prevented.I just feel so helpless and I don't know if I can handle this >>one.Jonah has always made it easier for people around him to accept his >>illness, because he was so happy, vibrant, social and bright little guy, >>and >>now that is gone and what do we do? Thanks for listening. >>,mom to an angel. >> > >> >------------------------------------------------------------------------ >> >Has ONElist changed your life? >> >http://www.ONElist.com >> >Visit our homepage and share with us your experiences at ONElist of the >>Week! >> >------------------------------------------------------------------------ >> >Brought to you by www.imdn.org - an on-line support group for those >>affected by mitochondrial disease. >> > >> >> >>------------------------------------------------------------------------ >>G-Shock Sports Watch ** NOW JUST $59.95 ** SHIPPING INCLUDED >>Built Tough, Built Cool! Full of Features! Electro Luminescent, Alarm >>1/100th of Second Stopwatch, 12/24 Hour, Great for Sports, and more! >> http://www.onelist.com/ad/shoptheglobe11 >>------------------------------------------------------------------------ >>Brought to you by www.imdn.org - an on-line support group for those >>affected by mitochondrial disease. > > >------------------------------------------------------------------------ >Have you visited the new ONElist home page lately? >http://www.ONElist.com >ONElist: The Leading e-mail list and community service on the Internet! >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 1999 Report Share Posted May 2, 1999 Hello everyone, I hope you remember me, some of you who I have corresponded with have really been supportive during a tough time for us.I haven't posted for a while as Jonah has been quite ill.I am so frustrated and angry I don't even know what to do anymore.You may remember he was in hospital 2 months ago to get established on home parenteral nutrition, well the GI doctor I have been having trouble with decided to take him off the tpn and his iv carnitine after only 4 weeks.My son's pediatrician and neurometabolic docs disagreed but since Jonah was under the GI service at the time he had the final say.We all explained to this doc that Jonah has cyclic diarhhea and vomiting and goes down very quick.He had gained 4 pounds on the tpn and the carnitine had really improved his strength and health.TPN doesn't come without it's risks,infection and liver damage being the 2 worst, but the alternative for Jonah is starvation and dehydration.So anyway, Jonah came home and over the following two weeks he lost more and more weight and fluids until finally his metabolic doc said come back, we need to put him back on.I was so relieved!This was last friday.On Sunday his vomiting increased five fold and he went into a seizure and aspirated the vomit.I rushed him to emerg and he was taken care of and was actually doing okay by 6pm.We waited another 6 hours to go to a room just for overnight observation and by 1 am he looked odd so the nurse called our pediatrician and he cam in to start an iv.When he attepted to do it Jonah didn't even respond, he had gone into a coma state.They rushed off blood work and it came back his electrolytes were very unbalanced and he had a sodium of 174.`176 is incompatible with life.They start flushing him with fluids and his rouses enough to start seizing and he had a 1.5 hour seizure.He just kept convulsing from there.They arranged for transfer to a bigger centre and intubated him.I was told he probably wasn't going to make it.I was reeling, I couldn't believe it.What had gone wrong?!!!He is now severly braindamaged, blind, seizing and in a great deal of pain.Just a week ago he was smiling, talking sitting up, eating and breaking in his first tooth.I was told that he dehydrated and lost a lot of free water from his system causing his sodium level to go up,(it eventually went to 198),and that the sodium wasn't processed through properly because of his mito disorder.If he had stayed on tpn this would have not happened, so I am wanting to really hurt that gi doc.He will not want to run into me right now.Has anyone else experienced or heard of severe electrolyte problems in mito children, we need some more light shed on this.I have lost my son due to something that could have been prevented.I just feel so helpless and I don't know if I can handle this one.Jonah has always made it easier for people around him to accept his illness, because he was so happy, vibrant, social and bright little guy, and now that is gone and what do we do? Thanks for listening. ,mom to an angel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 1999 Report Share Posted May 2, 1999 Thank you for your kind letter.I know I should be more hopeful, I just feel kind of numb now.It is hard for me to even look at him...it hurts too much.I miss my little boy,I miss so deeply that I want to scream.I would give my life to see him smile or kiss me just one more time.I have noone here to talk to who can relate and I'm not sure I want to be around too many people now anyway.I would like the poem if you could find it.Take care. > >Reply-To: Mitoonelist >To: <Mitoonelist> >Subject: Re: My son Jonah >Date: Sat, 2 May 1998 10:43:19 -0700 > > > >, How devastating for you all. Yes, I would go after that Dr. Maybe >they will start keeping better informed, maybe they will try to keep up >more >on the mito issues which are not as rare as they all seem to think. >I think keeping the electrolytes balanced is difficult for mito patients >which is why we have a hard time with extreme heat and fevers and vomiting >etc. I think even a small imbalance is very difficult for us to handle >where >the normal person could roll with it. The medical field needs to recognize >this and we need help understanding and dealing with it. >We need a handbook of possible problems and things to try and when to get >help. >Like my 2 yr old grandson spiked a 106 fever the other day and within hours >was pretty much OK again. Shenan has told the Dr.s her 2 kids go to 108 and >even the suppositories don't bring it down until it suddenly comes down on >it's own. They have a hard time believing it even when they see it! >I am so very very sorry for your little Jonah. I wish I knew something >brilliantly comforting to say to you. I honestly know how it feels as my >son >died at age 3 and they did a trach and brought him back and told me if he >lived he would be severely braindamaged. I will never forget that long >anguished night and the following 3 days while we waited. >In our case he pulled thru and told us about going to heaven and being told >to return here. He knew all kinds of new words and turned out to be our >gifted student. He was legally dead for over 9 minutes. >I guess what I'm trying to say is I believe God has a purpose in all He >does >so try to hang on and let His peace come into your soul and some reason >will >reveal itself one day, if not on this earth, then in the life to come. >There is a poem about God weaving light and dark threads and how we don't >understand them now but that both are needful to make the tapestry >beautiful. >I send you love and understanding in your tears. If you want a copy of the >poem I will find it for you. Love, S. > > My son Jonah > > > >From: shelley_lev@... > > > >Hello everyone, I hope you remember me, some of you who I have >corresponded >with have really been supportive during a tough time for us.I haven't >posted >for a while as Jonah has been quite ill.I am so frustrated and angry I >don't >even know what to do anymore.You may remember he was in hospital 2 months >ago to get established on home parenteral nutrition, well the GI doctor I >have been having trouble with decided to take him off the tpn and his iv >carnitine after only 4 weeks.My son's pediatrician and neurometabolic docs >disagreed but since Jonah was under the GI service at the time he had the >final say.We all explained to this doc that Jonah has cyclic diarhhea and >vomiting and goes down very quick.He had gained 4 pounds on the tpn and the >carnitine had really improved his strength and health.TPN doesn't come >without it's risks,infection and liver damage being the 2 worst, but the >alternative for Jonah is starvation and dehydration.So anyway, Jonah came >home and over the following two weeks he lost more and more weight and >fluids until finally his metabolic doc said come back, we need to put him >back on.I was so relieved!This was last friday.On Sunday his vomiting >increased five fold and he went into a seizure and aspirated the vomit.I >rushed him to emerg and he was taken care of and was actually doing okay by >6pm.We waited another 6 hours to go to a room just for overnight >observation >and by 1 am he looked odd so the nurse called our pediatrician and he cam >in >to start an iv.When he attepted to do it Jonah didn't even respond, he had >gone into a coma state.They rushed off blood work and it came back his >electrolytes were very unbalanced and he had a sodium of 174.`176 is >incompatible with life.They start flushing him with fluids and his rouses >enough to start seizing and he had a 1.5 hour seizure.He just kept >convulsing from there.They arranged for transfer to a bigger centre and >intubated him.I was told he probably wasn't going to make it.I was reeling, >I couldn't believe it.What had gone wrong?!!!He is now severly >braindamaged, >blind, seizing and in a great deal of pain.Just a week ago he was smiling, >talking sitting up, eating and breaking in his first tooth.I was told that >he dehydrated and lost a lot of free water from his system causing his >sodium level to go up,(it eventually went to 198),and that the sodium >wasn't >processed through properly because of his mito disorder.If he had stayed on >tpn this would have not happened, so I am wanting to really hurt that gi >doc.He will not want to run into me right now.Has anyone else experienced >or >heard of severe electrolyte problems in mito children, we need some more >light shed on this.I have lost my son due to something that could have been >prevented.I just feel so helpless and I don't know if I can handle this >one.Jonah has always made it easier for people around him to accept his >illness, because he was so happy, vibrant, social and bright little guy, >and >now that is gone and what do we do? Thanks for listening. >,mom to an angel. > > > >------------------------------------------------------------------------ > >Has ONElist changed your life? > >http://www.ONElist.com > >Visit our homepage and share with us your experiences at ONElist of the >Week! > >------------------------------------------------------------------------ > >Brought to you by www.imdn.org - an on-line support group for those >affected by mitochondrial disease. > > > > >------------------------------------------------------------------------ >G-Shock Sports Watch ** NOW JUST $59.95 ** SHIPPING INCLUDED >Built Tough, Built Cool! Full of Features! Electro Luminescent, Alarm >1/100th of Second Stopwatch, 12/24 Hour, Great for Sports, and more! > http://www.onelist.com/ad/shoptheglobe11 >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those >affected by mitochondrial disease. 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Guest guest Posted May 2, 1999 Report Share Posted May 2, 1999 Thanks for your letter.What electrolyte problem did your son have, and has he recuperated? I now have a whole new respect for electrolytes an I am about to go and search the net for info on high sodium levels.I just don't know how to stay positive this time.Jonah has spent most of his 21 months in hospitals and has had many scary icu experiences, but he always remained my happy, social and loving little boy....but now there's nothing and what do I do? >From: KCorley309@... >Reply-To: Mitoonelist >To: Mitoonelist >Subject: Re: My son Jonah >Date: Sun, 2 May 1999 17:38:27 EDT > >From: KCorley309@... > > - > >I am so very very very sorry. I wish so very much that there was something >I >could say that would make things different for you. I know that in >November, >when was terribly sick, what would have been a slight imbalance in his >electrolytes caused him to go into status . . . having one seizure after >another . . . until finally ativan and tegretol got things under control. >I >wish I knew more about electrolytes and mito to help you . . . maybe others >will be able to give you more of the information you have requested. You >and >Jonah will be in my thoughts and prayers. > >Kathy >mom to and > >------------------------------------------------------------------------ >Start a new hobby. Meet a new friend. >http://www.onelist.com >ONElist: The leading provider of free e-mail list services! >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those >affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 1999 Report Share Posted May 2, 1999 Hello Lynne and thanks for your encouragement.I wish I myself had known more about electrolyte risks with a mito disorder so I could hae fought harder for Jonah to have the tpn continued.It had never been mentioned me as a risk, nor had I read anything about it.It is hard to believe that somehting small like sodium could do so much damage isn't it?I am glad I cam on the list today, it's good to get it out...I just wish I had some answers, and where to go from here. F Seear " >Reply-To: Mitoonelist >To: <Mitoonelist> >Subject: Re: My son Jonah >Date: Mon, 3 May 1999 10:04:14 +1000 > > > >Oh my God what a devastating and tragic experience. I am so very , >very sorry that this has happened to Jonah. I hardly know what to say, and >yet I should because I too have lost a precious child to medical ignorance >and mismanagement of mitochondrial disease. Its just that words seem so >empty and inadequate at a time like this. > >It is, or should be, well known, that people with mitochondrial disease are >at huge risk from electrolyte disturbances and the metabolic derangements >that can result from them. Your doctor's action seems indefensible to me. > >I will pray for strength for you and a miracle for Jonah. Please keep in >touch. > >Lynne >(Mummy of Angus, nearly 7, oxphos disorder, and Ally, forever 4, in heaven >due to depakote toxicity) > My son Jonah > > > >From: shelley_lev@... > > > >Hello everyone, I hope you remember me, some of you who I have >corresponded >with have really been supportive during a tough time for us.I haven't >posted >for a while as Jonah has been quite ill.I am so frustrated and angry I >don't >even know what to do anymore.You may remember he was in hospital 2 months >ago to get established on home parenteral nutrition, well the GI doctor I >have been having trouble with decided to take him off the tpn and his iv >carnitine after only 4 weeks.My son's pediatrician and neurometabolic docs >disagreed but since Jonah was under the GI service at the time he had the >final say.We all explained to this doc that Jonah has cyclic diarhhea and >vomiting and goes down very quick.He had gained 4 pounds on the tpn and the >carnitine had really improved his strength and health.TPN doesn't come >without it's risks,infection and liver damage being the 2 worst, but the >alternative for Jonah is starvation and dehydration.So anyway, Jonah came >home and over the following two weeks he lost more and more weight and >fluids until finally his metabolic doc said come back, we need to put him >back on.I was so relieved!This was last friday.On Sunday his vomiting >increased five fold and he went into a seizure and aspirated the vomit.I >rushed him to emerg and he was taken care of and was actually doing okay by >6pm.We waited another 6 hours to go to a room just for overnight >observation >and by 1 am he looked odd so the nurse called our pediatrician and he cam >in >to start an iv.When he attepted to do it Jonah didn't even respond, he had >gone into a coma state.They rushed off blood work and it came back his >electrolytes were very unbalanced and he had a sodium of 174.`176 is >incompatible with life.They start flushing him with fluids and his rouses >enough to start seizing and he had a 1.5 hour seizure.He just kept >convulsing from there.They arranged for transfer to a bigger centre and >intubated him.I was told he probably wasn't going to make it.I was reeling, >I couldn't believe it.What had gone wrong?!!!He is now severly >braindamaged, >blind, seizing and in a great deal of pain.Just a week ago he was smiling, >talking sitting up, eating and breaking in his first tooth.I was told that >he dehydrated and lost a lot of free water from his system causing his >sodium level to go up,(it eventually went to 198),and that the sodium >wasn't >processed through properly because of his mito disorder.If he had stayed on >tpn this would have not happened, so I am wanting to really hurt that gi >doc.He will not want to run into me right now.Has anyone else experienced >or >heard of severe electrolyte problems in mito children, we need some more >light shed on this.I have lost my son due to something that could have been >prevented.I just feel so helpless and I don't know if I can handle this >one.Jonah has always made it easier for people around him to accept his >illness, because he was so happy, vibrant, social and bright little guy, >and >now that is gone and what do we do? Thanks for listening. >,mom to an angel. > > > >------------------------------------------------------------------------ > >Has ONElist changed your life? > >http://www.ONElist.com > >Visit our homepage and share with us your experiences at ONElist of the >Week! > >------------------------------------------------------------------------ > >Brought to you by www.imdn.org - an on-line support group for those >affected by mitochondrial disease. > > >------------------------------------------------------------------------ >Did you know that ONElist now offers the richest set of >group communications tools on the Internet? >http://www.onelist.com >Check out our homepage for details on these new tools! >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those >affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 1999 Report Share Posted May 2, 1999 - I am so very very very sorry. I wish so very much that there was something I could say that would make things different for you. I know that in November, when was terribly sick, what would have been a slight imbalance in his electrolytes caused him to go into status . . . having one seizure after another . . . until finally ativan and tegretol got things under control. I wish I knew more about electrolytes and mito to help you . . . maybe others will be able to give you more of the information you have requested. You and Jonah will be in my thoughts and prayers. Kathy mom to and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 1999 Report Share Posted May 2, 1999 In a message dated 5/2/99 7:43:12 PM Eastern Daylight Time, shelley_lev@... writes: << Thanks for your letter.What electrolyte problem did your son have, and has he recuperated? I now have a whole new respect for electrolytes an I am about to go and search the net for info on high sodium levels.I just don't know how to stay positive this time.Jonah has spent most of his 21 months in hospitals and has had many scary icu experiences, but he always remained my happy, social and loving little boy....but now there's nothing and what do I do? >> - My son had a diarrhea/vomitting illness (only he cannot vomit due to a fundoplication). He had been very sick for several days, and was not even tolerating pedialyte. He had a series of seizures. After the first one, the pediatrician ordered electrolytes, and I was told they were normal. Recently, when had our first consult with a mito doc, he mentioned that he noticed that 's labs have been normal on all occasions except for the one time his CO2 was low and electrolytes were off. I didn't know what he was talking about because I had been told they were normal. (BTW, all the other labs were taken at times when was stable, not when he was in crisis.) I discussed this discrepancy with 's pediatrician. She told me that while his magnesium was a little high, and his CO2 was a little low, that they were not so far out of range that it would be considered a concern. 's CO2 was 18 with a normal range of 22 - 35. I cannot remember the exact normal range for the magnesium, but he was just a tiny bit above normal. When I discussed what was going on with at the time these labs were drawn with the mito doc, he said: " Interesting . . . so he WAS acidotic. " came home from the hospital after staying the night. He had a rough week . . . still sick with gastroenteritis, more trouble with his button. But, he did recover. That was several months ago. I need to add that does not have a confirmed diagnosis. We are still awaiting insurance approval for his muscle biopsy. However, the mito doc felt there was " compelling evidence to suggest " that had an OxPhos disorder. Again, I am so very sorry for what has happened to you and to Jonah. I can only guess how difficult it must be for you right now. I will keep you and Jonah in my prayers. Kathy mom to and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 1999 Report Share Posted May 3, 1999 Oh my God what a devastating and tragic experience. I am so very , very sorry that this has happened to Jonah. I hardly know what to say, and yet I should because I too have lost a precious child to medical ignorance and mismanagement of mitochondrial disease. Its just that words seem so empty and inadequate at a time like this. It is, or should be, well known, that people with mitochondrial disease are at huge risk from electrolyte disturbances and the metabolic derangements that can result from them. Your doctor's action seems indefensible to me. I will pray for strength for you and a miracle for Jonah. Please keep in touch. Lynne (Mummy of Angus, nearly 7, oxphos disorder, and Ally, forever 4, in heaven due to depakote toxicity) My son Jonah >From: shelley_lev@... > >Hello everyone, I hope you remember me, some of you who I have corresponded with have really been supportive during a tough time for us.I haven't posted for a while as Jonah has been quite ill.I am so frustrated and angry I don't even know what to do anymore.You may remember he was in hospital 2 months ago to get established on home parenteral nutrition, well the GI doctor I have been having trouble with decided to take him off the tpn and his iv carnitine after only 4 weeks.My son's pediatrician and neurometabolic docs disagreed but since Jonah was under the GI service at the time he had the final say.We all explained to this doc that Jonah has cyclic diarhhea and vomiting and goes down very quick.He had gained 4 pounds on the tpn and the carnitine had really improved his strength and health.TPN doesn't come without it's risks,infection and liver damage being the 2 worst, but the alternative for Jonah is starvation and dehydration.So anyway, Jonah came home and over the following two weeks he lost more and more weight and fluids until finally his metabolic doc said come back, we need to put him back on.I was so relieved!This was last friday.On Sunday his vomiting increased five fold and he went into a seizure and aspirated the vomit.I rushed him to emerg and he was taken care of and was actually doing okay by 6pm.We waited another 6 hours to go to a room just for overnight observation and by 1 am he looked odd so the nurse called our pediatrician and he cam in to start an iv.When he attepted to do it Jonah didn't even respond, he had gone into a coma state.They rushed off blood work and it came back his electrolytes were very unbalanced and he had a sodium of 174.`176 is incompatible with life.They start flushing him with fluids and his rouses enough to start seizing and he had a 1.5 hour seizure.He just kept convulsing from there.They arranged for transfer to a bigger centre and intubated him.I was told he probably wasn't going to make it.I was reeling, I couldn't believe it.What had gone wrong?!!!He is now severly braindamaged, blind, seizing and in a great deal of pain.Just a week ago he was smiling, talking sitting up, eating and breaking in his first tooth.I was told that he dehydrated and lost a lot of free water from his system causing his sodium level to go up,(it eventually went to 198),and that the sodium wasn't processed through properly because of his mito disorder.If he had stayed on tpn this would have not happened, so I am wanting to really hurt that gi doc.He will not want to run into me right now.Has anyone else experienced or heard of severe electrolyte problems in mito children, we need some more light shed on this.I have lost my son due to something that could have been prevented.I just feel so helpless and I don't know if I can handle this one.Jonah has always made it easier for people around him to accept his illness, because he was so happy, vibrant, social and bright little guy, and now that is gone and what do we do? Thanks for listening. ,mom to an angel. > >------------------------------------------------------------------------ >Has ONElist changed your life? >http://www.ONElist.com >Visit our homepage and share with us your experiences at ONElist of the Week! >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 1999 Report Share Posted May 3, 1999 Sherri, Please know that my thoughts and prayers are with you. I am so saddened by what you and your little boy have gone thru. Please know that we are here for you. I am so sorry for all that has happened. Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 1999 Report Share Posted May 3, 1999 Sherri, Please know that my thoughts and prayers are with you. I am so saddened by what you and your little boy have gone thru. Please know that we are here for you. I am so sorry for all that has happened. Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 1999 Report Share Posted May 3, 1999 In a message dated 99-05-02 09:47:16 EDT, you write: << Jonah has always made it easier for people around him to accept his illness, because he was so happy, vibrant, social and bright little guy, and now that is gone and what do we do? Thanks for listening. ,mom to an angel. >> Dear : Boy, I can't immagine how you are even able to write such a cohearent e-mail after your experence with Jonah. My heart and prayers are with you! I am afraid that I have not experenced what Jonah has been through, but I know there are many wise parents here on the MitoLIst that may be able to help you through this. I CAN speak from a mothers' view and tell you that Jonah is still Jonah in spirit, and even though he may not respond the same as he did before these events, he still has much to offer all who serve him. There is much to be learned from the simple acts of serving someone who is unable to respond. There are levils of responce that we (experencing this life on earth) are not prevy to. This does not negate your grief however, and I can only offer you my cyber-sholder, heart, and real prayers. I am so sorry that you must go through this. I don't quite know what else to say. Please keep us informed, and welcome back to the List... you have been missed! Lynnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 1999 Report Share Posted May 3, 1999 In a message dated 99-05-02 09:47:16 EDT, you write: << Jonah has always made it easier for people around him to accept his illness, because he was so happy, vibrant, social and bright little guy, and now that is gone and what do we do? Thanks for listening. ,mom to an angel. >> Dear : Boy, I can't immagine how you are even able to write such a cohearent e-mail after your experence with Jonah. My heart and prayers are with you! I am afraid that I have not experenced what Jonah has been through, but I know there are many wise parents here on the MitoLIst that may be able to help you through this. I CAN speak from a mothers' view and tell you that Jonah is still Jonah in spirit, and even though he may not respond the same as he did before these events, he still has much to offer all who serve him. There is much to be learned from the simple acts of serving someone who is unable to respond. There are levils of responce that we (experencing this life on earth) are not prevy to. This does not negate your grief however, and I can only offer you my cyber-sholder, heart, and real prayers. I am so sorry that you must go through this. I don't quite know what else to say. Please keep us informed, and welcome back to the List... you have been missed! Lynnie Quote Link to comment Share on other sites More sharing options...
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