Guest guest Posted December 5, 2004 Report Share Posted December 5, 2004 I have spoken to several moms recently who feel the same way as you expressed. There was a time that I too felt it might be best for Asenath to pass on to be with the Lord because every day was only pain for her and there were no smiles, no joy. Her migraines had taken everything good out of her life and we were in agony watching her suffer. Thankfully after finding Dr. Whiteman (our geneticist) we were able to control most of the migraines, got proper nutrition in her, and her life was totally changed. A couple of weeks ago Asenath had another migraine that lasted several days and was so severe she wouldn't do anything but moan and scream and sleep. We learned later a stroke also came with it, and it hurt so much to go through it all over again. To see her suffer and to not be able to do anything about it! To watch our children suffer has got to be one of the hardest things in the world to do. I cannot imagine what it is like to be without my child, and yet, when I see her struggle with severe pain, and it doesn't seem like it will ever end, I think our perspectives change as to what is best for our child. Thank you for sharing with us. I am sure it hard to watch him slowly slipping away and not being able to stop it and yet also wondering what is best for him now that he has come to this point in his life. You are a special mom, don't forget that. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Re: Does anyone else have a difficult time during the holidays? > > > Oh Boy what a loaded question !!!! Sorry But most of this is me > venting....... > > God blessed me with my Elijah 2-15-03 and in August(5months old) he > was diagnosed with Leigh's disease. Most of you know that children > with this illness have extreme brain damage and usally die within > 2years. At the time he was diagnosed my Eli was in very poor > condition and we thought it was going to happen very quick. We > prepared for him to have all of his firsts and only's. We accepted > the holidays as a full blessing of life. This year the feeling is so > much differant. As we have spent the last year watching Eli Grow and > look healthier then he did once his disease is still killing him > piece by piece. He is now unresponsive and the only thing that > pleases him is to be held. Even that is becoming hard as he is now > 42lbs. Last year he could still swing his arms in hopes to hit his > toy. Now there are no toys. Last year we bought him crib toys and it > was so much fun, hard but fun. I cry now as I think of the hurt on > my husbands face as we stay out of the stores this year unable to > find anything for his abilities. We are very tired, stress out and > sad. The holidays bring everything to the surface. I can talk to > people until I am blue and it wont take away the hurt. I have a > child who I love with my whole heart and he can never and will never > be able to see,smile,cry or do anything again. That is until he > reaches heaven. The pain of not knowing what he is feeling sometimes > is overwhelming. It has been a year of living each day for what it > brings and somewhat waiting for the enevitable. Odd that I don't > ever say that we are waiting for our child to die. Oh God does that > hurt. I know one of you once told me our children are not dying they > are living. Yes I feel that way but each of our children are > differant and mine is suffering. I would rather cut off my arm then > watch my Eli suffer so. > > I sometimes wish Elijah was just delayed or behind but the truth is > that he is dying and his brain is already gone. I know parts of him > remain. He seems to know voices and is comforted by touch. It just > hurts so. > > I find it interesting that the most wonderful thing in the christian > faith brings so much saddness. I guess it is the face that we have > all put on the christmas. > > Please, I hope you all don't get me wrong I LOVE MY SON > unconditionaly. It is true that I am sad about what he will never be > able to do but I would rather have him in my arms than anywhere > else. God has blessed me so. > > God bless you for loving your child > > Mother to my Elijah 21months old, Leigh's Disease > > > > > > > > My son is 5 1/2 now so you would think I'd handle the holidays > > better. But every year around this time I seem to get depressed. > My > > is severely delayed and I guess buying Xmas presents reminds > me > > that he hasn't really improved in 5 years. In fact each year he > > seems to develop more issues. He was born in September so that > first > > Xmas we were blissfully unaware of any problems. I also have an > > older son who may be autistic and/or bipolar(mito related?) He is > > becoming more of a behavioral problem lately. > > I normally am very grateful that my is in better health than > > some. I can't even imagine those who have lost their angels and > what > > they go through. But I am usually very aware of how fortunate we > > are. But this time of year is just really difficult for me. My > > husband is having a hard time being patient with me. He's such a > > wonderful husband & father and very calm and rational. But when > my > > mood is a little dark it seems to affect him as well. > > Don't get me wrong; I'm not lying in bed all day. I get up each > > morning and do my routine, I cooked Thanksgiving dinner & I helped > > decorate for Xmas already. But inside I'm just so sad. I call it > > being functionally depressed-LOL > > I've told my husband that my heart just aches for both my sons. > Any > > parent wants the best for their kids and it kills me that they > have > > so many issues. I mourn a little for the " normal " kids that they > > should have been. I also carry the guilt that their issues are my > > fault. I didn't do anything wrong but since I carried them I feel > > that I'm to blame. I don't say that so someone can absolve my > > guilt. I tell my husband that I will always feel a little > > responsible no matter what the docs say. > > I'm sorry if I made anyone else sad. I'm sure you all have bad > > days/weeks. I guess it helps to get it out. Thanks for > listening:) > > Blessings, > > > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2004 Report Share Posted December 5, 2004 I have spoken to several moms recently who feel the same way as you expressed. There was a time that I too felt it might be best for Asenath to pass on to be with the Lord because every day was only pain for her and there were no smiles, no joy. Her migraines had taken everything good out of her life and we were in agony watching her suffer. Thankfully after finding Dr. Whiteman (our geneticist) we were able to control most of the migraines, got proper nutrition in her, and her life was totally changed. A couple of weeks ago Asenath had another migraine that lasted several days and was so severe she wouldn't do anything but moan and scream and sleep. We learned later a stroke also came with it, and it hurt so much to go through it all over again. To see her suffer and to not be able to do anything about it! To watch our children suffer has got to be one of the hardest things in the world to do. I cannot imagine what it is like to be without my child, and yet, when I see her struggle with severe pain, and it doesn't seem like it will ever end, I think our perspectives change as to what is best for our child. Thank you for sharing with us. I am sure it hard to watch him slowly slipping away and not being able to stop it and yet also wondering what is best for him now that he has come to this point in his life. You are a special mom, don't forget that. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Re: Does anyone else have a difficult time during the holidays? > > > Oh Boy what a loaded question !!!! Sorry But most of this is me > venting....... > > God blessed me with my Elijah 2-15-03 and in August(5months old) he > was diagnosed with Leigh's disease. Most of you know that children > with this illness have extreme brain damage and usally die within > 2years. At the time he was diagnosed my Eli was in very poor > condition and we thought it was going to happen very quick. We > prepared for him to have all of his firsts and only's. We accepted > the holidays as a full blessing of life. This year the feeling is so > much differant. As we have spent the last year watching Eli Grow and > look healthier then he did once his disease is still killing him > piece by piece. He is now unresponsive and the only thing that > pleases him is to be held. Even that is becoming hard as he is now > 42lbs. Last year he could still swing his arms in hopes to hit his > toy. Now there are no toys. Last year we bought him crib toys and it > was so much fun, hard but fun. I cry now as I think of the hurt on > my husbands face as we stay out of the stores this year unable to > find anything for his abilities. We are very tired, stress out and > sad. The holidays bring everything to the surface. I can talk to > people until I am blue and it wont take away the hurt. I have a > child who I love with my whole heart and he can never and will never > be able to see,smile,cry or do anything again. That is until he > reaches heaven. The pain of not knowing what he is feeling sometimes > is overwhelming. It has been a year of living each day for what it > brings and somewhat waiting for the enevitable. Odd that I don't > ever say that we are waiting for our child to die. Oh God does that > hurt. I know one of you once told me our children are not dying they > are living. Yes I feel that way but each of our children are > differant and mine is suffering. I would rather cut off my arm then > watch my Eli suffer so. > > I sometimes wish Elijah was just delayed or behind but the truth is > that he is dying and his brain is already gone. I know parts of him > remain. He seems to know voices and is comforted by touch. It just > hurts so. > > I find it interesting that the most wonderful thing in the christian > faith brings so much saddness. I guess it is the face that we have > all put on the christmas. > > Please, I hope you all don't get me wrong I LOVE MY SON > unconditionaly. It is true that I am sad about what he will never be > able to do but I would rather have him in my arms than anywhere > else. God has blessed me so. > > God bless you for loving your child > > Mother to my Elijah 21months old, Leigh's Disease > > > > > > > > My son is 5 1/2 now so you would think I'd handle the holidays > > better. But every year around this time I seem to get depressed. > My > > is severely delayed and I guess buying Xmas presents reminds > me > > that he hasn't really improved in 5 years. In fact each year he > > seems to develop more issues. He was born in September so that > first > > Xmas we were blissfully unaware of any problems. I also have an > > older son who may be autistic and/or bipolar(mito related?) He is > > becoming more of a behavioral problem lately. > > I normally am very grateful that my is in better health than > > some. I can't even imagine those who have lost their angels and > what > > they go through. But I am usually very aware of how fortunate we > > are. But this time of year is just really difficult for me. My > > husband is having a hard time being patient with me. He's such a > > wonderful husband & father and very calm and rational. But when > my > > mood is a little dark it seems to affect him as well. > > Don't get me wrong; I'm not lying in bed all day. I get up each > > morning and do my routine, I cooked Thanksgiving dinner & I helped > > decorate for Xmas already. But inside I'm just so sad. I call it > > being functionally depressed-LOL > > I've told my husband that my heart just aches for both my sons. > Any > > parent wants the best for their kids and it kills me that they > have > > so many issues. I mourn a little for the " normal " kids that they > > should have been. I also carry the guilt that their issues are my > > fault. I didn't do anything wrong but since I carried them I feel > > that I'm to blame. I don't say that so someone can absolve my > > guilt. I tell my husband that I will always feel a little > > responsible no matter what the docs say. > > I'm sorry if I made anyone else sad. I'm sure you all have bad > > days/weeks. I guess it helps to get it out. Thanks for > listening:) > > Blessings, > > > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
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