Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 , I know the pain and uncertainty can be overwhleming at times. If there were any way to answer your questions, we would all sleep easier at night. I really wish there was something i could say or do that would ease your suffering right now. Every kid with mito is different, but yet we ARE all alike in that our kids mean the world to us. their lives may NOT be as long as any of us would like...but then again, that is the motto of the UMDF..."REdefining HOPE!" We never know how long we will have here on EARth with ANY of the people we love, mito affected or not. So if Nikki deoesn't fulfill all those dreams you have for her, you need to know it's still okay. If she goes to bed every night knowing that her Mommy loves her more than anything else in the world. then her life is full and rich and YOU, my friend, have done your job. I really know where you are with this, a i've walked in those shoes. Sending you a million hugs... ruth mito mom to Mitch (nearly 10) and Lexi (nearly 7) both mito affected and my treasures Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 Everyone hates getting a diagnoses. And with mito, most of us don't know for sure but all the data the doctors give us point us this direction. No one wants to be here. I'm glad your daughter looks normal and SO What if she get tired. Don't we all? However, because your daughter might have mito you will need to learn how to manage her energy. Just because she has mito doesn't mean that she won't live a long happy productive life. There are many adults with mito and by learning more now about how to live with the disease I'm sure your daughter will benefit. You may not push her as hard, give her frequent breaks -- it may take her longer to do her homework. No one can predict the future. Your daughter will write her own book-- it's up to her to determine what she's going to do with this knowledge. Maybe she'll see it as a challenge, something to overcome instead of a nightmare that she has to live with. Stop drinking and go to bed -- alcohol won't solve anything, this group will be here in the morning. Think good thoughts. Sue Ann Are we alike? I know this sounds terrible...perhaps it's the alcohol talking... Why am I here? My daughter has mito- (unspecified) doesn't that mean she's not like any one else? She looks normal-so; she gets tired- so; she dehydrates often. SO WHAT. I need to see her future--- My other daughter-she'll gradutate high school-go to college-She'll marry. Where will Nikki be? Who can tell me???? Will she ever grow up?? Will she make it till her high school graduation?? Tell me... Why are we here??? Where do I run to? Where can I go to escape? I don't want to be here... I want to wake tomorrow with all of this nightmare gone------------- Make it go away. I want to see her future......I can't. Where can I go? HELP Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 I'm sorry you're having a hard time with this right now. I know how hard the uncertainty can be... I've been there. I have always said that I'd be happy if I could just see in the future 10 years and know where we'll be. Then maybe I could prepare for it. The uncertainty is one of the hardest things we have to deal with. I know you have the strength to get through this. Please know that we are all here for you. I wish I knew what to say, as your e-mail sounds so much like what I've gone through. > > I know this sounds terrible...perhaps it's the alcohol talking... > Why am I here? My daughter has mito- (unspecified) doesn't that mean > she's not like any one else? She looks normal-so; she gets tired- > so; she dehydrates often. SO WHAT. > I need to see her future--- > My other daughter-she'll gradutate high school-go to college-She'll > marry. Where will Nikki be? Who can tell me???? Will she ever grow > up?? Will she make it till her high school graduation?? Tell me... > Why are we here??? > Where do I run to? Where can I go to escape? I don't want to be here... > I want to wake tomorrow with all of this nightmare gone------------- > Make it go away. I want to see her future......I can't. > Where can I go? HELP > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 , I, as well as everyone else on this list has shared the exact feelings you are feeling right now. Just be glad you have found this group. They are a wonderful support. No one can take away your pain and your grieving right now. No one can answer your questions. We have all been in the same dark place you are, most of us go there from time to time even after we have dealt with this monster for a while. Yes, your dreams for your child are changed. But you will dream again and you will find wonderment in the little things. Whoever thought a simple little smile could bring such joy to your day. It will, you will see. Please know that we are all here for you. We would love to hear more about your daughter. For me, it isn't my child, it is my beloved granddaughter, Audrey, age 3, who is so severly affected by Mito. We found out when she was 10 months old. They told us she would not see her second birthday. Then last January she was so ill they sent her home from the hospital and they said we would have her maybe another week. Boy were they wrong. In August she turned 3 and it was a glorious day. Maybe we will have her still with us for her 4th Birthday and maybe not, but one thing is for sure, she has touched and changed the lives of more people in her few years than I will touch in a lifetime. If only everyone could know someone like my Audrey, or Darla's girls, or Deb's , or Leah, , or all the others they would then understand the true meaning of love. These children give more of themselves daily and teach us that we have strength that we never knew we had. They teach us that it is the little things in life that are the important things. I hope we can become your friend and support. We want to be there for you, and we will be there for you. Thinking of you and your family, Kathy, grandma to Audrey, 3 years Gianino wrote: I know this sounds terrible...perhaps it's the alcohol talking...Why am I here? My daughter has mito- (unspecified) doesn't that meanshe's not like any one else? She looks normal-so; she gets tired-so; she dehydrates often. SO WHAT. I need to see her future---My other daughter-she'll gradutate high school-go to college-She'llmarry. Where will Nikki be? Who can tell me???? Will she ever growup?? Will she make it till her high school graduation?? Tell me...Why are we here???Where do I run to? Where can I go to escape? I don't want to be here...I want to wake tomorrow with all of this nightmare gone-------------Make it go away. I want to see her future......I can't.Where can I go? HELPPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2005 Report Share Posted January 8, 2005 Welcome Michele, i can feel your pain as i feel it everyday, you've come to the right place!!! Im 42 with adult onset mito, my son Matt is 8 and was born with mito, and high functioning autism-pdd. He is included in regular classes, hes a boyscout, and our family will be cheering him on next week at his 1st violin concert, hes a wonderful fisherman, good at checkers and chess, hes always ready to make ya laugh, when he knows ya just wannna cry, he is one of the most happies human beings ive ever known, he is selfless, caring and loving, and he is so loved!!! And did i mention when i grow up i want to be just like him!! So you see, the future will take care of itself, you just need to worry about the present, so you dont miss a precious moment of it with your children!! Stay in today!!! And i'll tell ya ive learned more here at this group than anywhere, and i get the most genuine support here because everyone here knows what we are going through, and for that i will be eternially gratefull!! Hope to hear your feeling more chipper in the morning, and i send you hugs!!!! Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2005 Report Share Posted January 8, 2005 Dear , Kathy said is so well. She is so right. We have all felt as angry , cheated and shocked as you are feeling now. You have every right to feel that way. Please give yourself time to absorb all of this. Sometimes the shock is so overwhelming and you just want to wake up from the nightmare.You will eventually adjust to new dream for your child and also grieve over the tremendous loss of your dreams for your child when they were born. You will fine joy in the simple things and learn to enjoy your child TODaY because every day will be its own miracle. I have already lost one child at age 8 and my other child, Leanna is almost 8. Leanna has the same prognosis and so every day with her is precious and I know in my heart that the awesome things she can do today (like walk or eat) may be gone tomorrow. I have lived it once and am constantly reminded over and over when she gets sick how quickly she can lose it all. The only way I stay sane is by taking it on ONE DAY at a time, literally. I will not lie to you and say it is easy. It is the hardest and most unfair thing on earth but you will be amazed at what you find yourself capable of when it comes to your child. You are also given the gift of realizing how precious your child is and probably enjoying them more than many parents do with their “normal” healthy children. Many of my friends with healthy children do not slow down enough to enjoy their kids because they are too busy doing things that do not matter in the end (like making more money than they need to survive) and always assume their child will be there tomorrow. The truth is no one is promised tomorrow, healthy or without mito. Children do die in car accidents etc. I always remind my friends of that because when they see Leanna, they see death, but it can also happen to them just as well. I treasure every day with leanna and I never treasure every day with Samya because with Samya I never knew she had a terminal disease and she left us in 33 days. I try hard not to think or worry about the future because it may not be there. In the beginning, my anger was so much and I spent so much energy grieving the loss of college, the losse of marriage for her, the loss of children for her and grandchildren for me. I realize I will never be a grandma and it hurts so much but eventually I learned to not dwell s much on what I will not have and enjoy what I have today. I wish you luck and I pray that you eventually will find a peace with this but I do understand how you feel. God bless you, Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.samyahaddad.com/.org/.net Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 From: kathy boone Sent: Friday, January 07, 2005 8:38 PM To: Mito Subject: Re: Are we alike? , I, as well as everyone else on this list has shared the exact feelings you are feeling right now. Just be glad you have found this group. They are a wonderful support. No one can take away your pain and your grieving right now. No one can answer your questions. We have all been in the same dark place you are, most of us go there from time to time even after we have dealt with this monster for a while. Yes, your dreams for your child are changed. But you will dream again and you will find wonderment in the little things. Whoever thought a simple little smile could bring such joy to your day. It will, you will see. Please know that we are all here for you. We would love to hear more about your daughter. For me, it isn't my child, it is my beloved granddaughter, Audrey, age 3, who is so severly affected by Mito. We found out when she was 10 months old. They told us she would not see her second birthday. Then last January she was so ill they sent her home from the hospital and they said we would have her maybe another week. Boy were they wrong. In August she turned 3 and it was a glorious day. Maybe we will have her still with us for her 4th Birthday and maybe not, but one thing is for sure, she has touched and changed the lives of more people in her few years than I will touch in a lifetime. If only everyone could know someone like my Audrey, or Darla's girls, or Deb's , or Leah, , or all the others they would then understand the true meaning of love. These children give more of themselves daily and teach us that we have strength that we never knew we had. They teach us that it is the little things in life that are the important things. I hope we can become your friend and support. We want to be there for you, and we will be there for you. Thinking of you and your family, Kathy, grandma to Audrey, 3 years Gianino wrote: I know this sounds terrible...perhaps it's the alcohol talking... Why am I here? My daughter has mito- (unspecified) doesn't that mean she's not like any one else? She looks normal-so; she gets tired- so; she dehydrates often. SO WHAT. I need to see her future--- My other daughter-she'll gradutate high school-go to college-She'll marry. Where will Nikki be? Who can tell me???? Will she ever grow up?? Will she make it till her high school graduation?? Tell me... Why are we here??? Where do I run to? Where can I go to escape? I don't want to be here... I want to wake tomorrow with all of this nightmare gone------------- Make it go away. I want to see her future......I can't. Where can I go? HELP Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2005 Report Share Posted January 8, 2005 Dear , Kathy said is so well. She is so right. We have all felt as angry , cheated and shocked as you are feeling now. You have every right to feel that way. Please give yourself time to absorb all of this. Sometimes the shock is so overwhelming and you just want to wake up from the nightmare.You will eventually adjust to new dream for your child and also grieve over the tremendous loss of your dreams for your child when they were born. You will fine joy in the simple things and learn to enjoy your child TODaY because every day will be its own miracle. I have already lost one child at age 8 and my other child, Leanna is almost 8. Leanna has the same prognosis and so every day with her is precious and I know in my heart that the awesome things she can do today (like walk or eat) may be gone tomorrow. I have lived it once and am constantly reminded over and over when she gets sick how quickly she can lose it all. The only way I stay sane is by taking it on ONE DAY at a time, literally. I will not lie to you and say it is easy. It is the hardest and most unfair thing on earth but you will be amazed at what you find yourself capable of when it comes to your child. You are also given the gift of realizing how precious your child is and probably enjoying them more than many parents do with their “normal” healthy children. Many of my friends with healthy children do not slow down enough to enjoy their kids because they are too busy doing things that do not matter in the end (like making more money than they need to survive) and always assume their child will be there tomorrow. The truth is no one is promised tomorrow, healthy or without mito. Children do die in car accidents etc. I always remind my friends of that because when they see Leanna, they see death, but it can also happen to them just as well. I treasure every day with leanna and I never treasure every day with Samya because with Samya I never knew she had a terminal disease and she left us in 33 days. I try hard not to think or worry about the future because it may not be there. In the beginning, my anger was so much and I spent so much energy grieving the loss of college, the losse of marriage for her, the loss of children for her and grandchildren for me. I realize I will never be a grandma and it hurts so much but eventually I learned to not dwell s much on what I will not have and enjoy what I have today. I wish you luck and I pray that you eventually will find a peace with this but I do understand how you feel. God bless you, Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.samyahaddad.com/.org/.net Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 From: kathy boone Sent: Friday, January 07, 2005 8:38 PM To: Mito Subject: Re: Are we alike? , I, as well as everyone else on this list has shared the exact feelings you are feeling right now. Just be glad you have found this group. They are a wonderful support. No one can take away your pain and your grieving right now. No one can answer your questions. We have all been in the same dark place you are, most of us go there from time to time even after we have dealt with this monster for a while. Yes, your dreams for your child are changed. But you will dream again and you will find wonderment in the little things. Whoever thought a simple little smile could bring such joy to your day. It will, you will see. Please know that we are all here for you. We would love to hear more about your daughter. For me, it isn't my child, it is my beloved granddaughter, Audrey, age 3, who is so severly affected by Mito. We found out when she was 10 months old. They told us she would not see her second birthday. Then last January she was so ill they sent her home from the hospital and they said we would have her maybe another week. Boy were they wrong. In August she turned 3 and it was a glorious day. Maybe we will have her still with us for her 4th Birthday and maybe not, but one thing is for sure, she has touched and changed the lives of more people in her few years than I will touch in a lifetime. If only everyone could know someone like my Audrey, or Darla's girls, or Deb's , or Leah, , or all the others they would then understand the true meaning of love. These children give more of themselves daily and teach us that we have strength that we never knew we had. They teach us that it is the little things in life that are the important things. I hope we can become your friend and support. We want to be there for you, and we will be there for you. Thinking of you and your family, Kathy, grandma to Audrey, 3 years Gianino wrote: I know this sounds terrible...perhaps it's the alcohol talking... Why am I here? My daughter has mito- (unspecified) doesn't that mean she's not like any one else? She looks normal-so; she gets tired- so; she dehydrates often. SO WHAT. I need to see her future--- My other daughter-she'll gradutate high school-go to college-She'll marry. Where will Nikki be? Who can tell me???? Will she ever grow up?? Will she make it till her high school graduation?? Tell me... Why are we here??? Where do I run to? Where can I go to escape? I don't want to be here... I want to wake tomorrow with all of this nightmare gone------------- Make it go away. I want to see her future......I can't. Where can I go? HELP Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2005 Report Share Posted January 9, 2005 , Sorry to be answering you so late with this. My daughter, is 20 years old. She has Mito Complex 1, along with a Carnitor defeciency. She has had this since birth. However, the specialists in their wisdom, diagnosed her with Low Functioning Autism at the ripe old age of eighteen months. has had many crashes, and illnesses. I could not get her diagnosed until 18 months ago, she had a biopsy, and she has been correctly diagnosed. Not that the diagnosis has made that much of an explanation, or lifted the shroud of mystery about her prognosis. I love every day, and celebrate every day with her as a gift. I protect her as best as I can. The seizures are more numerous, and fatigue has increased. But is a feisty spirit who is not about to let go. She is fighting this as hard as she can. She is in her last year of school. Right now, I am fighting for a placement in a private adult medical day care center for her. It looks good. So I figure she will have a place to go to. Take care of yourself. Easier said than done, I know. I remember thinking around the time of the diagnosis, "What did I do to cause this?" I know the answer today, nothing! Our kids, and loved ones have been loaned to us to show us unconditional love, acceptance, courage, humor. Hope this makes some sense. Sherry 's Mom Quote Link to comment Share on other sites More sharing options...
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