Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 Hi everyone, I just need to vent today with some families that know and understand what my family is going through. It has been a couple months since I posted anything but I have been avoiding all contact with family and friends as they all just don't seem to understand or they tippy-toe around us. I have two beautiful daughters, (11) and my Kay (14). For some odd reason or fate, Kayla was diagnosed with this Mitochondrial disorder, Complex I and IV, in January 2004. Kay was able to walk up until September 2004 and now relies on a wheelchair to get around; she can still walk a bit but with assistance. I encourage her everyday to continue to walk...walk through the pain/weakness in her little legs. I am the primary person in Kay's life, especially when it comes to appointments and supporting her and I have been dealing with this on my own but I am at the end of my rope with doctors and appointments and not getting anywhere. I sympathize with the families out there who have lost a child to this disease and I thank god everyday that Kay has not reached that point. Still, it is hard to sit by and watch your own child struggle with the everyday stress she must go through; knowing she just cannot get up and walk again (right now); how she has to watch her friends and family meander around her while she sits. I have to admit though that I have raised an amazing daughter as through all this, she can still keep a smile on her beautiful little face, she has a great sense of humour, I love to watch her couch dance and sometimes I hold her 5'2 " body in my arms and dance with her. She gives me such strength!!!!!!!! I know doctor's cannot save the world, but why do they have to take their sweet time finding out exactly what is wrong with our children. I think that causes more stress on them than the actual disease/disorder itself. Our dilemma in the last few months has been Kay's hemoglobin level keeps dropping and has had two transfusions in three months and they can't figure out why. We live in the beautiful Fraser Valley in British Columbia, I have left my job to look after Kay and now due to the costs of living we have to move north to where it is more affordable to live with one income. Well, I am just rambling and venting. Just some words of support or encouragement are what I need at this time as I am here with Kay packing for our move; my husband and other daughter have already moved. Anyhow, you all have a great day and I hope and pray this gets easier for us. Hugs ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 It sounds like you're going through a hard time right now. I know it can be so hard because others just don't know/understand what it's like. I hope the doctors figure things out soon and that they can help. You will get through this because you're a strong woman who loves her daughters, hang in there. We are also trying to get ready to move, we have to sell this house and move into a smaller one that we can afford on one income. Stacey Hi everyone, I just need to vent today with some families that know and understand what my family is going through. It has been a couple months since I posted anything but I have been avoiding all contact with family and friends as they all just don't seem to understand or they tippy-toe around us. I have two beautiful daughters, (11) and my Kay (14). For some odd reason or fate, Kayla was diagnosed with this Mitochondrial disorder, Complex I and IV, in January 2004. Kay was able to walk up until September 2004 and now relies on a wheelchair to get around; she can still walk a bit but with assistance. I encourage her everyday to continue to walk...walk through the pain/weakness in her little legs. I am the primary person in Kay's life, especially when it comes to appointments and supporting her and I have been dealing with this on my own but I am at the end of my rope with doctors and appointments and not getting anywhere. I sympathize with the families out there who have lost a child to this disease and I thank god everyday that Kay has not reached that point. Still, it is hard to sit by and watch your own child struggle with the everyday stress she must go through; knowing she just cannot get up and walk again (right now); how she has to watch her friends and family meander around her while she sits. I have to admit though that I have raised an amazing daughter as through all this, she can still keep a smile on her beautiful little face, she has a great sense of humour, I love to watch her couch dance and sometimes I hold her 5'2 " body in my arms and dance with her. She gives me such strength!!!!!!!! I know doctor's cannot save the world, but why do they have to take their sweet time finding out exactly what is wrong with our children. I think that causes more stress on them than the actual disease/disorder itself. Our dilemma in the last few months has been Kay's hemoglobin level keeps dropping and has had two transfusions in three months and they can't figure out why. We live in the beautiful Fraser Valley in British Columbia, I have left my job to look after Kay and now due to the costs of living we have to move north to where it is more affordable to live with one income. Well, I am just rambling and venting. Just some words of support or encouragement are what I need at this time as I am here with Kay packing for our move; my husband and other daughter have already moved. Anyhow, you all have a great day and I hope and pray this gets easier for us. Hugs ) Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 I know exactly how you are feeling right now. For the most part I always feel like I am fighting Sophie's doctors instead of working with them to help her. I think some doctors really do care but this disorder is a 9 - 5 thing for them. We live it 24hrs a day. They just don't realize the impact this has on people's lives. You will be in my prayers. Congratulations on raising such a strong, beautiful, brave girl! Meagan, Mom to Sophia (11 months) www.caringbridge.org/ky/sophiesong__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 Hello....I can kind of understand what you are going through-having it happen to me with mobility problems...It is most diificult in that people do not understand and most of the time they will not allow themselves to get closer. It seems you have a very adoring daughter who refuses to give up the fight. Determination is the key to living despite the obstacles. I hope this gives you some uplifting..... Try to make the most of each day. Embrace it... Praying for you and your family. Anncestmoi1164 wrote: Hi everyone, I just need to vent today with some families that know and understand what my family is going through. It has been a couple months since I posted anything but I have been avoiding all contact with family and friends as they all just don't seem to understand or they tippy-toe around us.I have two beautiful daughters, (11) and my Kay (14). For some odd reason or fate, Kayla was diagnosed with this Mitochondrial disorder, Complex I and IV, in January 2004. Kay was able to walk up until September 2004 and now relies on a wheelchair to get around; she can still walk a bit but with assistance. I encourage her everyday to continue to walk...walk through the pain/weakness in her little legs. I am the primary person in Kay's life, especially when it comes to appointments and supporting her and I have been dealing with this on my own but I am at the end of my rope with doctors and appointments and not getting anywhere.I sympathize with the families out there who have lost a child to this disease and I thank god everyday that Kay has not reached that point. Still, it is hard to sit by and watch your own child struggle with the everyday stress she must go through; knowing she just cannot get up and walk again (right now); how she has to watch her friends and family meander around her while she sits. I have to admit though that I have raised an amazing daughter as through all this, she can still keep a smile on her beautiful little face, she has a great sense of humour, I love to watch her couch dance and sometimes I hold her 5'2" body in my arms and dance with her. She gives me such strength!!!!!!!!I know doctor's cannot save the world, but why do they have to take their sweet time finding out exactly what is wrong with our children. I think that causes more stress on them than the actual disease/disorder itself. Our dilemma in the last few months has been Kay's hemoglobin level keeps dropping and has had two transfusions in three months and they can't figure out why.We live in the beautiful Fraser Valley in British Columbia, I have left my job to look after Kay and now due to the costs of living we have to move north to where it is more affordable to live with one income.Well, I am just rambling and venting. Just some words of support or encouragement are what I need at this time as I am here with Kay packing for our move; my husband and other daughter have already moved.Anyhow, you all have a great day and I hope and pray this gets easier for us.Hugs )Please contact mito-owner with any problems or questions. Ann (mito), mom to - asthma, seizures, tremors, milk intolerance, reflux, ptosis, vision problems, headaches, probable Strokelike episodes, suspected mito, and to our angel ^j^ Kate Please visit www.HeartbeatsForMito.org website-A Site Dedicated to Families affected by Mitochondrial Disease. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 I completely understand how you feel. It took us all of my daughter's life to get a diagnosis and that only came after she died at age 8 and a half. Since she was born, we knew she had something and it dragged on until she died and then we got an answer. Thanks a lot, huh? I spent over 8 years wondering if I was crazy because there was something very wrong with both my girls and yet no one could find it and so we lived with unanswered question and a mystery disease that took her life. I never knew during the 8 and ahalf years that what they had would ever take their life and now both my girls are in heaven. I had the same problem with family not understanding. Watching your child go from doing things to not being able to is beyond any comprehendable heartache. When my girls lost their abilities in a matter of days from walking, urinating, bowel movements, talking , moving, head control, eating, swallowing, reading and seeing I could do nothing but stand by and watch it happen. I always wondered if they came home how it would feel for them to watch other children do things they always could and no longer could. However, when this happened to both my girls, they never came home at all and died in the hospital. I could not imagine leanna watching a child eat an ice cream in front of her and she could not eat anything or watch a child swim when she could not move a muscle. I used to spend so much time worrying about when that happens except it never came because when she lost those abilities, she died quickly. You should be very happy and proud that you have raised such a happy, confidant,girl. Both my girls were joyful. Always smiling, kind, pleasant and everyone loved them. Those accomplishments against all the difficulties they had in their life were more precious to me than anything. We live in our own world with this mito disease where the only people that understand us are parents who live with this ugly, evil disease in their life. Leanna died a little over a month ago and I actually comtemplateed getting off this group because I felt I had no reason to be on it and I could not take the heart break that comes with it when you get so attached to the children and then you lose them.The amount of support that was given to me after Leanna's death was beyond anything I expected and now for now I have decided I need these people in my life and Maybe I can still offer a little help to people that are where I was.I now realize that I live in 2 worlds, one with my family in friends that do not understand and one with my mito friends that DO understand. Hang in there. May God give you strength and wisdom. My prayers are to you and your children. God bless you, Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna (died 3-20-05) Samya's Memorial Site: www.samyahaddad.com/.org/.net Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 Juest Venting Today Hi everyone, I just need to vent today with some families that know and understand what my family is going through. It has been a couple months since I posted anything but I have been avoiding all contact with family and friends as they all just don't seem to understand or they tippy-toe around us. I have two beautiful daughters, (11) and my Kay (14). For some odd reason or fate, Kayla was diagnosed with this Mitochondrial disorder, Complex I and IV, in January 2004. Kay was able to walk up until September 2004 and now relies on a wheelchair to get around; she can still walk a bit but with assistance. I encourage her everyday to continue to walk...walk through the pain/weakness in her little legs. I am the primary person in Kay's life, especially when it comes to appointments and supporting her and I have been dealing with this on my own but I am at the end of my rope with doctors and appointments and not getting anywhere. I sympathize with the families out there who have lost a child to this disease and I thank god everyday that Kay has not reached that point. Still, it is hard to sit by and watch your own child struggle with the everyday stress she must go through; knowing she just cannot get up and walk again (right now); how she has to watch her friends and family meander around her while she sits. I have to admit though that I have raised an amazing daughter as through all this, she can still keep a smile on her beautiful little face, she has a great sense of humour, I love to watch her couch dance and sometimes I hold her 5'2 " body in my arms and dance with her. She gives me such strength!!!!!!!! I know doctor's cannot save the world, but why do they have to take their sweet time finding out exactly what is wrong with our children. I think that causes more stress on them than the actual disease/disorder itself. Our dilemma in the last few months has been Kay's hemoglobin level keeps dropping and has had two transfusions in three months and they can't figure out why. We live in the beautiful Fraser Valley in British Columbia, I have left my job to look after Kay and now due to the costs of living we have to move north to where it is more affordable to live with one income. Well, I am just rambling and venting. Just some words of support or encouragement are what I need at this time as I am here with Kay packing for our move; my husband and other daughter have already moved. Anyhow, you all have a great day and I hope and pray this gets easier for us. Hugs ) Please contact mito-owner with any problems or questions. 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Guest guest Posted April 23, 2005 Report Share Posted April 23, 2005 Suhad, I am so glad you have stayed on this group. You can offer tremendous knowledge and support and, hopefully, we can support you as well. You are ability to give to others gives me hope that I can cope as well. God bless, Anne R Juest Venting Today Hi everyone, I just need to vent today with some families that know and understand what my family is going through. It has been a couple months since I posted anything but I have been avoiding all contact with family and friends as they all just don't seem to understand or they tippy-toe around us. I have two beautiful daughters, (11) and my Kay (14). For some odd reason or fate, Kayla was diagnosed with this Mitochondrial disorder, Complex I and IV, in January 2004. Kay was able to walk up until September 2004 and now relies on a wheelchair to get around; she can still walk a bit but with assistance. I encourage her everyday to continue to walk...walk through the pain/weakness in her little legs. I am the primary person in Kay's life, especially when it comes to appointments and supporting her and I have been dealing with this on my own but I am at the end of my rope with doctors and appointments and not getting anywhere. I sympathize with the families out there who have lost a child to this disease and I thank god everyday that Kay has not reached that point. Still, it is hard to sit by and watch your own child struggle with the everyday stress she must go through; knowing she just cannot get up and walk again (right now); how she has to watch her friends and family meander around her while she sits. I have to admit though that I have raised an amazing daughter as through all this, she can still keep a smile on her beautiful little face, she has a great sense of humour, I love to watch her couch dance and sometimes I hold her 5'2 " body in my arms and dance with her. She gives me such strength!!!!!!!! I know doctor's cannot save the world, but why do they have to take their sweet time finding out exactly what is wrong with our children. I think that causes more stress on them than the actual disease/disorder itself. Our dilemma in the last few months has been Kay's hemoglobin level keeps dropping and has had two transfusions in three months and they can't figure out why. We live in the beautiful Fraser Valley in British Columbia, I have left my job to look after Kay and now due to the costs of living we have to move north to where it is more affordable to live with one income. Well, I am just rambling and venting. Just some words of support or encouragement are what I need at this time as I am here with Kay packing for our move; my husband and other daughter have already moved. Anyhow, you all have a great day and I hope and pray this gets easier for us. Hugs ) Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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