Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 We are new to mitochondrial diseases. Our son is diagnosed with non specific mitochondrial disorder. He has " episode " of lethargy, no muscle tone, myoclonic seizures, retracting respirations. How do you deal with the uncertainty? The mito cocktail doesn't seem to help much. Any advice? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 Welcome to the group. It is a very supportive group and you will find answers to most of your questions. In regards to " how do you deal with the uncertainty? " is a tough one to answer. I think we all deal with it differently and the feelings come and go. For me there are days that I find comfort in the uncertainty. I'm not sure I want to know how it all will end because then my focus would be on that instead of enjoying Wyatt at this moment. There are other times when it seems like everything is falling apart and I spend the day in tears. The next day comes and Wyatt greets me with that incredible smile of his and the twinkle in his eyes and I am thankful that I have that moment. Also time seems to help for me. After awhile I have found that at first things seem overwhelming, but when I take a deep breath I realize I can handle it. I've handled it in the past and I will handle it in the future. Also right after my son was born and he was having tons of complications I was given the best advice by a very caring nurse. She told me there are two things that will help you when you are at your lowest point- a support group and faith. Both of them have never failed me. Also realizing when you can't do it anymore and asking for help. Good luck and again welcome. Geri-Anne and Wyatt, complex I -- In Mito , " morganmito " wrote: > We are new to mitochondrial diseases. Our son is diagnosed with non > specific mitochondrial disorder. He has " episode " of lethargy, no > muscle tone, myoclonic seizures, retracting respirations. How do > you deal with the uncertainty? The mito cocktail doesn't seem to > help much. Any advice? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 First of all, welcome. You are in very good hands here, as everyone on this list has experienced that horrible uncertainty which you are going through. My name is ruth and i am the proud mom to two beautiful kids,both of who are mito affected. I wish i could tell you there is an easy way to deal with the not knowing, but my experience has been that there really is no "easy" way. Some days are better than other days, when i look at my kids and hardly even think about the "what ifs" that are lurking out there. We do as many normal things as we can, so that they have as much life quality as possible. And then there are the bad days when it threatens to overwhelm me, and i get scared out of my mind and want to scream and rant and rave at how incredibly UNFAIR this whole disease is.... My best advice is to find a way to make your peace with the concept of "what if". I do it by taking on only one crisis at a time, learning which things i can let go and which i need to hit head on (this list has been invaluable with such thigns), and most of all just taking one day as it comes (sometimes an hour at a time on bad days). Wish i could be of more help, but above all else, i'm glad you're here. ruth mom to Mitch (9 1/2) and Lexi (6 1/2), both mito affected and my treasures Quote Link to comment Share on other sites More sharing options...
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