Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 Dear Ann, Wow. What an analogy that was and so real. Yes, that description is exactly how it feels for all of us every day of our lofe. I guess the people that are dealingwith the fear of the hurricane today and temporarily can have a clue of how we feel, except like you said , it never ever stops for us until death comes. The only assured thing about mito is it ends with death. Your words are so true to my ears, they make me mad too. Believe me, we all have every right to be bitter, angry etc , especially some days more than others. I could have said it more eloquently myself. I pray to god the hurricane does not cause destruction. Enough destruction has already happened in our lives. Good luck. God bless, Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.Samya.org Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 Hurricanes and a Vent Hi everyone, I have been silent for a while as I take in everything that's going on in our kids' lives. Asher is stable right now. G-tube, muscle weakness, and auditory nerve damage, but he's also a happy little guy who seems " normal " to everyone else and can do lots of things like go to preschool and ride his tricycle. I'm writing a warning on this as it may seem a bit " raw " in terms of how I feel about this disease, but...I just wanted to vent. We have a Category 4 hurricane coming our way and I realized today that I feel better when everyone else is scared, too. See, I think I live like there's a hurricane around us all the time - threatening to come in and tear away one of Asher's abilities or capacities, like seeing or hearing or walking. This mitochondrial disorder feels like a Category 4 or 5 hurricane threatening ALL the time. I never know when it's going to strike; I just have to prepare - have all the right doctors, give him all the latest in medicines for the disease, know the signs of what to look for and what to do if the symptoms come; and then, I have to wait and pray that it doesn't hit and just take it all one day at a time. Not so easy to do. And now, the people close to me are scared too. I can call my friends and we are all talking about where we will go and how we will cope if the hurricane hits. And friends are offering us shelter. And, somehow, it seems for a minute, that I'm not quite as alone with the awfulness that can threaten people (whether it goes by the name of Hurricane Frances or Mitochondrial Disease), because now they're scared to!!!! And, I wish, like a hurricane, we could get it all over with in the next few days. I wish that mitochondrial disease could dissipate as a hurricane does. Yes, a hurricane is bad, really bad sometimes, but it ends. And there's a break. There is a season without hurricanes. Is there a season without mitochondrial disease threatening my son? NO. And I " m really really mad. Thank you for listening. I hope I haven't offended anyone. And, no, I really really don't want the hurricane to hit any land! Anne R Anne Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 > > Anne, That was beautifully stated. That is how I feel every day. People ask why I am always so serious and stressed. What if I miss something? What if I forget a med, or don't catch her heartrate drop? Or catch her fever before it is too high? People without this disease don't get it. That's why it is so great to have this group- where everyone gets it. Hoping that storm calms, Dawn Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.