Hurricanes and a Vent

[Guest guest]

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