Boring day...

[Guest guest]

Dear fellow parents,

I'm following 's advice and having a very boring (relaxing)

day. It's almost 1pm here and I'm still in bed. My son (whom I

believe has Mito but I haven't had him diagnosed) had a seizure last

night at 1am and has been up since. After some of his nighttime

seizures, he'll get a temperature, get completely jittery, have to

walk and walk and walk, and pick at things. He picks and grabs at

the comforter, he'll pinch my arm, he's just very uneasy.

Since he has alot of these sort of nights and has for years, we've

had to put a lock on our door so he won't walk out into the house.

He knows no danger, doesn't understand. I've been used to sleepless

nights for years....I guess since he was born cuz he always was up

every few hours. Anyway, I'm exhausted. My 16 year old is so

wonderful and took his brother out in the living room and is taking

care of him so I can rest. Our family learned early on to give each

other breaks, many, many breaks.

I'm here wondering about our (parent's) health. Do you have time to

exercise? While we talk about all the health ideas we should try on

our Mito kids, how are all of you taking care of your health? My

son really brought home to me the need/idea to be healthy, to stay

alive to take care of him. I wish I could say that I'm strictly

following a regimen to be healthy. I'm not. I always have in the

back of my mind that I'm going to buckle under all this stress. But

I just keep on going. He's getting older (will be 13) this year and

taller and stronger (those seizures sure build those muscles!)

He's amazingly strong and I'm a short woman. This disorder is just

deteriorating and he's lost so many abilities. Just to get him into

the van to go to Walmart is a chore. Then getting him into a

shopping cart or his Maclaren stroller is getting more difficult for

me. He can hardly manuever for himself.

Yesterday, my daughter, myself and my son did the grocery shopping.

What a production!! It took three-and-half hours. First I push the

stroller and my daugther pushes the cart. Then when the cart is too

heavy, I push the cart and she pushes her brother. Maneuvering

around the aisles, wow.

I guess I just needed to vent some today and I thank you all for

being here. It's exhausting and I know you all are just as tired as

I am, not to mention the emotional draining. That's another post.

May I just end by saying our children, Mito or not, are so worth

everything we do. I wouldn't change a thing. My little guy shines

such light into my world. All my kids do. Parenting has to be the

most rewarding experience of my life. As the song says.... " I'm so

glad I came. "

Liz

Alabama