Sunday, December 2, 2007

Bear with me...

This has been a really long week, not entirely sure why, maybe it's just PMS! LOL

I came across this today and thought it was an interesting analogy of Mitochondrial Disease:

"Imagine a major city iwth half its power plants shut down. At lest, such conditions would produce a "brown out" with large sections of the city working far below optimum efficiency. Now imagine your body with one-half of its energy producing facilities shut down. The brain would be impaired, vision would be dim, muscle would twitch spastically or would be too weak to allow your body to walk, or write, your heart would be weakened, and you would not be able to eat and digest your food.
For large numbers are people, especially children, this is precisely the situation in which they find themselves due to defects in the mitochondria, organelles found in every cell of the body which are responsible for the body's energy production. Mitochondrial disease compromise their lives and can be fatal."

I think for the last few weeks I haven't really believed that Emeric has this. Maybe that's the whole "denial" phase I don't know. I think I'm over the denial phase and now it's really hitting me. I feel like no one understands and everyone wants to pretend like he doesn't have this or that everything will be ok. I'm sure they tell me this thinking it helps but right now, it doesn't. He does have this and while everything may be ok, it may not too. I don't plan on sitting around everyday consumed with the "what if's" but I do think I deserve some time at least to process it.
I don't want people to get tired of me talking about him but I do want people to understand that it is hard to know he's sick. Even when he looks "healthy" right now I can tell it IS affecting him. Just when I start thinking something isn't related I find out it probably is. Recently his eyes have been really purple underneath and he just looks tired all the time. I asked some of the people on the Mito support group if this was anything related and quite a few people's kids have the same purple rings. They've been told sleep helps and it's just related to the disease. It's related to the fact that he doesn't have enough energy, which is why he always looks tired or sick. I know all kids are different and sure it might not be why Emeric has those purple rings but it might be too.

I want my family to know that not an hour goes by that I don't think about how he's feeling or if he has a headache or if he looks "off" or if this recent illness is going to trigger some new symptom. I guess I want them to know because I don't want to feel judged. I feel guilty for talking about Emeric all the time when I have two other kids but I think, or hope, that once I can come to terms with everything that it won't have to be something I talk about all the time. Talking about it helps me cope with it because when I bottle everything up and don't talk about it that's when I end up depressed.

I'm not sure the point of this post. It helps to write it down because I'm tired of crying about it.

Please continue to keep Emeric in your prayers. As I said, his eyes have been really purple and he just looks tired all the time. His legs have been looking a different color than the rest of his body too, I have no idea why but I'm going to talk to the doctor about it. He also still has the bacterial infection in his colon and he had been doing better with his stools and now he's back to pooping 4-5 times or more a day. That's when he'll start losing weight again. :(

Thanks to those who read all of this.


Kelley said...

Thanks for the update. It was good to talk with you yesterday. You're doing well, Nicole. One day at a time...........
Those pictures are sooooooooooooo cute!
Can't wait to get a card.
Aunt Kelley

Miranda said...

Hi Nicole, I just thought I would leave you a comment and let you know that I think you are doing a great job dealing with all of this. I have no idea how hard it would be or how I would handle all of the uncertainty. All you can do is try to do what is right for you and your family. If talking it to death is what helps you then talk away!! No matter what happens or who says what just keep in mind that the most important opinions in this situation are your own. You and your family are the ones living with this, not anyone else.

Good Luck,

Erika said...

I just checked your myspace and saw that you have this! I think its great and I hope that it helps everyone understand whats going on a little better. I just wanted to let you know that I contually pray for you, Emeric and your whole family. You know that you can call me anytime to talk. I love you! Hang in there you are doing the best job you can!

Is it nap time yet? said...

Hi Nicole,

You are very strong for handling all of this; I am confident you are doing the best you can. God certainly has His hand in the situation and more importantly, He has His hand on Emeric. If talking about Emeric helps, that is definitely what you should do. I am praying for Emeric and your family right now and I appreciate that you update your blog because it helps to know what to specifically pray for.

I hope to see you around Christmas!


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