Wednesday, May 14, 2008
I am having a tough week. I don't know why. Maybe it's the reminder of how horrible, horrible, horrible Mitochondrial Disease is. Their was a little girl, Josie's age, who lost her battle with Mito this week. It is a tough reminder. Sweet Landon, who has Leigh's like Marie has been suffering so much, I hurt for him, and at the same time, it is a tough reminder.
I found a fantastic description for what Mitochondrial Disease does to a body:
WHAT IS MITO?
Imagine a major city with half its power plant shut down, at best this would cause a major black out. Now imagine your body working only to one half, the brain is impaired, vision is dim, muscles twitch and you are to weak and muscles too fatigued to walk crawl or write. Your heart is weakened and you are not able to digest your food. For a large number of people especially children this is a fatal disease.
It is vicious. When Marie was first diagnosed with Leigh's we had gone through a brief period where we actually thought she had cancer. In the early days I often wished it had been cancer. The prognosis for both is poor, but at least people UNDERSTAND cancer. I could just tell people, she has cancer. Instead, I had to give a brief science lesson on what Mitochondria are, how they function, why its bad. IT IS SO FRUSTRATING! The closest comparison I can come up with, is that it's the same as Marie having been born with a defective heart. Her cells just don't work.
She's cooing again. It's so sweet to hear, still no crying, but she coo's. Still no smiling, but I see it in her eyes. It's hard to watch her sometimes though. Every tiny squeak is something she works so hard on. Her mouth works and works, nothing comes out. She tries so hard, fists balled up, neck stretched out, and finally, a coo. WHY MUST EVERYTHING BE SO HARD FOR HER!!!!!!!!!!!!! Why does she struggle so hard to make a noise, others take that for granted. I hate it. The only thing that brings me relief is knowing that she has God and Jesus on her side. I swear, she see's them. She looks over my shoulder and talks away, to what I'm not sure. I'd like to think that she's talking to Jesus, and he's comforting her. Because, honestly, sometimes I just don't know how.
My baby, my baby, MY BABY! My babies. This is so hard on Josie too. We talked yesterday morning about heaven. Josie was afraid that when she finally gets there Marie might be gone from heaven, that she might have left for some reason and not be there anymore. I told her that once we get to heaven we stay there, we don't leave. She struggles to understand. Her Bunny is sick a lot, he has seizures, he doesn't feel good. I hate that this is her reality, but I know it's making her a stronger, more compassionate person. Josie would like to be a doctor when she grows up. She humbles me.
Tami, this is for you. I haven't posted poetry for a long time, but it sums up how I feel, and how I know you feel.
Child by Sylvia Plath
Your clear eye is the one absolutely beautiful thing.
I want to fill it with color and ducks,
The zoo of the new
Whose name you meditate --
April snowdrop, Indian pipe,
Stalk without wrinkle,
Pool in which images
Should be grand and classical
Not this troublous
Wringing of hands, this dark
Ceiling without a star.