Wednesday, May 14, 2008


Little girls

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:

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.


Mindy Pfohl said...

Shannon- Thank you for adding me to your blog roll. I will do the same with yours! I haven't ventured out with a lot of new blogs... just no time. I really appreciated your post today. You put into WONDERFUL words what I am feeling this week myself. I so much wish I could take away this hurt from all of us. I don't understand it. I think that marie does see jesus... I think Jesus is close to every child walking through this. There are days I have seen it with joseph and I know that he can't tell me what he feels, but I see peace in his eyes and i know that the only thing that could bring that peace is Jesus! Hang in there. I'm praying for you as well! -Mindy

Jesse Ebner said...

I am not sure if words I write will bring comfort to you, but I wanted you to know that I think about you and your family every day and hope for the good days everyday. I can't imagine what you are going through, but you have to be the toughest women I have ever known. I hope one day I can be half the Mom you are! Just try to remember all the good days and enjoy them while they are there and know that the bad days will pass. I love you! Please let me know if there is ever a thing I can do for you.--Jesse

2awesomekidz said...

Thank you Shannon!!
It is right on!


Violet said...

Hi Shannon~
My name is Violet. I am a young single christina woman. I stumbled on your blog by accident. I clicked on the wrong link on a friends blog. I haven't read much of your blog but, your family and little Marie will be in my prayers. I have another family I pray for who share their blog of their sweet Noah who as a mitochondrial disease. At 2 Noah is walking and doing some talking. Perhaps you two can be blessed by each others stories. You can read Noahs story hear:
In my prayers.

Melinda said...

Shannon, I wanted to let you know that everdyday I am praying for you all. I know Marie's coos are priceless! Big hugs to you all! And I am amazed everyday at what children Josie's age really understand. Our children are amazing! Hugs those girls!! Many prayers for you all!!

Milk Mama said...

Shannon, my prayers are always with you and with your little girls. I can't imagine how hard it is. I can never know what you are feeling, but that doesn't mean that I can't be here for you as a sister in Christ Jesus. The Lord never makes mistakes. There is no such thing as a mistake when it comes to His Creation. Marie is here for a reason. Her life will touch so many more people than we could ever imagine! Every day is a miracle with Marie!
Many blessings~