Friday, June 27, 2008


If I could pick one word to sum up this week I think that would be it. It's been a good week, Marie has been doing well with a few exceptions. Josie's awesome as always. We played, we swam, we sat in the sun (there is a definite possibility that I am a sun-addict), it was nice.

The passing of the little boy who also had Leigh's earlier this week has left me shaken. I feel like I'm in an Indiana Jones movie, in some dark cave and the floor I'm walking on is starting to crack then fall away into some deep abyss. Unfortunately I'm not as cool as Indiana Jones. Rather than being calm and finding a path of escape I often feel terrified, frozen in place. I want to stop it or change it but I've no idea how. I'm learning that in times like this the only thing to do is pray, pray without ceasing (for some reason that phrase keeps running through my mind, I think it might be a message so I'm trying to obey as best I can).

Marie's seizures are changing again, there are fewer overall but they are becoming longer and stronger. Yesterday morning saw one that lasted 4 horrible minuets. Her entire body tightens, her arms draw in, breathing is labored, her legs sort of kick up in the air and she will grunt and squeak. I think they hurt. So, I hold her hands and tell her how good she's doing, that it's almost over, how strong and brave she is. It passes and she's tired but picks right up where she left off. Resilient does not even begin to describe this child.

Last night Marie ate quiche for the first time. She loved it. I pureed it with a little half & half, she ate a good 3 ounces! Of course, it wasn't' just any quiche. It was pretty good if I say so myself. Ham and broccoli that I had sauteed with some fresh garlic and then about 7 kinds of cheese, because, cheese falls into the sun category. I just can't get enough. I was so proud of her though.

One of the things I had missed over the last months was being able to cook. Now that Rie is doing better I am able to do more, and Josie is a fantastic helper. I love trying new recipes, playing around, making good things from leftover good things... but by far the best part is watching people enjoy what I cooked. I love the look Luke gets when he really likes something I've made, but it totally fills my heart up to see Marie eat something I made and really enjoy it. What a blessing, and I am grateful.

Just in case you were wondering, Josie helped make the quiche but refused to eat it. Had it been a hot dog or boxed mac n cheese we'd have been good to go. Maybe it was the broccoli, lately she just does not dig broccoli.

Anyway, enough rambling. This weekend will be busy, our church turns 100 years old. How crazy is that? What is crazy is that my kids are the 5th generation to attend this church. Their great-great Grandparent's went there. Now that is something. So, Happy Birthday Zion Lutheran, God's blessings to you! We'll be celebrating by getting together with family and having a Rocky Mountain Oyster Fry at Luke's dads. If you don't know what those are Google it ;)

Thank you to those who continue to pray on our behalf, and to those who pray for all the other babies suffering this disease. Thank you so much for your kindness, and for taking joy in Marie along with us. Much love-

1 comment:

Michaelene said...

I have read and re-read this post about ten times. I support you completely. I am right here to be happy and joyous with you for such things as quiche (who woulda thought?!) and am still right here to seek refuge in Prayer for the unknown that you are facing.
Thank you for sharing such intimate details of your thoughts, feelings and life.

Much lighter note here - isn't cooking just the most wonderful thing when it's done with love? I love to feed people - it's almost like the love I put into my food feeds my soul! I can't imagine the way Marie's happiness in eating something that you've prepared must make your cup overflow!

And for Josie, I totally understand! My Mom used to make quiche with "little trees". Talk about traumatizing a child - she made me try ONE bite...I'm still in therapy! LOL
Hugs & Prayers...