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Warning Blasphemy coming... "Dear God, I've decided I'm done with the depression and the cystic fibrosis, I can't handle it any more, so you can have them back now, I am just done. Thanks"

I know everyone means well, and I really appreciate the concern, but please stop asking me if I'm o.k. because I'll just say yes. And truth is, I am drowning. I get out of bed and I take care of my husband and my girls, and that's it. AND THAT'S A LOT! I make sure they are fed, I make sure they have clean clothes (even if they are wrinkled). I make sure the girls have clean diapers and get their teeth brushed. I make sure all of Joyli's nebulizers, spacers, binki's, suringes, bottles, rings, nipples, spoons, g-tube extention, and supplies are all washed and sanitized every day. I make sure she gets her Albuterol, and CPT twice a day and Pulmozyme once daily. I hook her up to a machine every night to help her get more food. I clean up the vomit that happens several times because her tummy can't handle the g-tube. I make sure that we jump every time Joyli's Dr.'s say jump and they've trained me to ask how high. I make sure the endless paperwork for insurance is kept up on because who can afford $200,000 a year? I make sure that all prescriptions never run out, because that would be very bad.

Our living space is a disaster 95% of the time. I think I'm about a few months behind on laundry. My family is living on t.v dinners and it's a good day if I actually get a shower, brush my hair and get dressed. Don't judge me. You haven't been in my shoes, you haven't had the same experiences I've had in my life. I am doing the absolute BEST that I can! The depression in so bad. This CF is such an absolute HELL!! I HATE IT!!! I hate having to beg my parents to sit with my daughter in the hospital because I just can't handle it any more. What am I going to do when she's 10? Say "Sorry kid, you have to stay here in this nightmare for a few more weeks but I'm leaving because I can't handle it?" Joyli's been in the hospital so many times I've lost track. I counted up to her 7th stay in the hospital when she was 5 months old, but she's been in there so many times since then I've just been too busy and stressed to remember to count them all.

One of my favorite books in the whole world is a childrens book someone gave us on one of Joyli's stays at Primary's. It's called: "I knew you could" by Craig Dorfman

It's of course about a train and some of my favorite words from the book are these:

"You'll go through tunnels, surrounded by dark,
And you'll wish for a light or even a spark.
You might get scared or a little bit sad,
Wondering if maybe your track has gone bad.

So here's some advice to help ease your doubt:
The track you took in must also go out.
So steady yourself and just keep on going-
Before you know it, some light will be showing.
And then you'll be out, heading to a new place.
You'll be ready for the next tunnel you face.

Sometimes you'll look up and see planes in the sky,
And you'll think to yourself, 'I wish I could fly'
The cars on the roads will seem quick and free-
you'll feel stuck on your track and think, 'I wish that was me.'

But the plane might wish he could get out of the air,
Saying 'I wish I could travel like that train down there.'
The cars will watch as you speed right along,
And they'll say to each other,
'Look how fast and how strong!'
Don't worry about not being a care or a plane,
Just enjoy the trip you'll take as a train."

It is so dark right now. I wish that light would come soon.

Daddy's gift: A Very Special Christmas

The plan was to put up Christmas decorations right after Thanksgiving... but life is complicated. A few days before Christmas I figured we wouldn't have a Christmas tree and would try to at least have a clean area for Christmas. I hired a wonderful friend for a few days to come help with Hannah, so I could focus on cleaning and errands. I only did errands and that took all my time. Part of the errands were picking up Christmas presents and delivering cookies as thank you's to the families who come every week to help me with Joyli's therapies and treatments. As I delivered the cookies I saw their beautiful Christmas tree's in their windows. A twinge of selfish sadness was there every time I saw one. There are people who didn't get to see loved ones this Christmas for various reasons and I'm whining about a dumb Christmas tree. I know, I'm selfish. When I came home Christmas eve from errands I discovered that my beyond amazing, fantastic, wonderful, husband took it upon himself to clean EVERYTHING! He made it look beautiful! Not only that but he had set up the Christmas tree!!!!!!!!!!!! I almost burst into tears! Hannah and I decorated the tree together with the lights and decorations that "pa pa" and grandma had. And daddy got to put the star on top (a star ornament that my visiting teacher happened to give me.)

To further demonstrate how special this Christmas tree was: Hannah had been asking for a pillow pet for at least 6 months. And finally on Christmas she opened up her very own bumble bee pillow pet! Finally the toy she had been asking for for over half a year! The next day at church several adults asked Hannah how her Christmas went, they asked her what presents she got. I thought she would tell them all about her pillow pet or princess table, or her new dolly. But she never said a word about any of those things to anybody. She very excitedly told every person only one thing "I have a Christmas tree in my basement!!!!!!"

We were very blessed this Christmas. The Lord has been very kind to us to bless us with such amazing, kind, charitable parents and family. Thank you to them. We wouldn't have made it without you.

I would like to thank everybody who had family serving their country and sacrificed this Christmas without those loved ones. Thank you for your sacrifice. May the Lord bless you.