Preparations

Lila is still on the up side of things, although I think she is getting slightly worse again. She is still waking up most every night saying she can't breathe, which is so hard on us both. She still rests frequently. She is beginning to have some trouble outside again. Still, I am grateful that she is where she is and not worse.

It is hard, though, when we are at this stage, knowing that she always gets bad again. It's hard to keep from feeling like we are living under a cloud and never knowing when a really wicked storm is going to come down around us. I'm trying to focus on the positive, but it's difficult when the worry is always present.

We are preparing for Denver. We are not going to New York like we had planned. Since the church has agreed to let Ben be gone with us the whole three weeks (two plus weeks of treatment and several days of travel time), we all decided that having him gone for the week before was too much. He needs to be here serving the church before this long time away. Chautauqua in New York is my favorite place in the world and a time of rejuvenation that we look forward to every year, and this year, was a way to make some money for Lila teaching classes. Despite all of those things, I am feeling a little relieved. It seemed like too much to be gone there and then come home and leave again.

So I am preparing. We leave two weeks from tomorrow. The girls are preparing too in their own way. We have been trying to make sure that Lila knows that they will be trying to help her there, but that it will be tough on her. She says that she can manage getting IV's, blood draws, and pinches (her word for shots) but that she can't be brave about it. I think she doesn't like the word "brave" because we mostly use it when something is going to hurt her. She is brave. She just doesn't like the word so we don't use it and we tell her that it's okay not to be brave. Samantha is realizing that this is going to be a strange trip but is thinking of things we can do to make it easier on Lila. She really is a compassionate, amazing kid. And I am trying to think of all the logistics that need to be dealt with here and taken care of so that we can function for three weeks 1150 miles away from home. And trying not to worry about money. So strange to make plans for a trip when the money still isn't there. We have received around $500 since my last update. We continue to be grateful, humbled, and just a little scared. Two weeks and we still don't have enough to go. Talk about faith. Or stupidity. Sometimes I'm not sure which.

No, I know it's faith. I know that it is faith that is getting us through, faith that is keeping us going, faith that led us to this place where my daughter has the best chance of healing, and I see God's hands in the hands that are lifting us up in prayer and helping us make our way. So we will try to keep the faith and we hope that you will too.