Kari developed a small blood clot in her right leg today, so had to stay in bed all day and couldn't do more weaning. As this is resolved she'll return to her schedule of weaning from the respirator, doing 2-3 hours of physical therapy a day, and increasing the amount of time she can spend up in her wheel chair and learning to drive it. Thursday to Monday last week were days full of progress and skipping steps. I know these cheer all of us, but there are bound to be days where things don't leap forward. They inch forward, or stand still, or maybe inch backwards. We need to know all of it: the days of leaping ahead and, at least on the surface, of standing still, so we can all practice the habit of good cheer and pray that Kari can hold up too even in the midst of discouragement.
The day is often filled up with just getting through it: feeding her three meals a day, scratching her eyebrows, getting her a drink, helping the nurses and techs who come in every two hours to change her position, getting her up for physical therapy or to take her shower--a long and relatively complex task. Though feeling is returning to her hands and she is breathing more and more on her own, she's still not strong enough to move much on her own. When she coughs or needs suction, her arms jerk upwards, and we have to pull them back down because she's still not strong enough to straighten and lower them on her own. "Can you fix my arms?" is one of her common requests. She also says "I'm so tired" a lot because just getting through a meal or trying to control her arm enough to drive her chair takes so much effort, even when things are going great. When they're not going great everything gets that much harder.
Tuesday morning started off very hard because she was on-and-off with a fever during the night and early morning. Plus, Aaron had been gone to California, and anticipating his return caused fears that something could happen to him in route. We took time out in the mid-morning from just the normal conversations of the day to have a long deep talk about life and hope and fears. We needed to, though we try not to go deep at every opportunity (there are so many!) because these conversations, while necessary, are also emotionally draining. We talked about the most personal to the most theoretical things, and I wanted to share just one part of it here. "I'm afraid of letting people down," she said.
It's only right to marvel at Kari's strength. She continues to display an extraordinary patience and kindness, although another thing she constantly says is that she's so impatient. Yet all the great things that we say about her, and should continue to say about her, create a kind of expectation in her that she's got to deserve all this praise, that she has to be perfect, almost. I tried to assure her that while we all admired her courage and strength we also understood that in this, the battle of her life, she didn't have to be a saint, didn't have to overcome all odds, for us to love and admire her. I told her she couldn't disappoint us. We might be disappointed in the level of progress or healing for that day, but we'd never be disappointed in her. Let's keep up our choruses of praise to God, and praise for Kari, while keeping this distinction in our minds. It's an important one especially on days like today.
--Richard R. Guzman