A question answering tutorial

I think that I am in need of a tutorial on how to answer questions. We got to go to church today which was nice, and too infrequent with Lila's flare-ups. Many people asked how I was, and how Lila was. These are good people. People who care, people who genuinely want to know, for the most part. And I am at a total loss for how to answer.

"We're doing okay." That's not really true. I am very tired. Lila is very tired. She was up almost all night, literally, the last two nights. She just can't sleep when she can't breathe. I am exhausted and frustrated and emotional. Maybe "okay" is the right answer - we are not in the hospital right now and have not set foot in the hospital for almost...5 days!!! (That might be a record for this month.) Maybe we are okay.

"Things are really hard." Well, they are. But we are also feeling lucky - blessed and grateful. And it's hard to tell someone how hard things are with my bright-eyed, happy Lila right there and looking good.

I could tell people how she is still having good days and bad days but still nothing approaching normal. She ran around outside for five minutes tonight. She was wheezing and coughing and out of breath when she came in, but she had those five minutes and that was nice. Even hopeful.

I could tell people that it feels like there is a shadow over us a lot of the time. Waiting and wondering if she is getting scary bad, respiratory distress bad. That I think Samantha has forgotten what normal is. That I am tired all the time. That both girls are having behavior issues from all the upheaval. That I imagine finding scary things wrong with Lila. That I worry about missing the first signs of serious trouble. That I long for routine and days without doctor visits.

I don't know how to answer. Do people want just the facts about Lila's health? Do they want to know about my worries for both girls? Do they want to know how complicated-ly emotional I am feeling? Do they want to know the way that it hardly feels like I have a life anymore because of how much management Lila's health problems take? I really don't know. So I guess until I get a better suggestion, I'll just say, "we're doing okay."

Lila and Samantha are in the bath tub right now with the shower on and princesses galore to play with surrounded by bubbles. I keep hearing them laugh and giggle. Ben and I were talking earlier that this last month we haven't heard that sound as much. I don't think Lila ever laughs in the hospital. That sound is music to my ears and a balm to my tired spirit. I wish I could publish those sounds online. They give me hope and remind me why we are walking this road, why we are working so hard to manage her breathing and get answers, and why, at least sometimes, it isn't too far from the truth to say "we're doing okay." Little girl giggles. For this moment, all is well in our house.

So if you were to ask me right now, "how are you all doing?" I would say, "Lila is still struggling with her breathing and not sleeping at night. I am very tired and scared and overwhelmed. But I am listening to laughter, and right now, feel like there will be an end to this." Here's hoping.