Free An Uncomplicated Life by Paul Daugherty Page B

of this, and I’m not going to take it anymore.” It was a wail that topped all those that came before it, in emphasis, volume and sheer anger. It was like nothing I’ve ever heard.
    THAT TOXIC GOB OF evil mucus dislodged itself from Jillian’s lungs and made its way up her throat and out the front door of her mouth. This six-pound child’s screaming revolt had achieved what a week’s worth of aerosols and meds had not.
    I believe that Jillian’s spirit saved her life. It saved her for us. She was not going to leave so soon. Too much to do. Too much Jillian to spread around. Much more time required. No time for any more of this hospital.
12/2, 12:30 p.m.: Dr. Jonas, new doctor on rounds. Says Jillian is doing better. Her lungs sound very clear.
    The aerosol treatments continued. The suction and the wailing, the feedings, 25 cc’s at a time. But now Jillian was doing better. Two days later, they removed the oxygen box from the crib. The day after that, she stopped needing the aerosol. The next morning, we bathed her. And we weighed her. She was 6 pounds, 14 ounces—one ounce lighter than when she’darrived at Children’s Hospital. Only three ounces more than when she was born, six weeks earlier.
    There was a knowing in her eyes though. You see it all the time in hospitalized kids. They always appear older than they are, as if the struggling they did with something beyond their control had informed them about life’s vagaries in a way that healthy kids will never know.
    Sick kids have struggled, they’ve endured. They own something most of us never will: A wisdom, a patience, an ability to cope. Whatever it is, it belongs to Jillian, and has for 24 years.
12/2, 5:30 p.m.: Dr. Brokaw decided to have her stay overnight with no aerosol treatments, to observe, then send her home tomorrow a.m.
    Jillian attacked life from the day she became a member. Jillian has never been less than fearless and engaged. In baseball parlance, Jillian gets her hacks.
    There is that. And this:
    Her existence has a point. Jillian might have gotten a bad dice roll, but her presence is not happenstance. She is here for something. This is what I took with me from Children’s Hospital after 12 days. Jillian survived. She is here for something.
    This is what I believed then. This is what I hold dear.
    Kerry’s last note:
12/6: Jillian began cooing at us, and also in response to us.
    Ah-oooh.

CHAPTER 6
    Kelly
    . . . and remember to be kind.
— JACKSON BROWNE
    T he first time Jillian laughed was after Kelly made a face. He’d been working on it for days. He’d contort his gaze into all manner of goofiness.
    He would test the elasticity of his nose, up and down and side to side.
    “Hey, Jillian, look at me! Look, Jillian!”
    He’d use his fingers to pry open his mouth. He’d do fantastic things with his face and tongue. The human gaze is a marvelous instrument of expression. Kelly turned his into Comedy Central. Kelly did this because that’s what little kids do, but also even at age three, he was beginning to understand there was something different about his sister.
    The first laugh happened when Jillian was two months old and freshly freed from the hospital. What we heard was a staccatorumble from somewhere deep. Kelly was busy making his funny faces, and Jillian was sitting up, propped by the couch.
    “Did you hear that?” Kerry said.
    I did.
    A laugh doesn’t seem like much, but we hadn’t done a lot of laughing in those first eight weeks. During Jillian’s hospital stay, laughter was an obscene, awful foreign language. We had to learn it all over again, and to be grateful for its presence.
    It wasn’t difficult. We hadn’t lost Jillian, and in the process, we’d found something. Calling it “perspective” is clichéd. Everyone who knows someone with a disability talks about the perspective they’ve gained from the knowing. You might find “perspective” when Jillian is right in front of you. You lose it the next time