Where do I start...

Today was my last day working on the Infant Unit at the hospital this summer. I have spent 172 hours there, and I was surprised to find myself sad today. I’ve grown used to the way things are done there, and I like the nurses, but most of all, I love my patients. I love all my patients, but they come and go, and that’s not a big deal. But there are some patients that are long termers and will be in and out throughout childhood. It’s these children that you grow very attached to. You start to feel like they are a part of your own family. People have stories of patients they’ll never forget. I have one such story now.

I’ll go ahead and say it: It’s not fair! What’s happening to her is not fair! What her parents are going through is not fair! She was a normal little girl until age 4. She had her immunizations and then shortly thereafter things started going wrong. The first time she came to the hospital she walked in. Now she will probably never walk or talk again. She has severe spasms that have broken both femurs a couple of times. She cries out in uncontrollable pain. What’s happening to her is called degenerative encephalopathy, but the doctor’s don’t really know what caused it. Maybe it was a bad reaction to the immunizations. Maybe a virus. Now she’s six and the nightmare only worsens.

Her screams haunt me. You can hear them from down the hall. It sounds horrible and like someone is torturing her, but it is her own body that is her enemy. There is almost ALWAYS a parent with her… 4 months, night and day. That’s how long this stay in the hospital has been so far. Her mother stays with her all day, and her father stays with her at night. I was alone with her for about 30 minutes the other day while her father took her mother to the doctor. She began to go into her spasms and scream… it is the most helpless feeling in the world. And so I prayed. I just begged and begged that God would take the pain away, stop the spasms, bring peace, and cure her! But she continues on in this state. Why did this happen?

It seems easier almost, to have a child born with a disability, than to have a healthy child and suddenly have that taken away. You look into this little girl’s eyes, and it seems like she is still there, behind them, longing to speak, to tell us what hurts. She looks around the room from behind her long black eyelashes, and her mother talks of how it used to be. This precious little girl that loved horses and swimming. She is having fewer spasms these days than she once had, but it’s still really bad. And now, she does smile in response to questions sometimes. I know that little girl is still there, trapped in this tormented body.