Prayer Request

Imagine every night surrendering your child at the foot of the cross.  I have a good friend that does that and so I've told her she's a closet Catholic. For nine years, she has attached her daughter to respirators every evening as part of kissing good night.

Having Ondine's Curse, the autonomic functions like breathing and heart beating can and do stop when she falls asleep. The pacers and respirator keep her alive.  The readings of the past few weeks about "Staying Awake!" take on a whole new meaning when one considers the level of vigilance required by my friend and her family and that of the 200 or so families alive at this point in the US that must deal with this difficult condition.  They must be forever alert.

My friend handles this with a diamond type faith, scathing sense of humor and absolute force of will.  She can't have an off night or a tired night or a I'd like to slum it night.  There are days when I put them to bed late, when I don't read stories, I don't do the double check for teeth brushing, when I phone it in.  There are nights when I fall asleep on the job.  She jabs me at times, "I used to be impressed with you, but now that there are the Duggars, well, you're just not up to the job.  Maybe if you had twins." 

Many of you know the story of her coming to see Paul at the hospital. I was in a deep funk keeping vigil over him at Children's.  We didn't know when the operation would be, but heart surgery was coming and I was scared.   She'd brought me hot chocolate from Starbucks.  Up to this point, she'd not seen my son.   Looking at him attached to the wires and monitors, she said, "Wow! He's Down Syndrome Hot!" and I spewed hot cocoa.  It was the first hard laugh since his birth and it lifted the worry in a way all the assurances of Children's doctors and nurses hadn't. 

Now, her daughter is struggling and has needed oxygen since Thursday.  Her mother cannot get her off the machines.  Shelley is normally pretty relaxed about managing this condition.  She handles the visits to the ICU the way the rest of us deal with colds, she just manages.  For her to even say that she's worried means the rest of us should pray. 

So I'm asking all of you to ask for a healing for Zoe for Christmas.  They are a beautiful family though I've only given you a snap shot of the mother.  Thank you.