Request for Prayer

This blog is many things; sometimes political, sometimes silly, sometimes serious.  Today, it is urgent. 

A friend of mine has a daughter.  She is my daughter's first and to this date, still best friend despite having moved to Texas.  Zoe has a rare condition that is called Ondine's Curse; her autonomic functions stop if she loses consciousness.  Thus, to make it to the age of 10 alive, she's had to be put on a respirator every night, has pacers and has had more tests and hospital stays than can possibly be counted. 
Right now, she's having a bad spell of days and nights, where she is on and off oxygen and the machines are a companion that is not leaving.  People with this condition sometimes have spells where it is better or worse as they age and develop and the demands on their bodies change. This is a type of growing pain that none of us ever hope to experience. There simply isn't enough known about this condition because so few have it and survival is so precarious.  

Whenever I feel the least bit overwhelmed by my situation of too much, I think of my friend and her family and how I have the odd luxury of not having to be hyper-vigilant. Maybe I should be, but I have the taken for granted by most of us, gift of not being on red alert all the time.

My friend (Zoe's mother), bears this burden with tremendous luminous grace and humor and her faith is Christian steel. She surrenders her daughter to the trust of God at the foot of the cross every night, and every car ride and every time she lets her go out into the world. Even more impressive, she does let her daughter go out and seize life. Zoe has done cheer leading and gymnastics and gone to school and has a vivid imagination and wicked sense of humor; she reminds me of her mother. (Zoe would carpe diem regardless as she is a zealous creature; part of why my daughter loves her so). 

Her family does not hide this daughter under a bushel basket, nor do they allow it to color her faith or her temperament with the martyrdom of suffering; the condition simply is.   As her mother said once, "How could I do less?"  Well, I don't know of any who could do more and still keep themselves so grounded, so present, so lively and so laugh and light filled.  

When I was at the hospital with Paul for his open heart surgery, Zoe's mom made a trek to DC to see me within the first week, bringing Starbucks hot chocolate.  She had not yet seen my son.  Looking at him in the isolette as she handed me my drink, she studied him for a few moments and said, "Wow, he's Down Syndrome Hot."  I spewed cocoa everywhere --it was the first time I'd laughed hard since I'd been at the hospital staring down the prospects of Paul's procedure.  It was a healing moment for me.  

So I'm asking everyone to pray for Zoe and her family; to pray that they can go back to simply preparing for Christmas, that this bout of having difficulty maintaining blood oxygen levels and continuing to simply breathe and exist passes.   Pray for Zoe to spend Christmas at home with her family and for the extraordinary gift for their family of ordinary days and peaceful silent breath filled nights.