Grace is tough to accept if you've never known it

FEAR

Walking a rough road with our neighbors has been our honor for the past few months.

Our neighbors' 18 month-old niece, Xuan Xuan, had serious heart problems related to Down Syndrome. Xuan Xuan, her mommy, daddy and grandparents live in a rural community a few hours away from our city. They have been staying with our neighbors, their family, for a couple months so Xuan Xuan could access treatment in Changsha. 

We've known about Xuan Xuan since she was born, but I believe this is only the second time we've met her as they seldom visit. Our neighbors have wanted to talk with us about issues related Xuan Xuan's condition and special needs since we also have a special needs kid and are connected with Butterfly Home. We tried to encourage them that they're doing a brave, right, albeit countercultural thing raising Xuan Xuan with dignity.

There have been talks about the inherent value of all children and clarification of genetics misconceptions. My neighbor, the not-blood-relation aunt of Xuan Xuan became pregnant this past year and was seriously concerned that her baby would have Down Syndrome also. For a few weeks there she was learning toward aborting the baby. Glad we talked through and got past that. She's due in less than a month and they are happy to welcome another child.

DYING

Now back to Xuan Xuan. A big problem with her heart landed her a bed in the ICU for a couple weeks, in isolation. Parents were not allowed in. Doctors said she had a 10% chance of survival. So here's her mom sitting at home weeping, wondering, "Do you think I can donate her organs?" and preparing for imminent death. As her default, lone, untrained counselor, I was trying to help her think through it -- what are special things that you want to do for / with / say to your daughter in these last couple days? And offering deathbed comforts like, "Although her life was short, she was happy and loved by you, you did a good job." 

This all became 100% irrelevant the following week when Xuan Xuan got better.

Next her heart condition was misdiagnosed; major surgery and unmanageable medical costs we anticipated so the family implored us to help locate and acquire financial assistance. I was sending medical records to the Butterfly Home to use their connections for a correct diagnosis. Butterfly was ready to help in any way. Finally our Changsha docs seemingly got it figured out, did a minimally-invasive procedure and for now Xuan Xuan is fine.

LIVING

Xuan Xuan was released from the hospital and came back to our neighbors' home, so we all had a celebratory / goodbye meal together. That night I handed Xuan Xuan's mama a gift of pretty girl dresses (I go all out on the pretty dress gifts because hello, I don't have any daughters myself) and an envelop of financial help from our family and two of my close friends who also knew of Xuan Xuan and had been moved by her story this whole time.

Later that night Xuan Xuan's mom came up to my place, bowed and returned the envelope saying, "We cannot accept this, take it, I haven't yet reached that low place of need." I asked her to come up again the next day and talk.

GRACE

We sat down with mugs of green tea, baby Xuan Xuan on her lap, and had an open talk about feelings, fears, faith, and why she couldn't accept the gift. Basically they felt a reciprocity imbalance, like they'd never be able to repay us. That is totally understandable and respectable. And we totally know they don't "need" the money. But gifts -- grace -- is not earned and not repayable. It's about showing support, kindness, care, letting neighbors and strangers that they are not alone in difficultly, that there are friends and even anonymous people out there who want to share. I tried to convey the meaning:

• Butterfly Home cares for orphans, the orphans can never repay. Many of them die. Grace.

• Drew's salary covers all our needs but sometimes our friends still send us financial gifts, to affirm their agreement and partnership. Grace.

• Group of six moms (my friend's friend's group) with their Down Syndrome kids came to visit Xuan Xuan's mom one night, traveling far just to encourage her. They didn't have to do that. Grace.

• Jonathon had life-saving brain surgery twice, performed by excellent surgeon for no salary and all expenses covered by donors. Grace.

Butterfly Home, our personal supporters, the Down Syndrome moms' group, Jonathon's surgeon and donors -- all four have personally experienced and learned grace from Father, and this experience led them to practice grace. Now isn't that interesting!? We talked about the character of Father. And did a character comparison with her idea of our popular local bodhisattva, who she said she's doubted for a long time, I said me too. ;) She said it was the first time she's ever met someone who believes in this kind of Father. First time she's ever heard this message -- grace, gracious character of Father, people practicing grace because they learned it from Father first. Well. In this mind-blowing introductory talk I did not even mention the overwhelming work of the Son, we were just beginning to consider what is the true nature of Father. In time.

Even though we had that blip with the rejected cash it set us up for an exchange that was much more valuable than money.

TRAIN

Train took them home, but we'll see each other in Changsha again next month when they're back for treatment. Little Xuan Xuan is stable but has more complications that need care.

I am so, so, so very thankful for these good, honest friends who live about ten feet below us, and accept us in to their lives so we can walk these roads together. Good people and good neighbors!

counting the graces

thank you Father for

apartment 507, right below us

at the market, unusual pretty round eggplants for stuffed eggplant

struck today by how the wonders you do even in a week really are too many to recount

friendships at yoga class, especially Gao Jie

laughing with Wang Ayi about our little wooden man and his funny body positions corresponding to my moods

family dancin, especially dancing with Mai Mai during Easter music

love of the parents, all four

learning to be sad, just sad and not angry

Titus' authentic smile

no brokenness ever beyond your ability to heal and restore, ever