The beauty of this child is outrageous. And her inner beauty is equally astonishing- our girl is made of love, snuggles, giggles and apparently, lots of math facts.

Praying

It doesn't have to be
the blue iris, it could be
weeds in a vacant lot, or a few
small stones; just
pay attention, then patch

a few words together and don't try
to make them elaborate, this isn't
a contest but the doorway

into thanks, and a silence in which
another voice may speak.

~Mary Oliver~

spinal defects clinic: in which we meet with E's specialists from ortho to neuro and everything in between.

Last night in this house. 

E: I don't like my legs. 

M: You don't like your legs? 

E: No. I want normal legs (tears begin). I don't want these legs. I don't like the scars Mama and they don't go straight and one is longer than the other one. I just wish I could have legs that looked the same and so I can walk. I don't like crawling. 

M: (long silence, hugs). I wish you could have the exact legs you wanted Elle. But I have to tell you how very much I love your legs. Those scars remind me all the time of how brave and strong you are, so I love those scars. And you have strongest arms ever which give the best hugs I've ever had, so I love your arms too. 

E: Well I don't. My hands hurt and I don't want to crawl, I want to walk. But I never will. 

M: Maybe never. But we don't know what your future will be like yet. I hope you have a chance to stand and not sit all the time too. I wish I could sprinkle magic glitter over your legs, and make it possible for you to use them like your friends. But I still think they are the coolest legs because they belong to the coolest girl I know, who does amazing things not using her legs. Things no one else would be able to do- and that is really awesome. (More silence, hugs, and tears). 

Spinal Defects clinic is tough in ways that go so far beyond the physical.

Family Day 2013

First, when I was apart from you, this world did not exist, nor any other.
Second, whatever I was looking for was always you. 

 ~Rumi~

4 years since anticipation, excitement, fear and grief culminated in the creation of our little family of three. 4 years since the seeds of love were planted in each of us, and slowly bloomed. 4 years since you, Elle: light and grace and courage in one very small, almost 4 year old body- you, the bravest of us all. Happy Family Day, 高梅, who we are privileged to name and call: daughter.

"Sometimes if people ask why I can't walk, I just tell them I was born this way. Other times, I say- it's a long story and I don't want to talk about it right now".

~E~

(and a very smart girl, my daughter)

*At the end of my suffering, there was a door

Many, many years ago, long before this light came into my life (in many ways, not just by virtue of reuniting with G or bringing E home), a dear friend and then therapist opened a battered and much loved book of poetry by Gluck and had me read this poem, The Wild Iris. As a lover of the written word, and in particular, poetry, this introduction to delving into the root of my own suffering was unparalleled. But then, there is no match for one as gifted as my (now) friend H. He broke molds, including my own, and it is because of him that I have my being, full and well, scarred and renewed.

I think this is true for our daughter as well. There are countless doors she will and has passed through, all of them transforming her and us as we journey together. This poem is a testament to her many (and often excruciating) beginnings- from the womb into breathing life, born yet again to a nanny that was a mother to her, and born yet again to us, her adoptive parents. And each time, a departure that leaves a void incapable of being described. A primal wound, an unimaginable loss. She is, in a word, a hero in her own right. And that's nothing to do with the chair, or her physical challenges, but everything to do with her incredible spirit, her "though she be but little, she is fierce" soul.

I hold this poem close to my heart. I hold her closer.

The Wild Iris, by Louise Gluck

At the end of my suffering
there was a door.

Hear me out: that which you call death
I remember.

Overhead, noises, branches of the pine shifting.
Then nothing. The weak sun
flickered over the dry surface.

It is terrible to survive
as consciousness
buried in the dark earth.

Then it was over: that which you fear, being
a soul and unable
to speak, ending abruptly, the stiff earth
bending a little. And what I took to be
birds darting in low shrubs.

You who do not remember
passage from the other world
I tell you I could speak again: whatever
returns from oblivion returns
to find a voice:

from the center of my life
a great fountain, deep blue
shadows on azure seawater.

It has been a short summer it seems, as it closes in a few weeks and school begins again: second grade. I'm not at all sure how we landed here so quickly and easily.

E has been keeping up with her Chinese and practicing reading and math via her school website and has had a handful of play dates, never enough really for an only child. She's watched too much TV (insert My Little P*ny) and has barely read even one book (her least favorite activity). There are new challenges in physical therapy as she learns to navigate the world with this loss of sensation in her left leg. As she often says to me "It just feels like there is nothing there, like when I crawl, and it's like being in a hole". This weekend, she shared that "I just want to walk like other people mama" amoung other things she'd prefer to do just like us. I could only validate those feelings and let her process them. I refuse to sugar coat her life or tell her "But look at all the things you CAN do". When her grief surfaces, I've found that what is best for her is to experience it- somehow this allows her to move past it and never fear that she will be judged for what is in her heart.

I worry constantly about her future. A child of color, raised by white parents in a white family, who moves in this world differently than all of us: adopted into a culture she didn't choose, wheels for legs :) She remains shy yet confidant, and is a natural leader. It borders on bossy but I know one day this trait will only stand to serve her.

I continue my efforts to find all that I can about her past, which at this point is precious little. DNA testing has shown me that she is Northern Han (a majority group in China) and we have connected with 2 or 3 very distant cousins... so far, trails are cold. I have become an avid reader of news in China, corruption that is rampant in their IA program and trickles down to children with special needs (though it's not suspected in Ellis's case). I've had a birth parent analysis done by B. Stuy (very worthwhile for us) and keep in contact with her foster home, New Hope. If I have to take out a loan to get back to Beijing and Jiaozuo next year, so be it. It's just time to go.

As for me- well, work has changed. I've let go of the petty political BS and have embraced my role as a "healer" (never thought of myself in quite this way). I love my patients, my co-workers, and am constantly challenged and enlightened by those who fight for their lives. Cancer sucks, but it isn't without its gifts.

E is the same bright, healthy, growing girl-and a constant source of joy in all our lives. Our house is in need of major overhaul (floors, carpets, roof, broken garage door, screen door, peeling kitchen cabinets, accessibility accessibility accessibility-etc)... but we are content, and happy, and our lives are full. I couldn't ask for more.