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.