Saturday, September 28, 2013

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

the prairie and elle

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.

Saturday, September 14, 2013

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. 

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.