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.


  1. One of the hardest days of my life was when my daughter cried because she wanted a "healthy" body. It was the first time I was able to explain about research and advancements in medicine that are happening all the time and that one day, perhaps, doctors will know how to grow nerve cells and use them to help her grow the nerves she needs. She was amazed and took great comfort it that. I'm going to remember what you've told E for when my daughter brings it up again. I'm sure she will as she begins to understand further what her body can and cannot do.

  2. Ugg. Tough stuff. Your answers were beautiful! Such an awesome,tough girl you have!

  3. You are such an awesome mama to such an amazing girl. You handle even the most difficult moments in life with love and thoughtfulness. Wishing you both the best during your good days and struggles.

  4. We want to give them everything they want. Breaks my heart. I can only begin to imagine what it does to yours. Handled with such grace. Loving her as is. Your daughter is wonderful ( obviously)! I hope her future is filled with dreams fulfilled.

  5. my youngest says the same thing....hard to know the right answer for her. She is 5 and hasn't had any surgeries yet. She calls her legs "little leg" and "big leg".