Friday, April 2, 2010

99% of the time... or maybe 80%... ok, I'm not 100% sure of the percentages, but lets just say MOST of the time I am totally at peace with Esme's autism. I am totally at peace with who she is and what she can do.

I don't define Esme by her autism, because anyone who knows her can see that she is so much more than that. I love her feisty spirit. I love the way she yells "Mama, Mama, Mama!" whenever she is upset, even though she calls me "Mommy". I love the way that she takes her clothes off as soon as we walk in the door and puts on her princess dress up clothes - every time. I love the way she always matches her dress up shoes to her dress up dress. I love the way she is becoming her own person - hating all the clothes I like her to wear and pitching a fit when I try to put something brown or green or blue (read: not pink or purple) on her. I love the way she has become so far removed from who I am and who Cameron is and has totally and completely become who SHE is.

But I would be lying if I said I didn't want more for her. I want her to be able to do anything she wants in life. I want her to make and keep friends as they get older and more sophisticated in their social skills. I want her to be able to tell me what she is thinking and what she is planning. I want her to feel comfortable in her own skin. I want to be able to assume that she will be able to live an independent life. I want to be able to assume that she will have the opportunity to become whoever she wants to become.

Its that part of autism that drives me crazy. I feel like I can't prepare myself for caring for Esme when she is an adult because I don't know how far she will progress. I can't totally enjoy her as-is when everyone is telling you that more intervention means a 'better' adult outcome. I don't want her childhood to be seen only as a precursor to adulthood - a time of therapy and work to get to the part of life that 'really matters'. I want her childhood to matter, and to be whatever she wants it to be. But on the other hand. I don't want to short-change her and not give her every opportunity to succeed.
Sometimes I do wish I had a crystal ball so I could look into the future and see what it holds for Esme. Because if she is living in a group home and volunteering at the Humane Society, if she is living with a roommate and working a simple job, if she is in university getting her PhD, I would be ok with all of that. It's the not knowing that makes me crazy. Maybe not so much not knowing as not-being-able-to-assume. Or dream.

But Esme keeps us living in the present. To Esme, there is only the present. And so we spend our presents dancing to "Tale as old as Time" (or "tins-ol-time"), playing with 'prin-tense' dolls, watching 'Beauty Beast', and matching our purple shoes to our purple dresses.

One thing I am sure of is that this is not what I was expecting when I was expecting Esme. This is not the life I planned. This is not the child I imagined.

She is 100% more wonderful than I ever thought she would be. And that is one percentage I am sure on.


Anonymous said...

Oh my god she's huge..
that is a fabulous dress Ezzer.

LouAnne said...

Jane, you are 100 percent the Mama Esme was destined to have, and I'm sure you are 100 percent more than any sweet child could ever wish for in a caring, amazing parent.
I am keeping you all 3 close in my heart and in my prayers as you travel this journey with your little Princess girl.