Tuesday, October 8, 2013

The wide open air

Here is a beautiful picture Chad made for Lucy at my request:

It is a page from "Oh The Places You'll Go!" By Dr. Seuss. Chad has been getting more and more into art in the past couple of years so I asked him to make this picture for Lu to hang on her bedroom wall and he did an amazing job! Here's a little story about why I wanted this page in particular. 

This was the first book I read to Lucy and I started reading it in the first week we were home from the hospital after she was born. In that first week I was of course emotional as new moms tend to be with all of the hormonal upheaval, and then the added distress of Lucy not being able to nurse really had my tears standing at the ready for any little thing to set them off. The page before this page says:

"You'll look up and down streets, look'em over with care, and about some you will say, 'I do not choose to go there.' And you might not find any that you'll want to go down, and in that case of course, you'll head straight out of town." 

And then comes this page stating, "It's opener there, in the wide open air." (Sheesh, I'm tearing up as I write this!) As I read that to teeny, Utiny, less than a week old Lucy, I cried each time at the mere thought that my brand new baby, fresh from the oven, would leave me some day.  I simply could not bear it! But, as I read it to her, I also assured her that it most definitely is opener out there in the wide open air and I would not ever keep her from it.

Fast forward 21 months and we receive Lu's diagnosis. We had read that book to the point of near memorization, but after we received the diagnosis of Rett, I couldn't bear to even pick the book up, let alone read it to Lu.  After some months I tried, and I couldn't. I felt like the book had somehow betrayed me. I believed (at that time) that Lu was never going to get the opportunity to choose where she was going to go in life. I believed that she would never know how opener it was out there. That she would never experience the wide open air. So, I had gone from lamenting the day she would leave me, to despairing over her future of never getting to be free of me. 

 I'll tell you what I did...I sold that book on The moment it was sold, I instantly regretted it. I immediately felt like now I had betrayed Lu. So, I bought her a brand new copy and I wrote her a note in the front of it. I told her about all of these feelings of betrayal, but then I explained that I had bought her a fresh copy for the new dreams we would have for her. But more important than any dreams I have for her, are the dreams she will have for herself. 

So, I am writing this today because it was the first day that I didn't stay with Lucy at preschool, at all!  Her personal care aide fed her lunch and snack without me being there. I was terrified to leave her there. Not because she isn't surrounded by wonderful people, because she is, but because I do everything. I am the one who takes care of her the majority of the time. I suppose I'm a control-freak about her care and about being the one to do it. But...this is her first breath of the wide open air. If I wanted to be selfish and do everything the way I want to do it, I'd never send her to school or away from me at all.  But she likes it and she deserves the openness, just like everyone who wants it does. 
My big girl.

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