Tuesday, March 1, 2011

The F-Word

I decided to finally post this...because as with most things in our life that have to do with AJ-ignoring it won't make it go away.

Ellen, one of my favorite bloggers (and whom I frequently link to) wrote this post a few months ago. She kindly gave me permission to borrow her post.

The "f" word in my life is AJ's future; it's not something I talk about a lot. On purpose. Looking that far ahead unsettles me. The more I keep trying to envision what his future might be like, the more anxious and depressed I get. For the most part, I've set my sights on the present of AJ and what he is doing, rather than what he might do someday. It's been a good thing for both of us. A healthy thing.

I don't have my head buried in the sand. We have already determined guardians for AJ and continue to work on other logistics of his future. But the thought of AJ in a home for the disabled? It makes me cry. I am tearing up as I type this, and I've had to stop a couple of times. My mind goes to bad places when I think of it.

AJ in need of a special home?

AJ without me and Jeremy?

How could we do that to him?

Who would protect him and take care of him like we do?

No, he could never go to a home.

But what if it were the right thing for him? He'll need to be independent.

Would he be able to change his clothes himself or would there be someone to help him?

GULP. How will he communicate his wants and needs?

What kind of friends would he have?

What do those homes look like on the inside, anyway?

What kind of job would he get?

How could I not kiss him every day?

How often would we visit?

And so on and so on. My mind spirals off into all sorts of irrational thoughts. And I know they are mostly irrational, given the fact that AJ is four and a half years old and still has lots of growing to do and progress to achieve.

There is a home for adults with disabilities near a store I frequent while AJ is in school. A group of residents would come in sometimes; a mix of adults with mental disabilities. I'd spy on them the entire time as I'd walk the aisles, watching them talk, laugh and enjoy themselves, while shopping with the help of their aide. I felt glad for them.

A few days after I read Ellen's post, I was at the store. And so was the group of residents. As they were checking out, I literally hid in the back of the store. Bawling. Thinking about Ellen's post...about AJ's future. Picturing AJ as one of them.

The truth is, I'm not yet at the special-parent developmental stage where I can think of this. It's still too painful. And yet, what's helped me help AJ is researching things that could benefit him. While we celebrate each and every one of AJ's small successes and moments, the fear of the future is never far away.  My child cannot communicate-effectively-to anyone-what he needs or wants. THAT, is scary as hell. While we jokingly refer to one of AJ's PT goals as sitting on a bar stool with his friends in college, I wonder whether or not he'll be in college. 

The constant back and forth is what drives this fear of the future.  I have digested and accepted that my son is Deaf and has Cerebral Palsy.  It has been years since that was introduced to my brain.  But AJ's recipe for life? Its FULL of ingredients. That seemed to be optional (even non-existent) in the beginning.  He has this, oh now this, and well, this.  Adjust. Readjust. Adjust again. Repeat. All of it makes me want to get off the merry-go-round and puke every now and again.  It never seems to stop. All of these ingredients make constant changes to his future. 

And for someone to say, "Oh, he'll be fine."  You don't know that.   No one knows that.  Fine is not, and never will be a word in my vocabulary.  Because AJ deserves more than FINE.  I want him to have an extraordinary future, not just a "fine" one.

1 comment:

  1. "I'm not yet at the special-parent developmental stage."

    You hit the nail on the head!!! Maybe we parents need IEP's too???


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