Special Needs

Thursday, October 13, 2011

Lately I've had something on my mind. A question which I've asked myself repeatedly since Beatrux died --

Am I the mother of a special needs child?

Have I got the right to call myself that?

Tonight I did. The words rolled out of my mouth flawlessly. But at the same time I was mentally berating myself. Telling myself that I wasn't really the parent of a special needs child. I don't know what it's like to change a feeding tube, or to have to fight for overnight nursing.

Because she died.

And my experience doesn’t count.

The original comment came up in conversation with a customer at the retail store where I work evenings. He was a young guy who was telling me about his plans to move to a big city. He just got his first “real job” working at a children’s hospital with special needs kids.

He was so excited. I kind of jumped in there -- I was excited for for him.

But I also wanted to make it real for him. I wanted him to see this opportunity as so much more than just a job. I wanted him to visualize how life altering his services would be for some family. I wanted to put in my two cents worth, as a parent….

But did I have the right?

We certainly spent more of my pregnancy expecting a baby who would have difficulties than one who would live life without the challenges associated with her differences. Had she lived she would have needed so much more care than a typical babies.

She was most certainly a special needs child, and I am most certainly her parent -- but am I the parent of a child with special needs?

I’ve gone back and forth about this and I can’t decide.

I am her parent. But does carrying her qualify as parenting?

I can tell you the ins and outs of the different medical specialties. I have a long list of doctor’s names that I saw…. Does that qualify me?

Does knowing the names of the rare and lethal defects that other mothers carry with, and being able to talk to them about it make me the mom of a special needs child?

Am I just an interloper into this game?

Because I didn’t have to work with therapists, tubes, and wheelchairs.

Because she never came home.

Where does that leave me in this equation?

I know that in relation to her, I am not the mother of a “normal” child (whatever that means.)

So, can anyone tell me- am I the mother of a special needs child? Are any of us who choose to carry to term with these awful anomalies?

I think sometimes, I am the one with special needs.

I need to have acknowledgement that she lived, and her life was worthwhile. That all of this pain and suffering is valid and useful.

I grasp on to this title, because it allows me to be a part of a bigger group of people whose babies live.

But do I deserve it?

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