Tuesday, September 11, 2007

This is WG.

I never set out to do this.

I never set out to be the parent of a child with special needs.

When D. was in the NICU, when I was first learning that language of despair, I remember thinking it was like I had suddenly gained access to an exclusive club I never wanted to join in the first place. But back then, after the initial horrors had faded, after each breath was not so jagged it threatened to tear my lungs apart, I thought that one day, I would leave the club behind.

Isn’t that a terrible thing to say?

It’s like I somehow felt (as I’m sure most parents of kids with special needs do, at least late at night, in the dark) that my child wasn’t really supposed to be grouped with… them. That someone, somewhere had made a terrible mistake. That we would get things sorted out, get a little therapy (for him, for me, what’s the difference?), and he would be Normal.

I’ll admit that the first time my sister-in-law told me that D’s “social motivation takes him right off the spectrum,” I liked the phrase, but I didn’t really understand it. But a week or so ago when I said it for the eleventy-billionth time (hey, I like to SOUND smart even if I’m not ACTUALLY smart), I realized that I knew exactly what it meant. And it describes D. to a T.

I have learned an enormous amount about disabilities, delays, the language of it all, the theory of it all, the reality of it all. Needs, special and normal, neurotypical, typically-developing peers. Floor time, ABA, hypotonia, perseveration – these terms are as familiar as D. is to me.

I checked out a book from the library two weeks ago. The Child With Special Needs. I set it next to my bed and didn’t open it until the night before it was due. It was so good that I went out and bought a copy the next day, and I’ve been working my way through it. It’s amazing.

And somehow, somehow, this is what I am doing. This is who I am now. I think a lot of the time that I am not very good at it, but there are times when I stop and think, Holy shit, this is who I am. I am D’s mom. For nearly four years, I have parented this child, with all his needs and normalcy. I have fought battles and wept and smiled bravely and laughed with unadulterated joy and felt horribly alone and pitied myself and ridiculed myself and thanked God for every moment and raged at cruel Fate for her inequity.

This is not what I imagined.

This is not what I wanted… and sometimes it isn’t what I want. But most of the time, it is what I want, even when I want it to be better.

8 comments:

Mary P Jones (MPJ) said...

Can I say me too?

And I'll have to take a look at that book...

ella said...

You are clearly an amazing woman and an amazing mother, to D. as well as your other children. I am sure that every day has its struggles, but you manage to face them without losing sight of the fact that every day also has its miracles.

Shana tova, WG, to you and yours.

lisa said...

Amen. I could not have said it better myself. The older Julia gets and the more "her" she becomes, the less time I spend imagining things any other way. But that doesn't mean I still don't have my moments.

Anonymous said...

Beautifully said. As a mother of a child that has Sotos like symptoms (in the process of being diagnosed) I feel the same way everyday. I feel like I am being punished for something some days yet some days I feel like I have the greatest gift. I find it's a grieving process, letting go of that image of the perfect child and childhood and accepting what has been given to you. Thank you for an informative, funny and honest blog, WG. I read it everyday and it has helped me immensely!
kebpo

Vandychick said...

I have been amazed with both you and D from the moment I found your blog. I am happy that you seem to have found your groove, even if it's not what you expected from life.

I love the book you mentioned too. However, the bloom is off the rose for me when it comes to the author. He evaluated my son and the experience was so awful that I blogged about it.

I don't know where you live, but I would think twice before I took D to see him.

Dee said...

Can I just say that I have no doubt that you are wonderful--both who you are now and what you are doing. Like the others said, being a parent comes with every day struggles and joys, both of which you manage with aplomb and verve.

Bravo for a job (x4) well done.

Shana tovah, indeed, to the entire WG clan.

Lisa b said...

Hi its me lisa b working may way through your archive.
I tried to find this book on amazon and its not coming up. If you get a chance can you send me the author.
thanks

Kyla said...

Found you through Lisa B. I know that stuff, too. It is kind of surreal. My five year old (typical) knows all of that stuff, too, because of his little sister. It is a whole new ballgame out here, but the game is still exhilarating.