Monday, July 16, 2012

On who I am

I think it was my sophomore year (or 2nd year, or whatever) of college when my friend gave me an autographed DVD of Chasing Amy.

I watched that movie -- and this is an honest figure -- at least 5000 times.  I'd watch it every day after school while I was doing my homework. 

I'm not sure why I loved it so much (besides, of course, Jason Lee), but something about the movie just resonated with who I was at that moment in my life.  Maybe I imagined I was such a complicated person, and that no man could ever understand me.  Sigh.  19.  You are wasted on the young.

There's this epic scene in the movie where Ben Affleck's character pulls over the car to tell the Joey Lauren Adams character he's in love with her and it's this great romantic speech that every woman in the universe wants to hear, and you can see Adams' character, Alyssa, getting all uncomfortable.  And they fight.  Because she's a lesbian and she tells him "Being gay is who I am!"

At Phoebe's last IEP (Individual Education Plan) meeting, her teacher told Geoff and I that she thinks Phoebe will be attending "regular" kindergarten.  Also known, simply, as Kindergarten.  You know, just usual ol' school.  For regular kids.  Kids who aren't in occupational therapy, speech therapy, wheelchairs, sensory-approved clothing.  Regular. Kids.

And I looked at Phoebe with new eyes.  And couldn't believe it.

"If she makes as much progress this year as she has over the past year," her teacher said. "I don't see why she couldn't do well in a regular classroom."

And just like that, who I am was changed.

I have this group of good friends and we jokingly refer to ourselves as "special mommies".  Our kids are in the same special needs classes.  We talk about therapy.  Diapers on kids older than 3.  We talk about our kids.   We say things like "Oh, well, you know she has brain damage so we just don't know ..." and we get sympathetic eyes. 

We don't need to explain.  We ask about neurologists, how to get help for our kids, resources, recipes, wine.  We share moments of glory and moments of pain.

All our kids are different in terms of the severity of their disability.  Phoebe is definitely not as severe as some of her friends, but my special mommy friends don't mind.  We're all in this together.  This is who I am.

And then suddenly, that was gone.

I'm not sure I fit into that box anymore.

Last week a friend came to my house to pick something up and drop something off, and I got to meet her 4 and a half year old daughter.  And talking to her, and seeing how she interacted with her mom and I, I realized how completely far off Phoebe is from that.  How far from "typical".

I watched Phoebe take off her clothes and get into her pool, while her friend said "I didn't bring a towel and she shouldn't be putting mud in her pool" with crystal clarity.

The maturity level blew me away.

I tried not to cry later to Geoff as I told him my worries about Phoebe and her future.  How I see this beautiful, smart, sensitive, gentle spirited soul and how terrified I am about what the future holds.  Will she be the "slow" kid in class because of her delays?  Is she going to be teased?  Will she understand the teasing?

She's so sensitive and gentle and sweet.  She has absolutely no malice in her at all.  Well, okay, if she hasn't napped then ... sometimes, but rarely.  She's just so ... tender-hearted.

And I wondered where she fit on the scale of normal and special needs.

I know people say "You shouldn't compare" and maybe some of you are thinking that as you read this.  Yes.  Of course.  But it's what we do.  We can't help it.  We look and say "Is this normal? What is normal?" about almost everything we do, and especially our kids.

I love Phoebe for who she is.  Completely.  I just fear for a future when she'll get older and I won't be there standing next to her going "I love who she is" and someone will hurt her for who she is.  All I can do is hope that what we do here, now, will be with her when we aren't.

Yesterday at the park, Geoff was playing with Jack and Phoebe on the toys while I stood in the shade of a giant oak tree wearing Raef in the Ergo.  I saw a little girl about Phoebe's age excitedly grab Phoebe's cheeks with her hands and say "PHOEBE!" and grab her hand.  She yelled "Mom! MOM!  MOM!!  This is PHOEBE! She goes to my school!"

(Phoebe's preschool is on a regular school campus that also has a preschool for typical, but low-income children; they usually share recess time)

The girls continued to hold hands on the toys, walking across the suspension bridge.  Going down the slide.  Phoebe didn't say anything that I could tell, but she laughed.  Excited to have a friend.

And I stood in the shade of an oak tree and tried not to cry at seeing a little girl's face light up at the sight of my daughter.

And I tried not to cry when I heard her mom say to an older daughter "Oh. She must be in the 'other' class with the disabled kids."

And it cut me. 

I'm not sure how to define who I am right now. 

I guess I am somewhere in the middle on the scale of typical mom to special needs mom.

But I saw one typical little girl show kindness to my daughter.

And that can get me through today.

And, I hope, for a little while as I plod along blindly toward the uncertain future.

1 comment:

Karen said...

Beautifully written. :) On a side note, my husband also liked that movie at that age. When I was nineteen I was really drawn to Eternal Sunshine of the Spotless Mind. Interesting the things we're drawn to at that impressionable age.