Tag Archives: Seasons of Love

A Life Examined

Tomorrow, Sophie turns 6. And this blog turns 1.

I can’t end it. How could I end it?

I’ve never been sure just who the girl in the party hat is — it’s changed, really, depending on the day. The truth is that my friend Deborah named the blog when she saw Amanda Blake’s wonderful print of a little girl in a polka-dotted hat. It was that simple. I wanted to call the blog Chocolate Dance Party, in honor of Sophie’s 5th birthday mix, but my friends convinced me that would be a bad idea — too dirty. Imagine the lowlife who would seek out a blog with such a name, they said.

Ah, but I digress. It’s been a year of digressions. But has it been more than that?

I’ve never been good at going back and looking at my old work, so I’m not sure. It’s been quite an exercise, this blog. In some ways it feels like it’s taken no time at all. But the seven laundry baskets in my bedroom overflowing with toys, papers and clothes say otherwise. And I honestly can’t tell you the last book I finished.

I said I’d try to write almost every day, and this will be my 288th post, so I guess that’s pretty good, going just by the numbers. I never did learn how to size photos or do links. Every time I considered it, I realized it was that or write another post. And I wanted to write another post.

That surprised me. I never thought I’d want to blog — I tell my writing students, “Don’t give it away for free!”

But the truth is that I haven’t been giving it away for free. Far from it. I’ve been paid handsomely, this past year. When I started this blog, I was so naive about so many things. And cocky. “Step aside, world!” I thought to myself. “I will blog about my child with Down syndrome! Surely no one’s ever done THAT before!”

Ha! There are so many out there doing it (hundreds? thousands?), and doing it better. And the ones I’ve found have become my community, my support group. I love to make fun of Twitter and mock myself for wasting time on Facebook, but the truth is that social media can be a pretty powerful force, and you can use it for good as well as evil.

It’s been a year. I can feel it. I feel old. My daughters’ grandmother died this year, as did my own grandfather, the family patriarch. I walked a half-marathon. John McCain came THIS close to becoming president. Barack Obama did. After threatening for so long, the journalism industry began its inevitable upheaval in earnest. I decided once and for all to stop highlighting my hair.

And Sophie completed kindergarten. When the school year began, she insisted on leaving the house each morning with a stuffed animal. Now it’s a Junie B. Jones book. They said she’d never write her name. She did that at the end of the first week of kindergarten. To be sure, her handwriting’s a nightmare, and she can’t read more than a few sight words in a Junie B.  book. The truth is that she ends kindergarten still a head or two below her classmates — literally and figuratively.

I can’t pretend she doesn’t. Sophie will never be the same as these kids. She has exceeded all expectations this year — even those of Ms. X, who set hers high — but all you need to do is spend five minutes around her peers to know Sophie’s not really one of them and never will be, as high functioning as she is.

Don’t get mad at me for saying it; I just need to say it before you do.

When Ms. X told me she wanted Sophie to move up to first grade so she could be with her peers, I beamed. I thought that was so cool. It’s a product of the fact that I really don’t read much about Down syndrome, even to this day. It’s all an open, unwritten book for me, for better or worse. I didn’t realize the peer thing was a given — one of the rules — til I was talking one day with Sophie’s occupational therapist.

Yes, she told me, it’s a good idea for Sophie to matriculate with her peers. After all, the social aspect is most important, she explained. Special ed kids are expected to fall behind, so it’s okay to move them up even if  you know they’ll fail increasingly — that’s what special ed services are for. Sophie will fall behind more and more, but she’ll get extra support outside the classroom and that will allow her to stay with her peers.

As I read over what I just wrote, I’m not sure the part that upset me will come across to you. There was just something so clinical and matter of fact in the way the OT said it, as opposed to the way Ms. X said it. For Ms. X, I think, it was a moment of discovery, a happy thing — Sophie has friends! She should stay with them! For the OT, it was just another day on the job. (Not that I don’t love the OT — I do.)

Ah, Ms. X. My eyes fill with tears as I write this. Tomorrow, the security blanket really does get ripped away. It’s not like I’ll never see her again — she’s going to tutor Sophie this summer, we’ll have trips to the pool, even the occasional poker game. And I love Ms. Y, I really do. She’ll be a super first grade teacher for Sophie. (Assuming we get her, wink wink.)

But it will never really be the same as it was this year — this awesome, inspiring, terrifying year. As I wrote long ago, kindergarten was the great equalizer. Sophie came to it knowing so much, if only by rote. First grade will be diferent, no matter how well she’s done in kindergarten. I know that. She doesn’t, and that’s a very good thing.

Sophie. If only I could be Sophie. I’m not saying she doesn’t have her anxieties (how could a child of mine not?) but that 21st chromosome does a great job of tamping them down, if nothing else.

All of this is my way of saying, how can I stop this blog? To be sure, some things will have to change. GIAPH will have to stop reading like a bad imitation of the Nora Ephron movies I love — you know, the ones that track the character (usually Meg Ryan) through various seasons — dragging the Christmas tree in “When Harry Met Sally,” loving spring in “You’ve Got Mail.” I promise, dear reader, to quit ruminating on the holidays — quite so much, at least. We’ve been through them all, you know my position (I love holidays, or at least the merch that goes with them).

And I vow to push aside the seven laundry baskets of crap and unearth the Down syndrome Rubbermaid, filled with all the pop culture references I swore I’d discuss on this blog. I will do that, even though I can’t promise I will watch that documentary again about the man with Down syndrome who loves sex and wrestling.

I also promise to spiff things up, hopefully starting tomorrow. Links, properly sized photos — the works. If only to prove to myself I’m not such a tech dinosaur.

No matter what happens from now on, I will always remember this year. I’ve never in my life kept a journal or a diary. I’ve never tracked the days. I don’t regret not doing it before now, not really, but I’m glad I did it this past year. Maybe it’s the remnants of the flu (still!) but I got all nostalgic last night, trying to fall asleep. Ray offered to put the girls to bed, so I snuck into our messy room and wrote a batch of thank you notes for Sophie’s birthday gifts, and listened to Ray and the girls play way too raucously so close to bedtime.

For some reason, I thought of that song from Rent. OK, shoot me, yes, I like Rent. A lot. Along with the Beatles, it’s the one piece of culture (if you can call it that) that Ray and I agree on. I’m not sure if admitting you like Rent is as bad as admitting you like Cats (I don’t!  I swear! Although it was the first show I ever saw on Broadway, at the Wintergarden. OK, maybe I did like it — at the time. I was young.) but I’ll admit it anyhow.

Yeah, I know that a lot more transpired for the characters in Rent in a year than has for me, this past year, but still, I got teary, thinking of the song “Seasons of Love.” Listen to it, if you can stand it. Here’s a YouTube link.

http://www.youtube.com/watch?v=x8iTeDl_Wug

Hey, you’ve read this far already, so why not? I intend to crank the song one more time and have myself a dance party in the kitchen.

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