Susan's Blog

Friday, September 5, 2008

Noticing What Is There and What is Not

Yesterday we all felt so good from our day that we went out to dinner to celebrate. I picked the Cheesecake Factory, because it is the best of the chain, kid-friendly restaurants: you can actually fool yourself into believing that you are in a real restaurant. You can get a pretty nice glass of wine, beautiful salads, and there is really nothing tacky to detract or distract.

What detracted for me was the smoothness. The simplicity of us. The family as a foursome; a non-special-needs foursome. How easy, how strangely easy. For while I was filled with a lovely, creamy happiness and sense of accomplishment from my first day on the job, basking in the nachas of Ben’s (mostly) great first day, proud of Max for going on an 11 1/2 mile bike ride on his last day of freedom, and happy for Ned having attracted the notice of one of his heroes (this is a terrible run-on sentence that I would never allow my students to create), …

…I thought of Nat.

Sometimes it feels suddenly like we are pretending we don’t have a fifth person as a part of us. That there is just no way to feel complete, for it to be supremely perfect, because even when I’m not thinking about him, I’m suddenly thinking about him. I’m afraid of my happiness because it makes me feel disloyal sometimes, when I realize that I am no longer sad about Nat.

I guess I just miss him, and I don’t know how I’m supposed to deal with the moments when I’ve realized that I wasn’t thinking about him.


I humbly offer my usual apologetic preamble about sounding uneducated, crass, patronizing, insensitive, or any other potentially derogatory thoughts I may offer as a parent without a disabled child.

I believe that many people have experienced a moment or two when a subset of the larger clan has gathered, and it’s created an “easier” or different experience. Of course the recognition of that fact is immediately followed by a heart-gripping guilt attack.

The most common scenario is likely to be a couple out for an evening without their young child or children. I can attest that some people (myself not included) will make frequent calls home to make sure everything is under control, nobody’s fallen down the stairs, the house is not in fact on fire, and that Amy Winehouse is not pounding on the front door in a drug-induced stupor.

Personally, I’ve had that happy-then-guilty feelings about one or more of my three children, my sister, my mother, and a particularly “interesting” uncle.

I offer only a shrug, and opine that you’re perfectly normal. For once.

Carpe … moment. Had I known whatever the Latin word for “moment” happens to be, that would have been a much cooler closing statement.

— added by Don on Friday, September 5, 2008 at 11:24 am

I sometimes think my guilt is more about passing as “normal” when we used to receive so much attention (positive or negative)for being different.

I used to think that I didn’t like the stares. Now I think that passing is just as hard. It is hard to instantly connect with an unknown family across the room with just a glance knowing that we “get” each other and harder to connect with “normal” families because our families difference is not so obvious.

Like I said, I used to imagine what life would be like without the stares, but now I kind of miss them.

— added by Anonymous on Friday, September 5, 2008 at 7:09 pm

I have nothing of worth to say but I have read your words and thought of you today.

— added by DJ Kirkby on Saturday, September 6, 2008 at 3:19 am

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