Finally! A post by Michael.

Get ready folks . . . the man finally speaks.

I don’t very much like my wife’s compulsion (sickness?) to blog—, and she has been encouraging me (read: bugging the crapola out of me) to blog about something related to Finnian, Down syndrome, my view, or whatever. So, I had some experience today that might be worthy. I got to try on a Down syndrome suit. It was very heavy and sweaty. Oh wait, that’s for the pregnancy dot Org blog. Did she tell you I got banned from that site on my first day? And now I’m listening to her yell at Lilah, my sweet baby girl. So what if she pees on our nice wood floor?

Ok, seriously now . . .

We live near a Ralph’s supermarket. I have no idea why anyone thought Ralph’s was a name particularly well suited for an entire chain of supermarkets, but Ralph must have really liked himself or he was just a really cool guy. Where I grew up, in a small village in New York (yes—a village!), most supermarkets and small grocery stores seemed to have nice German-Jewish last names, like Waldbaums, or Kreigers, and Food Emporium (and I worked at two of those). Here, it’s Ralph’s, and at one time there was Safeway (to reassure us the food is safe I presume), and Lucky (as in “you’re lucky you shopped here, the food is safe.”) When they were still around, I preferred to shop at Lucky—it was a little more thrilling than shopping at Safeway—like there was some gamble in trying to be Lucky. Safeway—that was for people who put their money in slow growth and low risk mutual funds. But these days, I shop at Ralph’s. It’s right down the block. I don’t know if I’ve ever seen the actual Ralph, but if I had to guess, I’d say he probably has a moustache.

So, at “our” Ralph’s, there is a woman whom I will call Linda (that’s not her real name)—one of the persons who bags the groceries. I’m no expert, but she looks like she obviously has Down syndrome. Today, like many other days, she bagged my groceries, just a six-pack of cranberry juice. I had just left the doctor’s office after sitting for the better part of the day getting a chemo drip (you guys know about that, right?), and after I walked out of Ralph’s I was starving. So I walked a few stores down to the Chinese fast food place, and ordered some food. I decided to eat it outside in front of the restaurant. As I came walking out, Linda was approaching the same area. I figured she was off work now, and I summoned up the nerve (with the help of the “off” feeling I was having) to just approach her. I asked her, “Can I ask you something? I don’t mean to put you on the spot.” She said “Sure.” And I asked her if she had Down syndrome, she said yes, and I told her that we have a baby who has Down syndrome and did she mind if I asked her some questions. She said she was waiting for her ride, and agreed, and we sat down for about ten minutes and talked.

I told her I really had no idea what I wanted to ask her, but that I just wanted to connect with someone—maybe on Finnian’s behalf in a way—who had Down syndrome. And I really didn’t have any idea what to ask her when we sat down; I really had just put myself in the position of talking with her, and the questions just came out anyway.

She said it was good that I was asking questions, and that I should not feel like I’m insulting her or saying something bad by asking her about Down syndrome. And as we started talking, I really didn’t feel too uncomfortable asking her questions. I generally asked her if she lives alone (she said no, at this time she can’t afford to, but thinks that she probably could), how old she is (30), where she went to school (at one of our local high schools, but in a particular program), and when and how she found out she had Down syndrome. This question appeared difficult for her to answer. She said she had Down syndrome ever since she was a child. I told her I understand she was born with Down syndrome. I tried to use my paltry deposition skills to help her understand the question, like asking her if she remembers her parents sitting her down and informing her. She said she didn’t think so. I don’t know if it was because she doesn’t remember—maybe she never thought about it, or maybe she didn’t understand the question.

I asked her if kids made fun of her in school. She said “oh, yes.” I asked her how she dealt with it. She said she would cry. She gave me a couple of examples, like some group of kids egged on one kid to make her spill her soda all over herself at the lunch table. I wasn’t trying to torture her with any bad memories, and now that I think of it, that might have been a question driven by a selfish purpose. It was just what came out.

For me it was almost a way to have a conversation with Finnian in the future, or an older sibling of his. If I want to gauge some things for Joey in the future, I can just look to my own past and what it was like to be a boy at different ages, and I can even bounce stuff off of Joey’s older brother Kevin as a reaffirming gauge. But no one in within our family can fulfill that role for Finnian. And we can read endless books on the subject, but nothing takes the place of just interacting one on one with another person to not only ask questions, but to watch their face as they react and answer, and to navigate through the conversation, adjusting in real-time to whatever limitations are presented by the person with Down syndrome’s capacity for comprehension, like rephrasing the question about when she realized she had Down syndrome—I guess a pretty intricate concept whose understand I would take for granted—to help her understand it. It was a challenge, and I’m sure it can be, and will be, frustrating at times, but I know that it will also have a positive effect for all of us in our family, and mostly for the rest of our children; I think that making yourself adapt to another person’s comprehension and language abilities, to help that person understand—as well as trying to understand that person—probably makes one less egocentric, a better communicator, more tolerant, and empathetic. I am glad that our children will learn those lessons early in their lives. The world could use a few more people like that.

As her ride came and picked Linda up, I thanked her and had a brief fantasy that I would bring Finnian to Ralph’s tomorrow and she would touch him, as if getting his first true welcome to this world from a great elder who has an understanding that neither I nor my wife have.