Strangers

This Christmas season, Steve and I managed to bring Joel with us to see the church Christmas program and watch his brother perform in it. Later on, a friend asked me if it was hard, if I had felt like people were "watching" us, or Joel.

An interesting question... Things have sure changed over time regarding how I feel or think about the whole thing...

Right after Joel was diagnosed, need I say it was a very emotional time? For awhile after that, in fact. It was difficult to be anywhere but home with Joel. I hate crying in front of other people, and the less I know you, the less I like it. Yet I often cried at the drop of a hat, and many common situations were like a mined field where I knew chances were good I'd not get across with out having the lid blown off my tears. I even wrote a blog, back in the first months of my blogging, called "Raw" which was about going to appointments for Joel.

Being out with Joel was difficult. I never knew if people could "tell" that there was something wrong with Joel or not. Answering a simple question, like "How old is he?" put me in a conversational game of Jenga, cautiously pulling out pieces and hoping the tower would not collapse. I would answer it with "Six months" and avoid their eyes, unsure if I would see any questions there, like "Hmmm, but he's not holding his head up?" or "Why are his eyes jiggly?" I knew if I saw those thoughts, it would be my undoing and I was too afraid to look people in the eye. And the well meant comments they might may if they saw nothing out of the ordinary were just as bad. Like "He'll be walking before you know it!" Or "Treasure this time, they grow up so fast."

This was no ones fault. How could anyone imagine a random stranger with a baby would be facing what we were facing? Usually children are the best and safest conversation starter, right up there with the weather. This only made me more afraid I'd start bawling unexpectedly and really traumatize them, though that does seem like an ironic thought.

And so many events that REALLY were hard. Baby showers, children's birthday parties, pregnant friends, shopping in the baby section of the store, seeing children playing the park, the nursery room at church. Whew.

I remember a time when I was on the bus with Joel, coming home from an appointment. This must have been sometime between his 8th and 10th month of age, because he had his naso-gastric tube in. A well meaning stranger asked me what had happened? Why did he have a bandage on his face, were we in a car accident? I know longer remember what I did or said, I just remember that I had this worry or anxiety when ever I was out with him, that someone would ask me something about Joel. Not that they would "find out" that he was not "normal" or "healthy" but that I would not be able to handle it. It was not that I was embarrassed of Joel, but that I was embarrassed of myself, looking like a fool while I sobbed out of control and made everyone else uncomfortable. It made ME very uncomfortable.

The only way out was through, though. So I coped the only way I could, by forcing myself to look people in the eye and answer directly. While I try not to embarrass complete and well-meaning strangers with too much information, I don't hold back if I feel someone is "too nosey" I just get really matter of fact and tell em that my son is terminally ill. Then the worst is out there, and there is nothing left for me to worry about disclosing.

And the more I made myself go out and face it all, the less likely I was to cry. It was really hard at first. But if you say "My son is developmentally delayed and is terminally ill," enough times, eventually you can say it with clear eyes. Most of the time. I used to imagine how my tears would disconcert people. Now I wonder if my clear eyes and even voice do the same thing.

In any case, going through it and facing it were helpful. I don't think I'd be at this stage now if I hadn't have done that, though I confess that being out with Joel when he is irritable is still quite difficult. I hate having other people see him inconsolable and me feeling like they want me to DO SOMETHING and I can't. Because I really, really want to do something too. But I can't.

Most of the time, what I find awkward now is that people sometimes assume stuff, and that makes it uncomfortable for me. Now I don't wonder if people know that Joel is not your regular everyday sort of toddler. No way he appears like that. And I'm ok with that. It's just that sometimes they assume they know what has caused his condition and that is as awkward having your undies up your butt driving you nuts but you can't really pick them out in public. Pretty much.

So, at the Christmas concert a very nice and friendly lady came up to me and started chatting. She told me that her job at one time had been working with children "like him." Now, I don't mind the terminology she used. It was just very uncomfortable to me. What exactly did she mean? She worked with non-verbal children? She worked with children who didn't walk? She worked with developmentally delayed kids, or kids who had a GT?? And as I didn't know if someone at church had told her about Joel's condition, now I didn't know if she was aware that he was terminally ill or not.

So when she asked me about Joel's physio, I really was tongue-tied for a moment. What do I say about that? Because we discontinued all skill aquisition physio and now it is just comfort care physio. I finally sort of figured out that I THINK she had worked with kids with cerebral palsy (though still not sure) and that she really had no idea about Joel at all, which, if you don't know, he could easily pass for a child with CP.

These sorts of interactions I do find uncomfortable, though as I said, if someone seems too "in your face" with me, I just give the bluntness right back to them and let them decide if they are uncomfortable or feel bad or not. It's the people who are obviously trying to friendly and supportive and nice that are the worst. I don't want them to feel bad for trying, even if they sort of blunder into things with their assumptions. Of course, they also must feel very rude just asking "What's wrong with him?" And then there are those poor people who don't ask any questions or SAY any assumptions but come up to him and talk and smile and don't realize he is blind. Sometimes I tell em, "He can't actually see you, but he loves your friendly voice" and sometimes, if I think it's really not apparent to them, I just let them enjoy it and walk away.

I feel bad writing all this out for you. Because I've not really given you any clear direction on how to "handle" it if you ever happen to be that stranger.... I don't really know myself. I only know how to handle it when you are the one sitting there with Joel. But maybe I can say that you should see if the mom looks you in the eye as an indication of if she wants to chat or not. And then ask "What is his/her name?" Say "They sure are cute!" And then chat about other things. If they really want to talk about their child, they will tell you about them right off the bat. And if they don't, then maybe the weather and fall fashions and royal weddings are good enough topics of conversation. That's all I got for you, and I don't know if other parents would agree or not.

I can tell you that I can recognize a good heart, and I can promise you that I don't hold any awkwardness against someone. And really, with every other thing that comes with Joel's PBD, it's a small thing. This blog is less about giving you advice, then about opening a window to let you see what happens in my heart and hope that knowledge might somehow be of use to you one day.