This blog was mentioned in the New York Daily News, yesterday. I wasn't really expecting it. A friend of mine, Tom had referred an email with several questions about blogging as a parent with a "disabled" child. I dutifully answered the questions; one of my points made there was, as Tom pointed out in his blog yesterday about the term used in the article - "Down Syndrome kids" as opposed to "kids with Down Syndrome" (they are people first!) - that this blog was about lots of stuff, being Emma's Dad was only part of it. I agree with Tom that this article was probably edited severely; there was nothing resembling the info that was asked for. At any rate, if you're here as a result, and are interested in stuff relating to being a parent of a "disabled" child (I'm not touching that one at the moment), you need to dig back a little ways. I've been (obviously) doing some different stuff, lately.
So, I got a message yesterday saying that my blog was often thought-provoking, but this person's first impression to many posts was that I should "stop whining and move on." I've thought a lot about this. I'm going to say publicly that this person has infinite credibility with me, and has earned the right to speak their mind, perhaps as no one else I know. This does not change my relationship with them one iota.
I guess it's time to state what I think should be obvious to anyone paying attention. I cannot move on. I'm stuck. I'm a middle-aged man with a seemingly fine intellect, a mind "all dressed up and nowhere to go." Four months after my happy life was kicked in the stomach, I entered a special circle of hell where I was (and still am) allowed to daily see the fruits of my previous career wither and die before my very eyes. I have participated in the Employee Assistance Plan. I have seen a psychologist. They all tell me that I'm coping very well, and, while I'm welcome to schedule another visit, they don't see any major problems. I guess they didn't want to hear me whine either. I have pursued just about every available angle in terms of finding suitable employment and support for myself and the 3 other people that depend upon me, to no avail. I have taken anti-depressants. I have spoken with my pastor, who looks across the table at me and says that he has no answers. I don't think anyone has the slightest idea of how very angry, powerless, and alone that I feel. If I'm whining here, it's because I have no where else to go.
But I am trying to move on. I've been slowly divesting myself of some of the things that have only served to magnify this anger. I'm trying to tell the truth. I think it is hard for others to understand. Part of the problem is that this becomes ultimately isolating. I think "polite society" was a major force, in the past, at making disabled people invisible. Although great strides have been made, I can't explain to you the emotional energy it takes, sometimes, just to sit in Taco Bell with my daughter, making inappropriate noises and just being herself, realizing that you are now the "floor show." Call it courage, call it stoicism, call it "making the best of it", but the energy this takes has had the practical effect of cutting my families' net output in half. I'm sure that many looking at us from the outside don't understand why we don't do more, but I'm also pretty sure that they really don't want to know why, and that is that it's just too hard. It hurts, over and over, and I increasingly don't feel like being a masochist, most days. If that's "copping out", my moccassins are size 9 1/2.
I love my wife, I love my children. We have a home together that "ain't exactly Ozzie 'n Harriet" (name that movie, now), but I'm happiest when we're together. We're working hard at trying to figure out what this all means. Some of the outcomes are surprising me. Some of them aren't where I'd necessarily want to go, and I don't know where we're headed, exactly, but the status quo 'ain't happening' for us.
I think that's what I'm trying to get to, friend, and why I'm doing both this blog and not writing you personally. I think I am moving on, although we both may not like what I'm becoming. You've stuck with me through a lot, so far, and I want to continue this journey with you. I need you more than you realize, and you'll never know the depth of my gratitude. Your message has prompted me, and I'll try not to whine. Perhaps one man's whine is another man's whiskey, or something like that. Besides, it's part of being a curmudgeon, and who, I ask you, who is going to take Any Rooney's place - he can't live forever, can he?
