Tuesday, June 30, 2009

I Really Needed This Right Now

It's such a good thing too. I once read an essay about parenting a special needs kid. I'm sure I've shared it here before. However, I can't find the post (go figure, it was before I figured out tagging I'm sure) so I'm reposting in an easy to find clearly labeled and tagged post. Here is the essay and then I'm going to talk some more.

Trip to Holland
Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this:

When you're going to have a baby, it's like planning a fabulous trip to Italy. You buy a bunch of guidebooks and make your wonderful plans: The Coliseum, Michaelangelo's David, the gondolas of Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says "Welcome to Holland."

"Holland??" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy. But after you've been there for a while and you catch your breath, you look around and you noticed that Holland has windmills - and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away, because the loss of that dream is a very, very significant loss.

But if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

This past couple of weeks has been especially hard for me and James. Yes, I know that should probably be "James and I" but I added James to it as an after thought and instead of just correcting it, I'm writing this drawn out sentence explaining it instead. Yeah, it's been like that.

Going along with the multiple doctor visits for me and the stress and anticipation of the twins upcoming birth and the planning for the kids to go to Wisconsin for a month with their grandmother, we had the meeting to get the results of James' psychological evaluation. I thought those results would bring me some semblence of peace. Sadly, I was wrong. They did nothing but aggitate me even more. It seems that now that I know what is wrong about James, I've stuck myself on that.

The difficulties that present themselves in our day to day lives are not any different now that I have that report than they were before I had it. James has not changed one iota since I was handed that sheef of 19 pages detailing the results of the tests and what it all boils down to.

Sadly, the one that has changed is ME. I am stuck on the things he "can't" do, the things he finds "difficult", and even though they are exactly the same as before, I can't let them go. I am beating the dead horse. I always felt that having that report would give me freedom. Freedom to try different things. To look at it and say "Yes, that is what is going on, now I know how to help him!"

The difficult about always being right is that in instances like this, what we have been doing is the right course of action. It's mind numbing and stressful and makes you wish you could smash your head in to the wall. And it seems to make not a damn bit of difference with James. It's the "right" course, it's the one I knew about all along. It's the one I asked to have verified. I so wanted to be wrong this time.

So now I have to get out of the rut I've stuck myself in these past few weeks. I am so angry and frustrated. Not at James per se, but at what he was born with, how he's wired. I want to scream from the tops of the highest mountains about the unfairness of this all. How it's so unfair to saddle a child with this, and to chain his mother to it as well.

Homer told me "I can't believe he is that bad off." He told me I was lying. That I'm a horrible parent. That I don't know what the hell I'm talking about and that HE could definately do a much better job. I know he's an idiot. He can't even MAKE an effort to spend time with his kids. James calls him more often than not. However, I'm already feeling this way, feeling as though I have failed this child miserably, and I'm only making things worse, and here is the stupidest man on the planet (after Katy's dad of coarse) reinforcing all of what I'm going through.

Jason is as dumbfounded as I am. However, Jason also gets "nice" James. I get the constant mean angry chip on his shoulder I hate you because you are the authority James. So he gets some kind of relief.

I've been told that James will never reciprocate on the feelings. When he says things like "I love you" and "I hate you" to him, they are the one and the same. They are buttons to push to get a reaction. He just doesn't understand the difference. This is through no fault of us trying to teach him, it's just how he's wired. Every time I hear "I hate you" and "you are so mean to me" and "you make my life absolutely miserable" and "you hate me and don't want me" even though I KNOW those are buttons, they hurt because they are reinforcing my own doubts, my own fears and feelings regarding him.

I look at him and his outward appearence is that of a "normal" boy. He's very small for his age. He has no muscle on his body. He's stick and bones. But aside from that, he looks "normal". I know looks can be misleading. However, I want him to BE "normal". He never will. I have to find a way to give that up. That desire. Though I don't think I will. I'm rather certain that it will always be there, in the back of my mind.

There are plenty of GOOD things about James. However, I just get caught up in the day to day grind that I forget to pay attention to them. That I forget that sometimes you have to go looking for them. I need to stop, and look for the windmills and tulips and Rembrandts in James. They are there. Once I can find them, then I can share them with him and maybe they will help him in a way like they help me.

Prayers and blessings everyone. I hope you remember that no matter where you land, with a little exploring, there is beauty in every thing and every one.


DRS Are The Best said...

What a beautiful post and thank you so much for sharing it. I'm not in your shoes -- I don't know exactly what it is you are going through -- but I understand your general sentiment because it's EXACTLY how I've been feeling. The James you crave for is in there somewhere -- he does love you in his own unique way. Just keep heart and continue to love and care for your son as you are already doing. We all have bad days, and you can take solace in that you are not alone.

All the best!

DRS Are The Best said...

Commenting about the Trip to Holland essay -- the funny thing is that in my "More Than Words" class last night, the teacher handed out the same essay. As soon as I saw the title, I smiled and told her that I had read this recently on "a friend's blog".