Gregory

Emily Perl Kingsley wrote:

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 vacation trip - to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. The Michelangelo "David". The gondolas in 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, digusting, filthy place,full of pestilence, famine and diesase. 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 have never met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice 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 get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

I love this writing. It grounds me every time I get sad or begin to again mourn the special needs my Gregory has. When I am faced with a new challenge with him, or a new reality. And as he gets older, the realities and challenges become harder, and more difficult to take.

I sat the other night and thought about the possibility that he may never be able to live alone. And that cold stone condensed in my gut...who will care for him? How do I cultivate the loving responsibility in my other children that they must always take care of their brother after Tony and I are gone? How do I raise them to understand him, and not resent him? How in the world am I ever going to be able to leave this world if he isn't independent...

And, as fears often go, my mind wandered into the irrational and ridiculous. The thought somehow hit me that if Gregory were to be taken from this world and me as a child, (God forbid), who would take care of him? I had that image, that I mostly blame Hollywood for, of him emerging from the light toward heaven, and he's alone, and confused. My spirituality makes me believe that an angel, or Jesus himself would be waiting for him, and that moreover, his autism would have vanished. But my mama's heart was terrified that he'd be exactly as I know him now, and lost. Yeah, I'm pretty sure I'm half nuts for this train of thought, but it scared me just the same.

My sadness/stress/anxiety/worry over Gregory is recently renewed because his doctor and I recently decided to up his dose of risperidone. So, as usual, I researched the med again, to remind myself of the side effects and the general use of the drug. And, as usual, it all scared me to death. The internet is a wonderful resource, but it has the ability to scare the hell out of me.

I weighed the risks and benefits of putting my 7 year old little boy on an antipsychotic. I feel that the benefits outweigh the risks. But it's still not an easy choice. It's not black and white. It's not a clear cut path. Will I feel it was a good decision, even if it does help him, if he ends up with a serious side effect some day? Will HE be glad I made the decision if he ends up sicker? Will the benefits it's had NOW be worth the possible long-term effects LATER? I just don't know...

I'll wrap this note up. I'm going to put my babies to bed...

My enchanting, whimsical four-year-old daughter who still believes she'll be a princess when she grows up and still finds magic everywhere. On seeing the sparkly trails the snails leave behind, she stopped on a sunny day and pointed to the sidewalk. "Oooh look, Mommy! There's MAGIC on the ground!"

My amazingly brilliant six-year-old son, who is struggling to find a balance between the beauty of his mind and how uncomfortably far ahead of his age it is. A child with a wit and sense of humor that amazes me and makes me laugh insanely every day. My sister asked him, "Nick, what do you want to be when you grow up?" Nick replies, "A MANIAC!" Some days he's well on his way...

And my Gregory. My seven year old angel, with a stubborn streak a mile wide, and eyes just as big. And a heart that dwarfs both.

You know, 99.9% of the time, I love Holland just fine. But I would very much have liked for Gregory to see Italy.