I know it’s Sunday and I usually post the Weekly Wrap Up… but I felt the need to do this different post today. I recently had a conversation with my father over the phone. Perhaps I should first state that I am very much a daddy’s girl. I always have and always will be. My dad is the kind of father who will do, and has done, anything for his kids. I am talking the man registered for college with me because I was afraid, thinking I was too old to go back. And he actually took the entire class with me. And it was a tennis class (I needed a PE credit) and my father was 200 lbs over weight! I tell you this so that you will understand that my father means no malice or harm. In fact the man does not have a mean bone his body. All he wants to do is make things better for people. Ahhh…. now you probably see where I am going with this.
The conversation we had was that he doesn’t want to read my blog anymore. It makes him sad and upset. When I write about a bad day with Jay it hurts him. I get how he feels. It hurts me too to see my boy struggle. But what my father doesn’t always see is all the beauty. I would not change one single thing about my boy. What I would change is how the rest of world reacts to my baby.
Anyway, after a long talk about how he need not feel sorry for us and that he can’t FIX Jay because Jay doesn’t need to be fixed; I ended the conversation with a huge lecture on how if he really wants to help and make things better than he can take it upon himself to educate others about Aspergers. He can can connect with his grandson any way he can. He can just listen when I need to talk!
Even though we hung up on a lighter note, I am really not sure if my dad got it. So I have been wracking my brain trying to figure out how I can really explain what it is like for us in a way that perhaps Daddy would get it more. Then it came to me. I need not try to write something when there is something so perfect already written. Below is an article by Emily Perk Kingsley published 1987. Most special needs parents have read this at some time or another, and if they haven’t then perhaps they should!
I invite you all to read it, especially you Dad, so you can see that it’s okay… we are okay. Yes some days are better than others but Daddy… It’s OKAY! I love you Dad!
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 guide books and make your 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, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. 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, 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.