Month: December 2018

I was shown this a while ago, but didn’t appreciate it until recently. Written by American author and social activist Emily Perl Kingsley in 1987 about having a child with a disability:

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.

It’s the most wonderful time of year again! Christmas trees are popping up all over now, I’m sure this weekend will be a popular weekend for trees going up 🎄

When I was a little girl, I remember being out with my dad and playing ‘spot the Christmas tree’ where we had to find all the trees in houses and see who could find them first. I tried to play this with my son driving home last night but I couldn’t get him to play. It made me sad. I remember the excitement of Christmas when I was young and was so excited to experience this with my own child but his awareness is just not there. He loves to look at all the lights, so I was slowing the car down to let him enjoy them, but I couldn’t get him to engage with me to play. It could just be that he was enjoying looking out the windows and seeing lights. Maybe next year he will play with me. In the meantime, I will enjoy spending time with him looking at lights.

I’m trying to stop focusing on what he isn’t doing or can’t do, and focus on what he is doing. It’s hard when there is a whole world of fun out there I want to share with him, but we will take it a step at a time ♥️