Wednesday, August 1, 2012

About a month ago, we thought that Lydia might have started to find her voice, as she was making sounds as she exhaled - I thought it sounded like humming. The speech pathologist at Sick Kids corrected me and said that sighing or moaning are not considered vocalizing. Even if it was sighing, it was sound that she was making. She has been fairly silent since that one episode, until this week. We heard small sounds when she was laughing on Monday. This has continued, and today, as Grandpa was teasing Lydia, she smiled broadly and then started to laugh with some audible sounds. As Grandpa continued, so did Lydia's response. In her therapy sessions, she is sometimes playful. We are grateful that her communications with us are often smiles and delight.

While we would never have chosen this road, we have accepted the journey we are on, and we are finding the peace that passes all understanding. There are moments of beauty, hope and love along the way.

A friend shared the following analogy with us, and while it is not a perfect fit for us, it has many meaningful connections. It is like we have a newborn again, and we need to relearn how to care for our daughter. I recently spent time at Holland Bloorview learning how to give Lydia all of her meds, injections and feeds. And yes, I am quite adept at diaper changing again! Many of our dreams and plans for family have changed. Our fast paced life of activity has slowed, and we are finding beauty and serenity on the road we are travelling . Life goes on and we have learned to see beauty in ways and in places that we would not have been able to see with our pre-accident eyes. Life is precious.

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.

by, Emily Perl Kingsley, c1987 by Emily Perl Kingsley. All rights reserved
Thank you, God, for Italy, and for Holland, and that you dwell in both places.