Christmas

December 28, 2016

Christmas

Christmas has always been difficult for me since the kids' were diagnosed. Initially I tried to push the sorrow away with sparkling lights and gifts. However as Waverly & Oliver's disease progressed, their interest in the holiday diminished. Oliver hasn't shown any interest in presents for years, he doesn't notice the Christmas lights and I don't think he spotted the Christmas tree. Our life gets quiet as those around get so busy with preparations.

We attended Christmas Eve service and (thank to his iPad), Oliver sat through the entire service. We decided to go to Founding Farmers for dinner. It had been a tradition in the past to go there and then walk to see the National Christmas Tree. We had a lovely dinner and it felt comforting to be surrounding by tables of other families celebrating the holiday together. Christmas night we took Oliver to Meadowlark to walk through the gardens and see the lights. It was a wonderful way to close out the day and I think it will become a new family tradition.

Comments

Welcome to Holland

By 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 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.