Friday, July 17, 2009

What it is like to have a child with a disability – retold by me.

What it is like to have a child with a disability – retold by me.

You are so excited, this spring you and your closest friends are going to Paris. You have spent months preparing; learning the language, reading books, shopping for all the right clothes, looking through pictures with your friends of their prior trips (some of them have been there before, but this is your first time). You board the plane, excited yet nervous – this is your biggest adventure yet. The plane starts it’s decent, the captain gets on the speaker and says those magical words: WELCOME TO DENMARK.

Denmark? All your friends go on to Paris and you are stuck in Denmark. At first you are sad, and then you become mad. But when you take a moment to look around, you realize that Denmark is beautiful. You keep in touch with your friends in Paris, but they don’t really understand. You meet new friends; some have been in Denmark for a long time and help show you around. They show you the places to go, where to see the best sights, how to find your way without getting lost. After a short time, new arrivals come and turn to you for guidance.

Sometimes you get sad to realize you will always be in Denmark, this trip was a one way ticket. But then you remind yourself of all that Denmark has to offer that you cannot find anywhere else. You realize that you wouldn’t trade it for the world

When I heard someone tell this story a few years back, I thought: WOW. That sums it up exactly. If life has led you down an unexpected road that you cannot change – hang on and enjoy the ride.

Tuesday, July 14, 2009


OK, so at the end of this post you are going to say to yourself: that was way too much information.

Kathryn is smart. She may say few words spontaneously, but behind those big brown eyes, there is a brain that is ALWAYS working! She has a strange sense of ‘if this, then that’. Example: When I walk in the door, I don’t get a “hi Mom”, I get “Bra off, bra off, bra off.” “Change shirt, bra off!” A bit strange? Not at all. You see, Kathryn notices many things: she notices if you put the jelly on the bread before the peanut butter (you’ll only make that mistake once). She notices if you are using the wrong pillow on your side of the bed (and she will rip it out from under your head to correct it). She notices if you skip a page when reading Dr. Seuss to her (at which point you have to start over). But what Kathryn notices the most is that mommy will never, ever leave the house without a bra on. I may go out with no makeup, even with no shoes, but will never go out with no bra. It is common for her to sporadically look under my shirt to make sure I didn’t put one on when she wasn’t looking. It’s just her way of telling me that she loves me and wants me to stay home with her.