Wednesday morning Ricki had a scheduled activity from 10 AM to 2 o’clock, so I took the opportunity of that impending free time to schedule a long-overdue house visit to a “fresh” mom... a mother with a new baby with Down syndrome in our city. I set up with her to arrive at 10:30, and I did go, and give her a bit of information, useful phone numbers, ideas for coping. (I am the second one to see her. At the hospital we send in a younger mother, mostly to say “Its alright to cry, but you should know that not EVERYTHING is black....”) But, that is not what this post is about.
This post is about what happened before 10:30.
I had plenty of things to do on Wednesday. Today, thursday, is a fast day for observant Jews, so I was not expecting to run errands or do heavy cleaning work today, because it is too hot here in July to run around in the sun and still fast. (I don’t mind the not eating part. It’s the lack of WATER.) And the day after the fast, Friday, is the day I get ready for Shabbas (the Sabbath)... and we have guests coming. (GRIN) So if I realistically wanted to get certain things done, Wednesday was the day. And, thank G-d, I did manage to do most of the stuff, on Wednesday evening.
What happened to those precious start-of-the-day-high-energy-hours from 8 to 10 AM?
I spent them replying to a well-intentioned, yet poorly worded article on Down syndrome in the Jewish blog-sphere. Correcting misconceptions. Protesting insensitive language. (It took so long because just as I was finishing, I inadvertently erased it, and had to start over....)
WHY DO I BOTHER? Wouldn’t it be better to let it go, and run do the dishes? My husband is sure that this is the case.
I bother because my daughter Ricki has to live in the world that is influenced by misconceptions and poor language. To my daughter it is living day-to-day with people who stare at you (do any of you have an idea what that is like, to be stared at everywhere you go?). It is living with a society where people erroneously think that you can not do anything at all. [Like the idiots who reach over to "help" when she is pouring a drink (which she can do quite well, thank you, since age two when we spent two weeks and about 12 liters of milk learning the task), the people in offices who ask me what is her name, rather than asking her, etc ad nauseum)]. And even living in a society that thinks that you are a burden, a mistake, a financial drain. Even the “Oh these kids are so sweet” remarks drive her crazy. She is not “these kids” She is Ricki. And I love her. So that’s why I bother.