Wednesday, December 3, 2008

The Awesome Responsibility

I forget, sometimes, how incredibly important "First Call" really is.

What is First Call? The Mass Down Syndrome Congress sponsors a First Call program. But essentially, it means setting up new parents with experienced parents within the DS community.

There are so many questions a new parent may have. Some are standard, some are situation-specific.

I set up my own "First Call" contact - 30 seconds after I got the call from the doctor with my amnio result, I called J to set up a meeting with her for the next day. I was lucky, I already knew someone with a child with DS.

Many parents do not know anyone with DS, which is where First Call becomes so vital. It doesn't have to be through a formal program. Massachusetts is fortunate to HAVE such a program, but there are informal ways to do it. I was also "set up" with my friend D via mutual friends in Florida. D has become a dear close friend over these 4 years. She also provided me with something most other DS family could not - a look into raising a child with DS within the Jewish community.

Ok, why am I blathering on about this? Yesterday, I was privileged to be quoted on Pam's blog, Rhett's Journey. Whenever a blog gets a link, more people find their way over. So I had some new readers yesterday (welcome, all!).

Anyway, mid-afternoon, I got an email from a nice lady with a 4 month old (Hi M!). We started the usual chatting (her daughter is facing heart surgery next week). But then she asked a most touching question:

since K. is only 4months and this DS world is new to us......
from one jewish mom to another....
what are the realistic views of her being bat mitzvahed ?


I nearly burst into tears. I had forgotten the feeling of the unknown that a new mom experiences. What will my child's life be like?

Of course I emailed her immediately with all my positive reassurances. But I was struck breathless with the need for her to hear the encouraging side to this whole situation. I have grown accustomed to saying "Sofia WILL do...." everything. But I forgot what it is like to really have no idea what the possibilities are.

Thank you, M, for your incredibly touching question, and for giving me the opportunity to answer it.

(FYI, as we are gearing up to start planning Sam's Bar Mitzvah in a few years, I am already thinking ahead to Sofia's Bat Mitzvah, too!).


Oh, a quote from Micah: as The Nutcracker began on Sunday, he perked up and said "Hey, I know this music! Wasn't it written by...Van Gogh?" ("I thought I heard it on Little Einsteins").

2 comments:

My name is Sarah said...

This is Joyce. The power of first connections truly cannot be described. You have described it so well. I look forward to hearing about Sofia's bat mitzvah one day.

Mara said...

You are welcome, and Thank you~ smile. I appreciate the reassurance that my child will to be able to do everything. And I hope to one day attend Sofia's bat mitzvah and invite you to Kayden's!