Wednesday, October 14, 2009

Teachable Moment

Seems I'm running a day behind, so two again to catch up. This blog-every-day commitment is a little fraught with indecision. I have some longer, heavier things I want to write about but haven't had time/energy to do so; there the thought that I should be writing about Down Syndrome (since it's DS Awareness Month); and, well, my memory sucks. Therefore, when something strikes me that I could write more the time I get to the computer to write, it's gone.

One thing that seems keep popping in my mind (hooray! it stayed) was an incident that happened a couple weeks ago. I finally got my act together enough to go to a knit night at a local yarn store. This was my first time and after finding a seat, I sat quietly, only making desultory comments here and there. Across from me (it was very crowded) sat a couple of younger women discussing various things. It was obvious they have some sort of personal friendship and so were chatting in such a way. One (we'll call her ScarfGirl) was debating whether she could possibly be pregnant (but it was way too soon to tell) or was she just sick?. The other (SweaterGirl) had a child (son?) and was reliving her pregnancy symptoms and (I think) sharing about plans for siblings.

Now, I tell you this because if you were in the room, you would have heard the whole thing too. It wasn't as if I was eaves dropping. The store is small; we were less than 5 feet apart. ScarfGirl continued to dissect every possible symptom while also hypothesizing about what it would be like if she were pregnant, clearly torn between wild fantisizing about it being true. Eventually, she said to SweaterGirl, "I just worry about Autism or Down Syndrome."



I said nothing.

I wanted to, but didn't. It would have been rude for one thing. Even though it was crowded and and the conversation was clear amid all the other conversatiosn going on, it wasn't my conversation. Also, I want to return to this group again and I don't want to be THAT mom/woman who had to teach a lesson about Down Syndrome.

I still don't know if not saying something was right. It felt like I should say something. Also, what I would have said probably would have scared the crap right out of her. Oh, I wouldn't have talked about all the super scary things they tell you are possible with a diagnosis of Down Syndrome. I would have told her that of all the things that can happen to a child, in my opinion only, Down Syndrome is one of the least scary conditions out there.

Ever heard of Trisomy 18 (Edward's Syndrome)? Go here and read about Eliot Mooney's life, then go watch this video. I triple dog dare you not to sob by the end of it and know that Matt and Ginny Mooney wouldn't take a child with autism or Down Syndrome in less than a heartbeat.

Or Heather and Mike Spohr, who only knew their dauther for 514 days. Five Hundred and Fourteen. As a parent, you know that this is but a moment in the lifetime you were supposed to have. When their Madeline died earlier this year, prematurity was one of the contributing causes. Heather writes about every parent's nightmare. Half the time I usually swear that I can't read any more because it's so heartbreaking.

Or what about Alexa Stevenson who writes about her surviving twin Simone, but who lost her son Ames.

These are just three blogs from families who have suffered the death of a child. What about all those parents who think they have a pass because they passed their amniocentsis then find out their child has delays, injuries, illnesses.

What is most important, and what is universal to all parents is that being E's mother is not different than being M's mother. That the dianosis is not the child. That as the mother, you love, you worry, you hope, you become frustrated, you dream: you love, you love, you love.


Anna said...

LOVE LOVE LOVE what you had to say today. I too go to knitting group and well.... someone overheard about our adoption of a little girl with Down syndrome. WOW did she hurt my feelings. Of course the rest of the shop knows me really well and has been rooting for us. So I had the comfort of knowing she was making a fool of herself in front of everyone in the room. Open mouth, insert foot. How many times have I done the same thing. Knowing, or thinking I know all about a certain thing..... sigh. If it were that easy you know?! So really now I feel bad for her. I knew she was ignorant and choose to let it slide right on by. I mean, her opinion isnt going to change us or our decision. But thier opinions of her.....

Maya said...

Great post. I couldn't agree more. It's really hard to know what to say during those "teachable moments." I'm frequently kicking myself for what I didn't say (sadly they happen too often).

Anyway, very well said. People are just so freaking ignorant.

My name is Sarah said...

This is Joyce. I am Sarah's mom. I do not think I have read your blog before. I just love what you have written here. The ending is super. So beautifully stated.