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Sunday, June 29, 2008

I go where true love goes, I go where true love goes..

Those words are from Yusef Islam (a.k.a. Cat Stevens) and they helped me to frame an experience I had today that has taken me from love to surprise to annoyance and anger all the way back to love.

Dave and Ellie and I went to a very special occasion of some good friends of ours today. We went there because we love these people and wanted to celebrate with them the joy they were holding up in gratitude. It was lovely to witness their happiness.

As we were sitting there after the event and everyone was eating. Ellie was sitting on Dave's lap and we were reading to her and contemplating hitting the food table when my friend came up to get a picture of Ellie. As my friend was trying to get Ellie to look up and smile a woman came and sat down very close next to Dave and snapped her fingers in front of Ellie's face and even stroked Ellie's cheek and spoke to her loudly and harshly telling her to look at the camera. Dave instinctively turned his body and Ellie away from her. That was when I was surprised because when weird things like this happen I am sometimes slow to process.

My friend took the picture and moved on at which point this woman started talking. She asked, "What's wrong with her?" Pointing at Ellie. At this point I was reminded of children who very openly ask about Ellie in their innocent accepting way. I was happy to be there for my friend and my heart was open so I decided to give this woman the benefit of the doubt. So I told her that nothing was wrong with Ellie but she did have Cerebral Palsy. She asked what exactly that meant. So I explained that CP is somewhat of a garbage bad diagnosis and manifests differently in people that have it. She persisted and her voice was getting louder. She said she was a psychiatric nurse but she didn't remember her medical training around CP. At this point I had Ellie come and sit on my lap from Dave's and a bit farther away from this insistent person. I started to read to Ellie and talk to her to basically distract her so she wouldn't pay attention to anything this woman was saying. Ellie understands allot for her age even as compared to a typical 5 and a half year old. She was open mouth gaping at this woman as if to say what is up with you? Do I know you? Why are you talking so loudly? This is when I got annoyed.

This woman is what I would call a low self monitor. Someone who doesn't take cues from her social situations very well. She was insistent upon delving into our personal lives. She asked us if Ellie was happy. We said yes. She was so puzzled by this. Then she actually said, "But are you happy, really, how can you be?" Dave and I said together, "Yes we are happy, we love Ellie!".

To which the woman replied, "I often wonder how parents of handicapped children can be happy. I myself could not have kids but we adopted one from Guatemala and one from Costa Rica. It's awful about the down syndrome kids isn't it?" The whole time Dave is saying less and less. Then she launches into a rant about how people abort down syndrome babies and how wrong that is and how all the research she has read show that women regret it and on and on. This is when I felt anger. Anger that she was saying that in front of Ellie. Anger that she was talking about this to us at all. Anger at all the crap she was implying. Anger that she was hard lining it about woman's reproductive rights and thinking that she could possibly understand how all women would feel regarding abortion. Angry that she was letting Ellie in on the fact that some people. and I hazard to say a majority, don't feel like a disabled life is worth living.

What do you do in this situation? Do I tell her off? No. Do I get up and walk away and make a scene and ruin my friends special day? No way! So instead I nudge Dave and ask him to get us a sandwich. The talk of food was enough to distract her and she went to get some herself. I was relieved that she had gone though I still felt very bad at this whole thing. The joy I had felt earlier for my friend had seeped away and I just wanted to get out of Dodge. And then I felt bad that I let someone's ignorance and bad social skills influence my state of consciousness in a such a negative way on my friend's special day.

It has been this combination of emotions that I have been battling with for the rest of the day. It's really not worth it right? And I have to say these feelings flared slightly around lunch time but then I decided to let them go. Because I love Dave and Ellie and we are happy and other than that brief encounter were having a really nice day. That said, the whole experience was sitting uneasily in my chest like a restless thing that was padding blunt feet one level above my awareness with the consistency of some far away jack hammer.

It was not a day I wanted such distractions. Later in the afternoon when Ellie was getting her avocado she was watching the Signing Time, "Time to eat" video. She had her little Weemote and put on one of the songs she doesn't usually put on. It was one describing breakfast lunch and dinner. She did this and when I came over with her food and she put her hand on my arm and looked at me and then to the video. And I knew what she was asking. And I said, you are having a SNACK! That is between lunch and dinner. Snack! And she was delighted.

A few moments later when I came back from getting her some more food at the counter she had switched to the part about setting the table and as I came closer I saw her practicing the sign for cup. She would bring her hands together as Rachel on the video would demonstrate the sign for cup. Ellie would do her cup then she would switch the video back to cup and try again. She did this four times. Cup, practice, cup, practice, cup, practice. There she was practicing not caring if anyone was looking. Just totally absorbed in learning something she wanted to learn.

Looking back on that I feel lucky. Lucky enough to get to see Dave and Ellie, these two extraordinary people, in private moments you are only a part of in a family. Like Ellie practicing how to sign cup when she thought no one was watching .

Ellie went to bed around 9:30 tonight after falling asleep on my lap. At this point I started searching You Tube for something to watch. I found JK Rowling's commencement speech to Harvard which was good. But that wasn't what I was looking for. There was some bit of wisdom out there that would settle this restlessness or at least comfort me. So I typed in Cat Stevens as I have been a long time fan. That is when I came across the song titled "Heaven/where true love goes". I realize that Yusef was singing about god but this song made me think of Ellie.

"Follow true love, follow true love." I do and that is the simple explanation that we gave this morning. We love her and that is enough, that is allot. I don't need a reason for that or to justify it to onlookers. I don't need pity because I have so much love. And just like that, upon hearing that song, I felt my heart open and my mind was put at ease.


Anonymous said...

That woman is really insensitive and a total (rhymes with witch). You and Ellie and Dave all rock. And I totally get what you mean about that sort of experience casting a pall over an otherwise joyful experience and sitting badly in your chest. Been there, done that. Too many damn times to count. (((hugs)))

Penny L. Richards said...

Oh YIKES. I can just see it--we've been pressed into such situations too. I just scramble to extricate us somehow, quickly. It's not pretty.


Anonymous said...

"This woman is what I would call a low self monitor."

You are really polite. Which is probably related to your return to a good-feeling-place at the end of the day.

My post yesterday includes some of what you talked about. Barbara

Anonymous said...

Thats one amazing daughter you have there. Sorry about the experience. The woman doesn't sound very nice at all.

Unknown said...

Oh, God. So scary when this happens and people tell you their job is something like a psychiatric nurse. Doesn't remember her CP training? I guess, but that is pretty basic stuff, isn't it. (Not that CP is basic, just having some knowledge of what it is.) Anyway, yeah. What a b^%#$.

Good for you for finding a way to comfort your mind and heart about it, though. You are right, it is all about true love. You are almost certainly much happier in your lives than that woman knows is possible for even understanding that.

Katy said...

Gosh. You probably should have told her that CP was contagious unless you'd have the vaccine, so she better get away quick! Ok, I'm kidding. It does suck when people cast a pall over your whole day like that, but you are so right. One of the worst things about raising a child with a disability isn't having a child with a disability. It's dealing with other people's pity. Seriously, Charlie makes all the hard work worth it, but strangers? Ugh.

MonkeyDogStudio said...

Hi. I stumbled into your blog while looking for an image related to caffeine (go figure, huh?). Anyway, after seeing your post about the super-obnoxious snapping woman I wanted to leave a comment for you. Ellie is beautiful. Thank you for sharing her story. And I'm sorry that there are such obnoxious, thoughtless people in the world as the one you encountered. May you encounter many more GOOD, THOUGHTFUL and KIND people instead. Peace. -Janet

Jodi said...

What a beautiful song...I hadn't heard it before. I am also a Cat Stevens fan.
I have also been in the situation where people have said some insenstive things right in front of K. So maddening! Like you, I try to make it obvious that I want to discontinue the conversation. It is amazing how many people do not pick up on it.

Danielle said...

Ugh, I know this feeling exactly. It has happened to me often, and I try not to let people like that ruin our otherwise wonderful day. But it makes me so upset and angry and sad thinking that this is the world my son is growing up in, these are the kinds of people he will have to face. People like that, you can't explain anything to them, so I think you handled it well. She'll never understand unless it happens to her.

I wanted to let you know that I recently put a link to your blog on my River of Jordan blog, under "Mommy Disability Bloggers." I think we are a real growing community and need to stick together! If you can think of a better term for us than Mommy Disability Bloggers," let me know! Hope it was ok to link to you. Keep up the great blogging. Your posts are so thought provoking.


23wktwinsmommy said...

Beautifully written, as always. I am so sorry you had to deal with that woman. I have come to realize I really don't understand some people, and I don't think I ever will. The lives of our children are amazing and it is more than unfortunate that some can't see that upon first glance.
I admire your strength and ability to cope with this incident.

EMBelieve said...

Hello my name is Gina and I have followed your Blog for a while now. I have a son with CP and my husband and I LOVE our child and we are VERY HAPPY too!

How insensitive that woman to question the love for your child? I also find dealing with people's pity so annoying. I admire the way Dave, Ellie and you handled the situation.

I know that love... is big and powerful, puts a smile on my face and my mind at ease. I suppose is the love any parent has for their child whether he/sde is disabled or not...isn't it?