Erik Quinn: The Heart of a Family: The "R" Word

Friday, September 15, 2006

The "R" Word



I am having yet another bout of insomnia. Gracie woke me up again with her bloody meowing, and I tried for over 30 minutes to return to sleep, knowing it was hopeless but trying to think positive. Once I got the cat calmed down and sleeping next to me, I gave up.

Yesterday was a chilly day. The snow level was supposed to drop to 4500 feet last night, and I wonder if there will be snow on the mountains when the sun rises. Yesterday afternoon when I drove by the park, the sky was sagging with strange, electric-appearing, blue-gray clouds. This beautiful color reminded me of the tip of a Crayola crayon in the deluxe box (the one with the sharpener) from long ago. The park was a brilliant, emerald green in contrast to the sky with a wide swath of lazy silver river meandering through it. I felt sad because I know that things don't get any greener around here, and the summer has reached its apex before the descent into freezing nights that turn everything sickly yellow again. When we got home, the deer-ravaged day lily in the yard that was a recent gift had a brand new trumpet-shaped bloom on it, its hue a cross between tangerines and shrimp, virtually glowing under the icy sky. It was beyond beautiful.

I watched the Ellen show yesterday, and there was a young man being interviewed who had been blind since birth. He had perfected his own system of using clicking sounds in order to determine where objects were when he was out walking on his own. When Ellen asked his mother how she raised such a delightful, positive boy, she explained she told him he could do anything he wanted to and never treated him any differently. When he would stand at the window at home, she would ask him what he saw outside. She never, ever used the word "blind." This seemed ridiculous to me, because he couldn't see his hand in front of his face, yet at the same time I completely understood where she was coming from. I talked yesterday with my new friend who just received the diagnosis of Phelan-McDermid syndrome in her daughter, and we talked about the "R" word. I feel torn about using such a word to explain Erik's condition. Not using it doesn't make the problem go away, yet using it is painful and induces guilt because it seems to put a limit on our children. Maybe we associate that particular word with hurtful things that were said in school or feel guilty for using the word casually ourselves. I hear it said by others as slang in conversation and on television and radio in a pop culture context constantly. I'm honestly not sure how I feel about that. I have used this word in the last six months maybe twice, but I found a perfect spot for it in the front of a creaky file cabinet drawer in a cobweb-strung corner of my brain. Is this a sign I'm in denial? No. I have tackled what WS means head-on, for the most part, in the past six months. Because I listen to medical jargon for much of my day, I occasionally get that word out to help other people understand what WS might mean to our family in a clinical sense without much trouble. After that, though, it goes back in the cabinet. It was hard to say at first. It helps that it was one of the very first words the geneticist matter-of-factly and brutally blurted out when he presented us with Erik's diagnosis. The more I think about that day, the angrier I feel. As I remember it, he explained WS as pretty much purely mental retardation and simply gave us a scale of where Erik would be in comparison to typical kids and kids with Down syndrome. Perhaps there was more said about other aspects of WS, but I didn't hear anything but that ugly word. In any case, it's all I remember him saying to us that day, and the whole assessment seemed to take less than a few minutes to complete before we were sent on our way to deal with the nuclear warhead he just dropped on our lives and he went off to have a sandwich and see his next patients. The word seemed obscene that day but now seems like just a medical word to me anymore. Out of respect, I no longer use it in casual conversation as slang or in a medical sense around other moms in my situation unless they say it first. I also realize that when it is used as slang, it is not used to cause me pain. I see my friends flinch after they accidentally use the word around me, and it makes me uncomfortable when they apologize for it.

As Erik ages, the "R" word will probably come out less and less often as the people around me know what WS means and it is not often necessary to explain things. Unlike the geneticist, it is far from the only word I use to describe WS. Erik, of course, will never hear me say it. It's funny how I can equate it with his condition but don't really apply it to Erik himself. Maybe that's why I don't have too much trouble with it. One thing that really struck me about this mother on television was the fact she said that when she needed to cry, she went into her bedroom and closed her door so her son wouldn't witness it. I'm not certain I ever want Erik to see my writings here for the same reason. I will probably pull the plug on this blog eventually and file a hard copy away somewhere secure. I wouldn't want him to misinterpret my words and think he wasn't wanted or that he himself has caused me any pain. Neither of those things is true. I am just sorting things out as I go and hopefully can help somebody else in the process. Frankly, after seeing that show yesterday, it was nice to know that other mothers cry sometimes just like me about the tragedy of their child's condition and at the same time love them more than life herself.

I was invited to my cousin's son's 1st birthday party this weekend. I have decided not to attend. I have not met this child yet, but I can't bring myself to introduce yet another baby into my life right now. I feel horribly guilty about it. However, the thought of forcing myself to go practically gives me hives. I actually woke up thinking about it the other day. It is torture for me to see what could have been for us in the form of a lively, babbling, coordinated baby. Harsh, I know, but that's a fact right now. That is what bothers me the most about this whole thing and actually sparks a little anger in me. Erik is and has been different from day one, and I am contentedly oblivious to that fact until I see someone else's child and my wounds are ripped open yet again for no good reason. I just hate what my brain and heart do when I see other kids. There has been no greater pain for me in my lifetime, and I wonder if that pain will ever subside. One day at a time. One baby at a time.

I hope today is a little better for me emotionally. As I noted how beautiful the park was yesterday, I was simultaneously fantasizing about systemically swerving to strike cone-licking pedestrians, one after the other.

My friend Shaena sent this to me, and it seems like a good thing to do as I wait for the sun to come up. Fill it out and e-mail it back to me if you have insomnia, too.

(ALL YOU NEVER WANTED TO KNOW ABOUT NANCY)

1. MIDDLE NAME? Ask me in person.

2. WERE YOU NAMED AFTER ANYONE? I believe my mother named me after a television show she saw at the hospital. (See: http://www.imdb.com/title/tt0065325/)

3. WHEN DID YOU LAST CRY? Yesterday. I don't cry every day anymore. Yay for me.

4. DO YOU LIKE YOUR HANDWRITING? Thanks to my job filling out photo orders at the drugstore years ago, I can only print in capital, block letters now kind of like a serial killer.

5. WHAT IS YOUR FAVORITE LUNCH MEAT? Turkey (so sleepy...).

6. KIDS? My hilarious, wonderful son.

7. IF YOU WERE ANOTHER PERSON WOULD YOU BE FRIENDS WITH YOU? Sure.

8. DO YOU HAVE A JOURNAL? For all to see. It would probably be easier to get a web cam and take off all of my clothes, but I should have started that 20 years ago.

9. DO YOU USE SARCASM A LOT? Of course not.

10. DO YOU STILL HAVE YOUR TONSILS? Yes.

11. WOULD YOU BUNGEE JUMP? Sure. You go first.

12. WHAT IS YOUR FAVORITE CEREAL? Frosted shredded wheat. It's the perfect kids' cereal for old people.

13. DO YOU UNTIE YOUR SHOES WHEN YOU TAKE THEM OFF? Depends on how quickly I am trying to do it or how tired I am.

14. DO YOU THINK YOU ARE STRONG? I can lift heavy things on command, if that's what you mean.

15. WHAT IS YOUR FAVORITE ICE CREAM FLAVOR? Brown Cow by Lucerne in the 1970s (root beer and vanilla). I miss it.

16. SHOE SIZE? 9.5-10 left and 9 right since I carried a human being in me for over 9 months. The rest of the swelling subsided.

17. RED OR PINK? Pink.

18. WHAT IS THE LEAST FAVORITE THING YOU LIKE ABOUT YOURSELF? I care about what people think too much and would like more confidence. Having a child is changing that daily, though.

19. WHO DO YOU MISS THE MOST? My grandfather. I wish he could have met my son.

20. DO YOU WANT EVERYONE TO SEND THIS BACK TO YOU? Sure, but hopefully they are asleep at the moment.

21. WHAT COLOR PANTS AND SHOES ARE YOU WEARING? Too early for normal clothing. Purple fuzzy socks, pink nightie, fuzzy blue bathrobe, and bed head.

22. LAST THING YOU ATE? Chocolate chip Slim Fast meal bar (16 pounds and counting).

23. ARE YOU LISTENING TO ANYTHING RIGHT NOW? Hum of my computer.

24. IF YOU WERE A CRAYON, WHAT COLOR WOULD YOU BE? Periwinkle.

25. FAVORITE SMELL? Wet sagebrush, Yankee Home Sweet Home candles, and various cleaning products (sometimes at the same time -- love to clean on rainy days).

26. WHO WAS THE LAST PERSON YOU TALKED TO ON THE PHONE? Andy (I'm sorry I started laughing when you told me about your bad day).

27. THE FIRST THING YOU NOTICE ABOUT PEOPLE YOU ARE ATTRACTED TO? Smile.

28. DO YOU LIKE THE PERSON WHO SENT THIS TO YOU? Immensely.

29. FAVORITE DRINK? Margarita on the rocks with salt or A&W root beer.

30. FAVORITE SPORT? I love watching football.

31. EYE COLOR? Gray.

32. HAT SIZE? I have never been a hat wearer, but I imagine my head is as Amazonian as the rest of me.

33. DO YOU WEAR CONTACTS? Yes.

34. FAVORITE FOOD? Maui zaui pizza with Polynesian sauce from Round Table, shellfish, griddled items, white chocolate...I could go on forever, but I'm tired.

35. SCARY MOVIES OR HAPPY ENDING? I like both, but it depends on my mood. These days I only allow myself to watch Chris Farley movies in a continuous loop. I am tired of being sad.

36. LAST MOVIE YOU WATCHED AT THE MOVIES? Uh...I honestly don't remember. It has been probably over a year.

37. WHAT COLOR SHIRT ARE YOU WEARING? I think we established that earlier.

38. FAVORITE SEASON: SUMMER OR WINTER? Winter...although now that Erik is in my life, I enjoy being outside during the summer with him. It's like discovering things all over again.

39. HUGS OR KISSES? Depends on who's offering.

40. FAVORITE DESSERT? Oh here we go again. Rhubarb custard pie (mom's), ice cream, cold vanilla pudding, flan, root beer floats...OHHHHH carpal tunnel! Stop with the food questions!

41. WHO IS LEAST LIKELY TO RESPOND? Not sure.

42. MOST LIKELY TO RESPOND? Not sure.

43. WHAT BOOKS ARE YOU READING? The Ted Bundy interviews, which I received for my birthday. I have a gripping book on cadavers next in the queue.

44. WHAT'S ON YOUR MOUSE PAD? It's Brian's old desk and mouse pad, so some company name I am unfamiliar with. Probably a very manly company selling wire, pipe, steel, or dirty magazines.

45. WHAT DID YOU WATCH ON TV LAST NIGHT? My Name is Earl.

47. ROLLING STONE OR BEATLES? Both. I prefer Van Halen, though. Don't ask me to choose between David Lee Roth and Sammy.

48. THE FURTHEST YOU'VE BEEN FROM HOME? Paris, France.

49. WHAT'S YOUR SPECIAL TALENT? Making my friends squirt the beverages they are drinking out their noses by telling jokes.

50. WHEN AND WHERE WERE YOU BORN? I'm so old, I don't remember.

51. WHO SENT THIS TO YOU? Shaena.

Life is not measured by the number of breaths we
take, but by the moments that take our breath away.

5 Comments:

Blogger Aspen said...

I laughed, I cried...you moved me. You always move me! Now get back to bed!

Love you girl!

7:59 AM  
Anonymous Susan Rohde said...

You've captured my exact feelings on the "R" word. I will not use it and neither will my husband.
Also I have found crying in the shower is good. That way you have the sound of water to muffle your sobs and you can clean up afterwards...no messy mascara rings:)
Have a great day. I loved learning a little more about you!
susan
mom to Jaxson-3 (Williams Syndrome)

8:31 AM  
Blogger Kerry said...

We never talk about the "R" word, but neither did my doctors either. I also don't really equate it with Brady. I am a little more sensitive about it though, as I do her it in slang and now I make sure we don't talk like that in our house.

I'm emailing you! :)

Love -K

8:23 PM  
Blogger Kati said...

Uhh, the "R"-world... I try not to think to it. Sometimes I have the feeling to get in closer touch for "R"-children's mums, but I really don't know it would be useful for me, so I try to stay in touch with them only at the therapies. A few months ago I really tried to make friendships with them but I saw that they are remote, so I stopped the strain... I think I don't want to be with someone who has a more "R" children than Szabi (because our main theme would be the "R" world...), but if she would have a children who is more skilful than Szabi, I'd envy her...so why shouldn't I stay in the normal world with the normal kids? I try to socialize Szabi at the playground, although he is very shy and mainly plays with himself, I beleive in this is good for him...
And Nancy, yes, I hate what my brain and heart do when I see other kids, too....I force myself not to cry when I saw them...
I am very sensitive to the slang in connection with "R", but I try to intercept it with humour, a few days ago I said to Szabi: 'are you stupid, my son???'

Love, love, Kati

5:41 AM  
Blogger Lisa R said...

No "R" words in our house....I always try to think about Chris' step sister she was born Deaf and speaks 5 different languages now none of which are sign langue pretty cool eh... So Glad that you don't think that you are sacastic HAHA... YOur the Best Nance :) Love You

10:10 AM  

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