Thursday, March 13, 2008

The "R" Word

Yesterday I was caught off guard when a co-worker of mine was discussing her youngest son going to preschool. Her son is a few months younger than Payton and she was telling me how she couldn't stand it because her son can only write part of his name - not all of it. She laughed and said "My first child went to preschool doing things every other preschooler is doing and my youngest is going to look like a retard". It's kinda funny, because she knows Payton has WS....and I can't help but think I would stop and think before saying that to someone whose child actually has a syndrome - and is delayed. (Actually - I wanted to tell her I would be thrilled if Payton could even draw an "a"!). She continued with her story and finished off with "I don't want my son to be a short bus driver...." and after that I trailed off thinking in my own mind how sad society is sometimes being so hard on individuals who can't do things as well as others. You know, I know I won't ever be 'thankful' that my daughter has ws - but I can say I'm thankful she's taught me so much about life. We don't take a single thing for granted anymore - and that's a gift she's given to us.
I told my mom this morning that instead of things getting easier it seems like it's getting tougher. I'm sure anxiety medicine will help us tremendously (by the way I rec'd all the paperwork for the developmental pediatrician yesterday in the mail and it made me even more excited to see him....I truly think he will help Payton and make sure we've also covered all the medical bases). On an almost daily basis now Payton seems to cry for about an hour or so after I pick her up and cries atleast an hour before she actually settles down in bed (then seems to obsess about things she is afraid of - the clock, moon, sheep, etc. for about and hour and a half). Life is exhausting right now and it's hard for me not to get hateful with her geneticist. Although we've decided Payton will not be seeing the geneticist again I would atleast like to send her a video of how my daughter is so out of control - completely unable to control her emotions. It's so sad to watch her go thru it - I just want her to be able to go outside, play, and be a kid. For now, Bob and I's hearts are heavy and ready to see our little girl relaxed and happy.

11 comments:

Jenny B said...

It is amazing how many of my friends use the word 'retarded' in every day conversation. It makes me scream on the inside. I can't believe your friend made those comments! With all the PC stuff in the world now, it's unreal that people still think it's okay to say things like that. Especially because 'retarded' is a real medical term still used to describe a person with a lower IQ. Anyway, I'd be interested to hear what happened with your geneticist. My thoughts are with you during this difficult time with Payton.

Julie said...

I can't believe your co-worker said that and didn't even have the decency to catch herself. I would have felt like she slapped me in the face. I hope the doctor can help Payton. I can't imagine how painful it is for you to see her go through this. You must feel so helpless. xoxoxo

Nancy said...

Some of my friends still use that word accidentally, turn red, and apologize to me now. I just pat them and say, "Hey, it's okay. You were saying?" They are trying so hard to change, and I appreciate the effort so much. They know how much it bothers me because of my blog.

I'm sorry about Payton's anxiety. That sounds miserable. Erik and Payton seem to be wired a lot alike, although we haven't gotten to that point yet. I hope you can get some relief soon.

Thinking lots about you. xoxo

Michelle said...

I HATE it when people use that word. It feels like a punch in the stomache each time I hear it. I usually just bite my tongue and move on but it always rattles around in my brain for a few days afterwards.

I am so sorry you guys are going through so much with Payton...it's so hard as a parent when you just want to fix it and make it better and you can't. Hopefully the Devl. Pedi. will do the trick.

xoxo
michelle

Heather said...

I'm glad the ball is on the roll now for the appt.
Ugh! Some people. It is annoying when people know our situation, but still continue to use the word. Some people don't even try. Oh well. It takes all kinds of people. love, heather

Penny said...

I had a similar situation last week at work. Someone used thatword and I immediately corrected him and told himit was inappropriate and reminded him about Keith. I know I completely embarrassed him, but I bet he won't do it again. Otherwise, he will keep doing it and one day, I might just have to punch him.

I am glad you have a plan for Payton's anxiety. I hope it goes well and you feel good about the Dr.

Every minute counts.... said...

I have heard the same words come out of my in-laws mouths and I think that hurts more than friends doing it. It feels like a punch for sure. I correct some poeple, some I just think, there's no point. Which may be equally as sad.
I have had to just walk away from my in-laws, there is not much I can say, they already don't like me much!
I think it gets harder when the differences start becoming more apparent to the average person. It means you can't hide behind the saftey of "she's still a baby" and write it off as nothing more than that.
I really hope you get the answers you are looking for and the meds help Payton get back to herself. The Payton who loves life and does not worry so much!
Hugs to all of you,
Noel

Nicole said...

I hope you get some answers. I will be praying for Payton and for you guys to get a little relaxation over there.

That word drives my husband and myself crazy. My husband is awesome and calls out everyone on it. Interestingly, he has had to say something the most frequently to co-workers. He is in a business setting and is constantly shocked how often it is used. I am a bit more chicken. Sometimes I say something, sometimes I don't. I always say something to friends and family because I don't want to have to worry about it being used.

Sorry for the bit of a ramble, I guess you struck a chord with me.

Amy said...

Well taking your anger out on a geneticist you won't be seeing again is prob more healthy than taking it out on your husband or kids(: So don't apologize for being angry, you have the right to be! it is funny how parents of typical kids take EVERYTHING for granted (from health to intelligence), and then they wonder why they are so disappointed later in life when things don't turn out the way they "planned" it for their kids. I think most of us just try to "plan" to be happy as much as we can and "plan" to take care of our kids the best that we can, for who they are.. Man, I HATE the short bus comments. WIshing you some peace and quiet this weekend, stay home, don't go anywhere!!!!
xoxo
Amy

Edna said...

Hi Tara,

I'm so sorry to hear about the comment your co-worker made. People are so insensitive. My husband gets so mad...but both of us are still so new to this that we haven't really started correcting people. We just talk about it with each other and think about the times when we may have been as insensitive. Then we both feel terrible.

I honestly feel that most people aren't trying to be malicious, but it doesn't make it hurt any less. We became more sensitive to the word before Carriella was diagnosed. I think we both knew that she wasn't going to be a "typical" child.

I was just talking with my manager (whose wife has breast cancer) the other day about living with blinders on. We all do it. We live our lives based on the experiences we have. Then something happens and the blinders are lifted, and our view is forever changed. Some people leave the blinders down no matter what they encounter or experience, and I feel sorry for them. Others--like us--try to enjoy the new view and enlighten others with our experiences. Some will empathize and their blinders will open; others just sympathize for the moment and go on living with those blinders. (Nicole, now I've rambled, too!! :-)) I'll apologize, too, but you've definitely struck a chord.

You're in my thoughts and prayers. I hope you find a way to help sweet Payton with her anxieties.

Ava Jewel Leilani said...

Tara
It saddens me to hear about the rough time beautiful Payton is having, she is such a sweet little girl. I am all so sorry for I know what it is to have a heavy heart, I hope you find some answere's soon and some peace comes into your home.

Keep you all in my thoughts and prayers,
Anna