Monday, November 21, 2011
Day of thanks #21
Today I am grateful for a little girl named Leah. Leah is one of my good friend's daughter and Leah has Down Syndrome.
I am grateful to her in so many ways, it is impossible to even start. You know when someone or something just touches your heart and your life and you are forever changed for the better because of it?!?! That is Leah. I had never had much interaction with any person with DS before she was born. I remember walking into visit my friend Mary (who delivered prematurely) and meeting Leah for the first time. She was less than 4 pounds of amazing. I heard Mary say the words that she had Down Syndrome - but it never mattered...I knew Leah was going to be great and do great things.
I watched Mary struggle with many of the obstacles that come along with having a child with DS. Milestones that come easily and early for others were a struggle for Leah...drinking from a bottle, walking, going potty on the toilet...all came at different times - but were celebrated with so much more joy than most. Mary and Eric (and big brother Greg) were absolutely put on this Earth to be part of Leah's family! They ALL love her unconditionally and support her 100%. Every year Mary puts together a "Buddy Walk" team to raise money for the DS Association of the Columbus, OH area. And in all the years I have known her - they get in the top ranking teams for number of participants and amount of money raised! She teaches love and giving with every minute of the day to her children!!! I remember her son Greg was saving pennies (for the Buddy Walk that year) and he donated them to Gavin to give to the Red Cross for the people of Japan. It was so touching to see that love and caring in a little boy, especially since I knew how much that money he raised meant to him. We kept the pennies in the bag and gave it to the Red Cross just like that.
Now, anyone that knows Mary knows she does not want to ever hurt someone's feelings. Anyone that knows me, knows I will set you straight on an issue if it hurts your feelings or not. I lay it out there if it is something I am passionate about. One day, Mary casually put a link up on her blog. http://www.r-word.org/ Help eliminate the use of the R-word in everyday speech. SPREAD THE WORD TO END THE WORD! I was very interested in what this meant. Once I clicked on it...it asked me to make a pledge..."I pledge and support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities." What a wonderful concept!!! I talked a bit with Mary about this and found out how hurt and upset she gets when people use the word 'retarded' or 'retard'. It is as derogatory as saying the 'n' word. But, most of us grew up saying things like "That is so retarded" or "Stop being a retard". I never really thought about these phrases until this moment in speaking with her. So from that day forward I made a pledge to ban that word from my vocabulary and to educate others on how it sounds and makes people feel.
In some situations, I just walk away from the conversation. I know not everyone will agree or feel the same about this. But in most cases, if you are my friend, I will tell you straight up that you sound ignorant. Ignorant to the fact that the word is hurtful. Ignorant to the fact that the word is meaningless. And ignorant to the fact that you just sound like a plain old bad person when you say it, Sometimes I am a little rough when I tell people about it - and I apologize. I may have even made people cry about it (sorry :-). But please know, it is only because you are my friend that I say something to you about. Please know it is because I care deeply about this mission to try to end saying that word. And please know I am doing this for Little Leah and her family. Most of my Columbus friends have heard me say this many times..."We DO NOT say that word!"...but I haven't said it as much as I should here in Japan. I did mention it to a college friend on facebook the other day (and he responded with great care and consideration and thanked me for showing him the link). But last night I heard it said a few times, in a room of people I consider friends and I should have said something...done more. So Yokota friends...please know I will probably be saying something to you next time I hear you say the words. So that is why I am thanking Leah now....for making me think about it again and stand up and say something. Teach people it is hurtful.
I am grateful for Leah in giving me passion about this topic (among many other things she has done for me). Here is a little blurb from Mary's blog that I love reading....
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.