Friday, September 16, 2011

The things people say

To the lady at Disneyland who put me in tears: My daughter is not a freak.

To the window washer guy who came to our door: She doesn't just "seem" to have pretty eyes.  Maaike has beautiful eyes and that isn't the only thing she's got going for her.

To the mother at Coy's swim lessons: Don't punish your child for being brave enough to ask me about Maaike instead of just staring.  When you punish him you teach him not to reach out, not to connect, and that there is something shameful and wrong with being different.  Being different is beautiful.

To the other kindergarten mother:  Having a healthy baby isn't the only thing that matters.  What matters is that no matter how they come they are ours to love, care for, and cherish.

To say that we were not prepared for people's reactions to Maaike is a gross understatement.  I could not have fathomed the things that a few people have said.   On the drive home from our Disneyland trip we were at our tipping point.  The pointing, the staring, the waving their friends over to gawk, had brought us to our edge so when we stopped into a restaurant to grab a bite to eat and  over heard a woman say to a man, "OMG. Did you see that baby," we were ready to snipe back, "Maaike do you see that crazy lady with red glasses and ugly hair."  Definitely not our best moment, but a needed release and catalyst for our new stratagem.

Years ago I was moved by the story of a neighbor of ours who had two special needs children.  Their oldest daughter was born with Trisomy 18 and miraculously lived til she was almost 16 years old.  Their 4th daughter was then born with down syndrome.  On one occasion she was out with both mentioned daughters as well as their other 3 daughters when someone pulled up behind her vehicle and yelled at her for parking in the handicap parking when she was obvious perfectly ambulatory.  I think she had every right to lose her cool, but instead she walked over and lead the passenger out of their car and over to her van's side door to introduce her daughters.  They apologized.

Learning a lesson in grace from our neighbor's reaction, our new approach is to step forward and introduce our dear Miss Maaike, because the moment you meet her you can't help but fall in love.  I am still in process of summoning the courage and holding back the tears, but it feels right and absolutely imperative for Maaike to know there is no need to shy away from outside world or fear what ignorant people might say.  Being different is beautiful.
  

11 comments:

  1. I am a new trach mom to a precious 9 week old baby boy. He also has several other medical problems and has dysmorphic features. Reading your post almost made me cry because I can relate so well with what you are feeling. For a while I would not let people come visit b/c I didn't want people to see him, to think he looked strange. I have now gotten up the courage to share photos with people. All this is say thank you for sharing your life.

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  2. I can relate. Most people have been wonderful, but there are a few who just leave you shaking your head. The comment I often get with Lamp is "oh she has a beautiful face" always a mention of the face...like people can't just say SHE'S beautiful they have to make sure that OF COURSE I know they're referring to the one part of her body that is not atypical.

    And I would LOVE to spotlight you guys! LOVE it. My email is thislittlemiggy at gmail dot com... If you could just send me your email and I'll get the ball rolling.

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  3. Excuse me while I march myself to Disney and have a serious conversation with the woman who called your sweet girl a freak!

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  4. It is so nice to meet you. I totally understand those comments, too. I love your Puj video - so beautifully done.

    Love, Bree

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  5. Yes, the lady...actually ladies at Disney were uncalled for. 2 friends who came over to gawk, but in the wise words of my husband, "You need not waste you time fretting over people like that. Good things don't come for them." So true.

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  6. Oh Rian, I'm so sorry. You display such grace and wisdom to people who don't deserve it.

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  7. Just checking in with you Rian. You continue to amaze me with your courage. That's right, Girl. You fight for that Maiike! She has certainly come to this world ready to fight. I loved her spunk and her cute personality when we saw you this summer. What a cutie!

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  8. Rian, I started following you on your presserfoot.com blog and now check in on you here! I love your candid accounts of the life of your beautiful family. I am in school to be a respiratory therapist right now and can't wait to be part of the lives of families as sweet as yours! Maiike is absolutely beautiful; ALL of her! My prayers are with you as she gets ready to undergo surgery and as she continues to grow into a lovely little lady. Blessings! Ms. Z

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  9. You and Sid have SUCH patience. If you ever want a bouncer just give me a call. I have a few choice things to say to those rude strangers! I know practicing love in the face of all of that ignorance is the way to go....but, I'm just saying....I can throw some 'bows.

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  10. What an incredibly beautiful family! I wish I could take the stares for my baby-- I wish we had some kind of body armor to protect us all. Maiike is so beautiful and so precious. What an incredibly strong and amazing little girl. To make fun, point or stare at a child or any person is so rude. I pray for the day that differences are celebrated. Your blog is beautiful and I am so glad to have found it. I hope it is okay if I link to it regarding the story about the woman in the airplane. Hugs- Jen http://jendawnscowgirlup.blogspot.com

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  11. I totally understand your frustration and your thoughts...I too have a daughter who is simply special...she is severly disabled and people gawk all the time...I've learned to ignore and just say Thank you I know she's beautiful..and they either look away or say yes she is..
    Your daughter is beautiful! you have a wonderful family congrats..I pray things get easier!

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