Monday, September 9, 2013

Open letter

Open letter to all parents:

Dear Moms and Dads,

I want to talk about something uncomfortable.  It has come to my attention that many of the best among you are making a big mistake.  I understand.  I was too, two years ago.

My daughter has a rare genetic syndrome, called Apert syndrome.  When she was a baby, the plates in her skull fused together.  That meant that there was no room for her brain to grow, and she needed surgery right away to relieve pressure.  Her head is larger than average.  When she was born, her fingers and toes were fused together.  She has had the first surgery to separate her fingers, so now her thumb and pinkie are released.  She has a tracheotomy, so she cannot talk yet.  Because of various complications, she has spent a significant portion of her young life in the hospital.  She is developing muscles that she needs to sit up on her own and to walk.  She will do these things, but for now she is in an adaptive chair.  My beautiful girl stands out.

 I already have to teach my girls that some people are just mean and you cannot let it bother you.  I already have to teach my girls that loving people who are mean is part of what it means to be Christian.  I am trying to teach them that most people are good, and that is where you come in.

When I take my little girl out, we see all kinds of reactions, but the most natural, the most genuine, the most common, is the reaction we see from most kids.  They look.  Some are puzzled.  Some worried.  The most adventurous of them ask questions.  Almost all are curious.

Staring is rude.  Pointing is rude.  You know this.  You are embarrassed by your child because they are pointing or staring.  You shush your child and pull them away quickly, and I know you are doing it to save my feelings, but my feelings are not so fragile and your action is doing real damage.  You are teaching your child to be afraid of what they do not understand.  I bet that most of you have a short conversation about diversity and not staring later; you are good parents after all.  I would like to challenge you to have the conversation right there.  Put a smile on.  Say hello.  Introduce yourself and your child.  I will introduce myself and my children.  Your child will ask questions.  Likely the same questions you would want to ask, but you feel rude highlighting the differences, even when they are obvious.

Here is the thing: kids categorize.  They need your help, and maybe mine, to make sure Sarah gets into the right category.  They ask questions to figure out how things fit in their world.  When you don't let them ask their "rude" questions, you confirm my daughter as "other."  Believe it or not, every kid I have met who was allowed to ask as many "rude" questions as they liked, learned in just minutes to see my daughter as I see her.  She is just a kid.

She loves lollipops.  She laughs at her granddad.  She has favorite music.  She is going to school this year.  Her favorite color changes all the time.  Today it was green.  She has a younger sister and an older sister.  Her favorite TV show is Veggie Tales.  She is Daddy's punkin and Mommy's sweet pea.  She will absolutely charm you with her wide, blue eyes.

Imagine what my daughter sees.  A sweet little face unable to look away from her.  Pointing.  Then an adult pulls the child away, consciously avoiding looking at her.  Now imagine that this happens over and over again.  She is a bright little girl, and this is very hurtful.

At the very least you can model the behavior you wish your child had shown.  Make eye contact with her and smile.  Anything less and it won't matter what you say about diversity later.  Your kid and my kid both got the same message from your embarrassment: She is "other."  She is something, not someone.  The initial fear was confirmed.  I will take rude questions over that hurt any day.

I am not accusing.  I know it is hard.

There are nasty bullies in the world.  We will get over that.  We will get over the stares and the pointing from people who should know better.  We will get over the nasty comments.  We will get over the name calling.  We will get over it all because, as I told my older daughter, no matter how many people cannot see past her differences Sarah is surrounded by people who love her.  People who see her.  And she is amazing.

Kids are not mini adults.  They are astounding little people.  They are curious and open and full of wonder.  You can teach them to see a child like them when the see my precious girl who looks different and rides in a wheelchair.  You can teach them to see her as a potential friend.  Or, you can teach them to be afraid.  It is your choice.  I won't judge.  Like I said, I was you and I did not know how to act either.  You don't have to be one of the people who love her- though honestly, you absolutely will if you give yourself half a chance- but please, be one of the people who see her.  Teach your kids to see her.  Please.

27 comments:

  1. Replies
    1. I am from Bangladeh, father of apert affected child, named MUKTO.I throughly read your letter. I am not only sympathized but also empathized to you.ther is no difference between your and me experience.I have to face thousand of queries like you. Former boss of my office asked me that IT IS THE OUTCOME OF MY SIN. believe me i donot know how i could control myself for this kind of reply. You know Bangladeh is the one of the poorest country of the world. treatment facilities is not available like your coumtry. Do NOT WORRY. ONE DAY ALL WILL BE NORMAL. WISH YOYR PEACEFUL LIFE.

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    2. Thank you, Shahinoor, for your kind words. I'll say a prayer for you and Mukto.

      "For by grace you have been saved through faith, and this is not from you; it is the gift of God;it is not from works, so no one may boast. FOR WE ARE HIS HANDIWORK, created in Christ Jesus for the good works that God has prepared in advance, that we should live in them." Ephesians 2:8-10

      He made Mukto perfectly.

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    3. I saw the pictures on facebook of your beautiful daughters. You've got two little heartbreakers right there! I would let my kids come and ask the rude questions because I teach them to accept everyone as they are for who they are. I always have. My kids grew up with a handicapped friend so for them it's a norm, and at that point Justin was Justin and he was fun and awesome to hang out with! just a kid like they were. My love and hugs go to you all and have fun with those gorgeous lil girls!

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  2. Yes, there are people who are just rude and they will never change. However what we have here is what is called the `double handicap`. Whereas your daughter does not understand the `normal` person, they have the difficulty of `understanding` her. What do I say? What do I do? It is easier to avoid all contact. There is then the other problem of partronising your girl. "The poor little thing, how wonderful you are to keep looking after her. This can be more deadly than evasion. I will keep your daughter in my rosary. She is young and we do not know yet what she will achieve by adulthood. As parents just keeping hoping and praying.

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    1. Thanks for your prayers! Our experience has been that most people are kind, but unsure how to act. There are bullies. Most people just need a little encouragement to say hello- and sometimes a smile is enough.

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  3. Your words are wonderful and heartfelt. I will pray for more sensitivity amongst adults and kids. Teaching does begin at home, and everyday God provides us with teachable moments. Let us all turn on the kindness in our hearts and display how we should want to be treated if the shoe was on the other foot. Carry on Beth.

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    1. With kids, everything you do is teaching. They are always watching and what you do is always going to mean more than what you say- so we have to be sure that our words and actions line up!

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  4. You said it perfectly! I hope you dont mind that I shared this on my wall. Praying that this post will inspire more people to look beyond physical appearances

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    1. Thank you for sharing! And thanks for prayers!

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  5. Hi Beth,

    Your Dad is my old, old friend. I live in India now and I have a daughter named Moy Moy who also has profound disabilities. She is 23 now, and the inspiration for a whole foundation for kids like her here (www.latikaroy.org). She's a mini-empire all on her own.

    The dilemma you are writing about is an endless one. Sometimes I want people to reach out to us; sometimes I just want them all to leave us alone and let us get on with our day. It's a tough balance, and it's hard for others to get it right!

    I kind of doubt the day will ever come when people can just smile and nod and walk on by when they see us as they might with any other Mom and kid out for a stroll - but at least in our own neighborhoods we should be able to expect it.

    All the best as you set out on this journey with Sarah and the rest of your family.

    Love from India,

    Jo Chopra McGowan

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    1. Thank you! I will check out your website & say a prayer for Moy Moy!

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  6. PS: I shared this post on my facebook wall - lots of appreciation from all over India!

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  7. Beautiful thoughts, Beth! And so very true. The best lesson we can teach our kids isn't not to be "rude," but to love.

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  8. Thank you. Am posting on my blog.

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  9. This is profound and helpful and beautiful. Thank you so much and my prayers will go out for you and your beautiful family. God Bless...

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  10. Hi Beth,
    I too was amongst the people who would shy away from asking questions and without looking rude just pass by..I am married but not yet a mother. But after reading your letter, I have promised myself that I would teach my kid to look at all beings with respect and equality.. I will pray for your daughter and all the best from all of us here in India.

    Wish Sarah all the love..

    Upasana P.

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  11. A couple of years ago we met this wonderful little boy. He was in a large electric wheelchair and had some sort of ventilator equipment. My daughter was looking at him so I told her to say hi to him. This boy was about 7 and he must have been through a lot of pointing and whispering in his life, but he was so confident and outgoing. He told us all about his chair and showed us the touchscreen that he used to operate it, and he told us about his other equipment. I was so impressed with the way he handled himself, I don't think you even see many adults so positive and confident. I was so happy that we met him and I thought it was such a good experience for my daughter and all of us.

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  12. Hey,

    thank you so much for this beautiful post! I read it aloud to my partner and we found it so beautifully written and true - we thought that it is definitely something all of us should read and learn from. We have a daughter, who has been diagnosed with cerebral palsy, profound deafness and cerebral visual impairment, and she will be bound to a wheelchair for all her life. Even though she's still tinky tiny, her challenges makes her to stand out from a crowd - so unfortunately all those reactions you described so thoughtfully are already familiar to us too. And everything you said in here is something I would have always loved to scream to everyone. To make them see my girl as she is, a precious little human being, not as an "other".

    So thank you for putting my thoughts down into this beautiful open letter. Thank you.

    I hope you do not mind; I found your post so moving that I'm thinking of translating it to my native language Finnish, which I use in my blog! I will give all the credit to you and link back to your post. My blog can be found from here: http://www.meriannen.com

    Thank you again - kisses and hugs to you all, and especially to your gorgeous little one! And to her sisters!

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  13. Great post! I was born with a rare cleft through my face and ear, so I still get questions on occasion and stares too. I remember how I felt as a child and yet, still have a hard time approaching others with as much sensitivity as you have shown. God bless!

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  14. Thank you so much for this article. I have been "that" Mom who pulled her children away before they could be rude. Thank you for setting me straight - now I know that I was the rude person. I will forever react differently because of your amazing post. God bless!

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  15. Beth, thank you for writing this. I, too, was born with a rare condition known as Treacher Collins Syndrome. The stares I received growing up somewhat left an emotional scar. I now know I am a strong, beautiful, resilient woman. But I also know I never want kids of my own. Had children been more apt to confronting me and asking questions, I'd have showed them from the very start I was no different than them. I believe that parents need to teach their children about all things that make us unique (granted "all" is very broad). Teach them not to point and stare, but to embrace others who may look different. There is no normal and I think that's what we all need to learn. Again, thank you for writing this. I hope you and your family are doing well these days. Please feel free to visit my blog for any support. I try to be honest about my feelings and some I think you may relate to. 365krisbits.wordpress.com. -Kristin

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  16. As someone with a deformity and knowing what it's like to be the one who is stared at, I wholeheartedly agree with everything that you've said. I've also written a response to this situation on my own blog, but from the child's perspective. Thank you so much for sharing your story!

    My response: https://startingtocrawl.wordpress.com/2015/02/09/to-the-parents-who-pull-your-child-away-let-them-stare/

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  17. I am seeing this for the first time. This is the most beautifully written direct feedback and advice to others I have ever read. I am sharing it as widely as I know how... You address something that every parent encounters with doubt and you clarify how to be helpful... For those with kids with differences and to those who want to be less tongue tied when faced with not knowing what to say or do. I wish there weren't mean people everywhere, but thank God for the lively vulnerable and open hearted ones... And yes, they are most likely in the form of our young, inquisitive, curious and open regard children. Than you for your words and live and prayers to your family, especially your "sweet pea" and her wonderful and brilliant momma!!

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  18. Wheelchairs are often thrones for royal souls. Thank you for sharing your heart.

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  19. Hi Beth,

    My name is Caroline and I'm a writer at the #5 mobile website in the world, LittleThings.com, where we share uplifting stories like yours and get more than 35 million hits per month. Please check us out, as I think your letter would be a perfect fit for our audience. I would love to speak with you regarding opportunities. Please contact me at Caroline@littlethings.com.

    I look forward to hearing from you!

    Thanks,
    Caroline

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  20. Thank you for your post. I knew a girl with Apert syndrome (named Sarah too) who I used to babysit when she was a baby and a little girl. She was my dad's friend's daughter, so I got to see her grow into a beautiful woman with a big heart. She tragically died in an accident last year (not related to her disability), but I'm thankful to have known her. Your words are very accurate.

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